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This work may not be reproduced in whole or in part, by photocopy or other means, without the permission of the author. 1 ^ 1 National Library of Canada Bibliothèque nationale du Canada Acquisitions and Bibliographic Services Acquisitions et sen/ices bibliographiques 395 W ettngton Street Ottawa ON K1A0N4 Canada 395. rua WaWngton Ottawa ON K1A0N4 Canada r o u rf a Vaum rttinnem Our a # NotrmrMtn n e a The author has granted a non­ exclusive licence allowing the National Libraiy of Canada to reproduce, loan, distribute or sell copies of this thesis in microform, paper or electronic formats. L’auteur a accordé une licence non exclusive permettant à la Bibliothèque nationale du Canada de reproduire, prêter, distribuer ou vendre des copies de cette thèse sous la forme de microfiche/fOm, de reproduction sur papier ou sur format électronique. The author retains ownership of foe copyright in this thesis. Neither foe thesis nor substantial extracts firom it may be printed or otherwise reproduced without foe author's permission. L’auteur conserve la propriété du droit d’auteur qui protège cette thèse. Ni la thèse ni des extraits substantiels de celle-ci ne doivent être imprimés ou autremmit reproduits sans son autorisation. 0-612-62496-X CanadS APPROVAL Name: Carolyn M. Schellenberg Degree: Master o f Science in Community Health Thesis Title: “RUNNING TO STAND STILL” NURSES’ ROLES WITH CHILDREN AND FAMILIES IN THE COMMUNITY IN SCOTLAND: RELATIONSHIPS BETWEEN POLICY AND PRACTICE Examining Committee: r. Keith Egger o f the College o f Science and Management Üniversity o f Northern British Columbia Supervisor: Dr. Martha MacLeod Associate Professor, Nursing University o f Northern British Columbia Committee Member: Dr. Marianne Ainley Professor, Women’s Studies U niversit^^f Northern British Columbia Committee Member: Dr. Barbara Herring Associate Professor, Social Work University o f Northern British Columbia âLo> - & External m al Examiner: Exammer: Dr. A l^e Kiger Ki( Director, Centre for Advanced Studies in Nursing University o f Aberdeen, Scotland Date Approved: ^ f ^Q-zro Abstract The community care reforms, enacted in the National Health Service and Community Care Act 1990. have been a catalyst for change in the roles o f community nurses and families in Scotland. The ability o f health visitors, for example, to plan and deliver comprehensive care to families is changing as their work becomes more closely linked to the priorities o f general practice. Health visitors are experiencing less control over their own priorities, including their preventive work with families. In addition, deinstitutionalization is creating pressures for nurses to deliver more acute care in the community. Children with chronic illnesses and disabilities, until recently cared for by nurses in hospitals, are now being cared for primarily by their families, even when specialized nursing procedures are required. Health visitors and other nurses are taking on new components o f work, focused increasingly on hands-on care, in order to assist families with their care. The concept o f patient/family participation, where families and nurses negotiate the extent o f family involvement for hospitalized children, has taken on new meaning in the community Neither nurses nor families have sought these role changes, nor have they negotiated them. The impact o f policies on nurse and family roles thus challenges a taken-forgranted view o f roles, where role behaviours and expectations are controlled and negotiated by individuals within their role relationships. Nurses’ traditional interest in and research on roles has focused primarily on this micro level o f care, the relationship between client and nurse. While important, this focus has impeded nurses’ understanding o f policy and power, and the context for changes to nurse and family roles in the community. Such understanding is needed. 11 This qualitative study, conducted in Scotland, describes and explores the impacts o f UK community care policies on nurse and family roles. Feminist and critical social theories provide analytical perspectives that contribute to an understanding o f the socio­ cultural, political, and economic context in which role changes are occurring The researcher conducted interviews with 26 health, social services, and voluntary sector participants. Their descriptions o f role changes emerge in six themes, two o f which demonstrate organisational constraints on nurses’ roles in the context of the general practice, and in nurses’ work with social services in the provision o f community care. Two themes demonstrate changes to traditional community roles, and the erosion o f care as the holistic nature o f nursing work is fragmented among nurses, families, and other carers in Scotland. Family roles and respite care are reconceptualized in two final themes that illustrate how families take on tasks and work previously that o f nurses Issues of power, gender, and economics emerge as underlying and inter-related forces in policies that are leading to a reconceptualization, not only o f roles, but also of nursing itself. The researcher argues for a new paradigm for nursing that will assist nurses to understand and challenge the power relations that are changing the nature and meaning o f both roles and nursing in the community. Ill Table of Contents Approval.......................................................................................................................... i Abstract......................................... ü Table o f Contents.......................................................................... iv Acknowledgments............................................................................................................ viii Dedication......................................................................................................................... x C h ap ter One: Introduction......................................................................................... Introduction.......................................................... Interests in the Research............................................................................................... Purposes and Goals o f the Research............................................................................. Review of Selected Literature................................................................................ Role Concepts and Nursing Knowledge......................................................... Power.................................................................................................................. Policy................................................................................................................. The Policy Process............................................................................................ Policies and Nurses........................................................................... Reactive relationships.......................................................................... Proactive relationships..................................................... Policy, Nurses and Families............................................................................. The Issue o f Care........................................................................................... Organisation o f the Thesis............................................................................................ 1 1 6 9 10 10 13 14 15 18 18 20 22 24 26 C h ap ter Two: Research C ontext and Design......................................................... Introduction.................................................................................................................... The Context o f Care in Scotland.................................................................................. Central and Regional Governments...................................... Local [government] Authorities................................................................... The National Health Service (NHS)................................................................. Recent Policy and Organisational Changes............................... Designed to care.................................................................................... Modernising community care: an action plan.................................... Nurses’ Roles..................................................................................................... Children with Special Health Care Needs in Scotland.................................. The Setting................................... Research Design.............................................................................................................. Research Approach............................................................................................ Theoretical Perspectives........................................................................... Feminist and critical social theories..................................................... Role theory: an overview and critique................................................ Methods o f Data Collection.............................................................................. Research participants............................................................................ Interviews.............................................................................................. Recording.............................................................................................. Interview setting................................................................................... 27 27 28 29 29 30 30 30 31 32 33 34 35 36 37 37 41 44 44 46 47 48 IV Site observations .......................................................................... Documents............................................................................................. Data Analysis...................................................................................................... Issues o f Rigour............................ Special Considerations...................................................................................... Cultural sensitivity................................................................................ Ethical considerations.................. Summary.......................................................................................................................... 48 49 49 53 56 56 57 59 C h ap ter Three: T he Organisation of C a re ............................................................ Introduction................................................................. Context to the Theme o f Role Conflict........................................................................ The Historical Relationship between Doctors and Nurses............................ History of the Health Visitor Role................................................................... Primary Health Care........................................................................................... Theme One; Role Conflict: Health Visitors and GPs in Primary Health Care The Hierarchy...................................................................................................... Pow er................................................................................................................... The Struggle for Autonomy: Handmaiden versus Professional.................. Introduction.................................................................... Theme Two: Role Confiision........................................................................................ Context to the Theme o f Role Confusion..................................................................... Policy: Conceptualizing Health and Social Care............................................ The Professionals............................................................................................... The work.................................................................................. Roles and professional culture............................................................ The Organisations............................................................................................. Organisational culture.......................................................................... Responsibility........................................................................................ Change.................................................................................................... Summary.......................................................................................................................... 61 61 64 64 66 68 69 70 73 78 85 85 86 88 91 92 95 97 97 100 103 107 C h ap ter Four: The Location of Care: C are in the Com m unity.......................... 109 Introduction...................................................................................................................... 109 Theme Three: Role Strain.............................................................................................. I l l The Nature and Complexity o f Care in the Community................................. 112 Policies.................................................................................................... 112 Technology............................................................................................ 114 Attitudes................................................................................................. 117 Role Change; Reconstructing Community Nurse Roles................................ 118 Pressures on traditional community nurse roles................................. 119 Changes to role content and concept.................................................. 120 123 Resistance and adaptation to change............... Generalist versus Specialist Roles................................................................... 125 Community children’s nurses ................................................. 126 Leaming disability nurses..................................................................... 129 Emerging specialist roles..................................................................... 131 Theme Four: Role Fragmentation................................... 133 Deconstructing Nurses’ W ork............................................................................134 Holistic versus fragmented care.......................................................... 134 The responsibility for care: Where is the ‘named’ nurse?................ 136 Reconceptualizing Nursing............................................................................... 138 Who does what work?............................................................................139 What value is nursing?........................................................................... 143 The relationship between cost and nursing care................................ 144 Summary.......................................................................................................... 145 C h ap ter Five: M eanings of C are: How does Community* M ean?.......................147 Introduction................................................................................... 147 Theme Five: Reconceptualizing Family Roles............... 149 The Parent-Child Relationship........................................................................... 150 An Image o f Care................................................................................................ 152 Public Policy...................................................................................................... 153 Relationships between Policy andCulture.........................................................156 Theme Six: Meanings o f Respite.................................................................................. 157 W hat is Respite?..................................................................................................158 Respite in Policy..................................................................................................161 Respite in Practice....................................... 162 Being in crisis..........................................................................................163 The need for information..................................................................... 164 Belonging to the right group............................................................ 165 Summary..................................... 167 C h ap ter Six: Relationships between Policy and Practice: T he E rosion o f C are.......................................................................................... 169 Introduction.................................................................................................................... 169 Discussion and Summary............................................................................................. 170 Nurses’ Roles with Families and Children who have Special Health Care Needs............................................................................................ 170 The Organisation o f Care....................................................................................172 Role conflict......................................................................................... 172 Role confrision............................................................................. 173 The Location o f Care....................................................................................... 175 Role strain............................................................................................ 176 Role fragmentation.............................................................................. 176 Meanings o f Care: Reconceptualizing Family Roles and Respite Care 178 Conclusion........................... 180 Implications o f the Research........................................................................................ 184 Nursing Education............................................................................................ 184 Policy and Practice............................................................................................ 184 Research............................................................................................................. 186 Significance..........................................................................................................187 VI References.............................................................................................................. 189 Appendices A B C. D E. Numbers o f Research Participants and their Broad Role Categories ........ 204 Key Interview Questions and Probes................................................................... 205 Approval from the Ethics Committee ..................................................... 206 Letter o f Introduction and Participation Consent Form...................................... 208 The Context o f Care: Explanation and Diagram.................................................. 211 vu Acknowledgments I wish to thank a number of people in Canada and Scotland who have assisted me toward the completion o f this project. I thank my thesis committee at the University of Northern B.C. for their time and effort: Dr. Martha MacLeod, chairperson, for her attention to detail, and for sharing my goal to reflect as accurately as I could the experiences o f my Scottish participants; Dr. Marianne Ainley, who offered her knowledge, friendship and encouragement throughout my research, including some difficult times; and Dr. Barbara Herringer, who gave guidance and critical appraisal in the latter stages o f the research. Among my friends and colleagues at UNBC, I thank Professor Beverly Leipert, who offered her friendship and hours o f thoughtfril discussion. From my husband Garth Walmsley and my children Sean, Russ, and Elise - my Malcolm/Walmsley ‘clan’ - 1 received constant encouragement. I thank each o f them for their love, support, and patience; a special thanks to Elise, who at the age o f fourteen, encouraged her mother to go to Scotland with the words, “You go girl!” For those in Scotland who willingly received a stranger into their midst, I thank the faculty and staff, and my colleagues and friends in the Department o f Public Health at the University o f Aberdeen. For his encouragement, support and interest prior to, during, and following my stay in Scotland, I thank Dr. Stuart Watson, co-ordinator o f the MSc program. Without his effort and support, I would not likely have been able to conduct my research in Scotland. I wish also to thank two other professors at the University o f Aberdeen: Dr. Alice Kiger, for her support and interest during the early stages o f my research, and Dr. Angus Laing, for his encouragement and humour, especially when my V lll humour was failing, and for providing valuable feedback on my work prior to its completion. Not least, I wish to acknowledge a very special group o f people in Scotland; I thank all those who participated in my research and offered their time, insights, interest, and expertise. Their voices have stayed with me in their stories and experiences. Through some difficult times, it was my recollection o f their voices, concerns and contributions that enabled me to complete this thesis. Finally, I must thank my constant and beloved canine companions Hamish, Angus, and our now deceased Moira who, in accompanying me on many, many long thoughtful walks, have thereby also contributed to what lies within these pages. IX Dedication I dedicate this thesis to the memory o f two people who have been an inspiration to me in this work, and in my life, o f which this work is now so much a part; Dr. David Fish, my first research supervisor, shared my excitement for this Scotland-based project, and encouraged me to take the opportunity for what we both saw as a life-changing experience; M y mother, Julia Marie Jamison Schellenberg who, through the strength and determination she demonstrated during her own life, has been and always will be a source of inspiration for mine. Chapter One Introduction Nursing throughout the western world is changing with developments in nursing research, knowledge, and technology, and with an increased recognition o f the social and environmental factors affecting health Yet while nursing is changing, and is expected to change, there is a lack o f understanding about nurses’ roles and the nature o f role change The context o f role change, the effects on clients, and the impact o f role change on even nursing itself are often taken for granted or misunderstood. This research seeks to illuminate the nature and impacts o f role change arising in the context o f government policies in Scotland. Role theory, from which common perceptions o f roles have derived, suggests that the behaviours that constitute roles are controlled by what role partners expect or demand, and by what the person intends (Brooks & Kleine-Kracht, 1983). In this view role change, to the extent it occurs, happens through the processes o f interpersonal negotiations (Fein, 1990). Feminists have criticized role theory, however, because o f its failure to adequately explain role change (Armstrong & Armstrong, 1990). In my research, I have found that both feminist and critical social theories offer perspectives that have assisted my analyses. My interest in nurses’ roles and role concepts shifted from a British Columbia (B .C.) perspective when I learned that I was the recipient o f a grant that would enable me to study in Scotland. From September to December 1997,1 studied and conducted research as a graduate^ student in the Department o f Public Health at the University o f Aberdeen through an arrangement sponsored by the North Consortium’s Student Mobility Project. The focus o f my research in Scotland is on nurses’ roles with families and children who have special health care needs in the community, and through this lens, I explore relationships between nurses’ roles and social policy Children with special health care needs are defined for the purpose o f this research as; a heterogeneous population o f children having in common the need for specialized health care services. The definition includes children who have a broad range o f disabilities or chronic illnesses diagnosed at any time during childhood, including the prenatal period. Such chronic conditions may necessitate adaptations for daily functioning, prolonged or periodic hospitalization or special services in educational settings. (Todaro, Failla, & Caldwell, 1993, p. 262) Families affected include those who have children bom with neurological disorders, children who have experienced disabilities as a result of accidents or injuries, and children suffering firom chronic illnesses. The policies o f primary interest in my research are social policies - government policies intended for the public good (Hill, 1980). The nurses’ roles are those o f community-based, registered nurses, primarily health visitors and other nurses, including those in a variety o f specialist positions. I also make references to the roles o f district nurses and school nurses, although I was unable to directly interview them. Additional participants contributed to my understanding o f nurse or family roles, and to the provision o f services to families and their children. The focus on roles, and the emergence o f role-related themes in my thesis, evolved during the research process. I originally intended to use the term role mainly as a way o f ' Termed ‘post-graduate’ in Scotland. categorizing or describing the activities and behaviours that comprised nurses’ roles, and the ways in which they organised their provision o f services The focus that emerged, however, in the research discussions with nurses and other participants, was a profound interest in the roles of nurses and families, the concept o f role, and the impact of government policies in changing roles The title o f my thesis thus captures this central and underlying theme of role change, which is expressed in the voice o f the health visitor who said, “The nurse’s role is changing all the time It’s running to stand still ” The concept of role arises in every context related to nursing. In nursing practice, role reflects diversity, for example, in the differing roles o f health visitor, district nurse, or school nurse. Role also describes the nature o f nurses’ work and nursing care Thus, a health visitor may refer to her role in health promotion, or her educative role, thereby describing components o f the work. As Baldwin and Birchenall (1993) suggest, components o f nurses’ roles can be elicited from the work nurses do. In addition, educators use the concept of role to socialize student nurses to the nurse role. In research, one o f the ways in which nursing practice is studied, is from the perspective of tasks and activities that comprise the role (McFarlane, as cited in MacLeod, 1996). Role is also used to describe a relationship. The roles of nurses are enacted through the nurse-client relationship in the nurses’ provision o f services. Ideally these services are based upon and responsive to the needs o f the clients. When the client is a child in the home or a community setting, the nurse strives to be responsive not only to the child and his/her needs, but also to those o f family members and their role in the provision o f care. Nurses and families can be understood to be primary role partners within the role relationship. Whether nurses are engaged in practice, education, administration, or research the focus o f their interest and concern is the client. In my view, the nurse-client relationship underscores what it means to be a nurse o r to nurse, and is thus fundamental to nursing itself. This view o f the centrality o f the relationship between the client and nursing is consistent with that o f Bishop and Scudder (1991), who define nursing as both the care o f patients, the practice, and the study o f that care, the discipline. In this way, the terms nursing, nursing practice, and nurse role emphasize a defining interest in the client - client as individual, family, or community Despite the centrality of the nurse-client relationship, factors external to it are vital in shaping the relationship between nurses and families. Williams, Cooke, and May (1998) state: Professional-patient relationships, at whatever level o f analysis, are not natural events that happen They are socially constructed. They are fabricated or manufactured through human agency, and within a context or structure that is defined by powerful social institutions. They reflect the existing dimensions o f power relationships between individuals and groups... (p. 120) Roles must therefore be understood within a socio-cultural, political and economic context. It is within this context, which I term the ‘context o f care’^, that both policy and roles are formed, and the relationships between them are situated. Government policies of the 1990s have dramatically altered the organisation and financing o f both health and social services in Scotland and throughout the countries o f the United Kingdom (UK). These changes and others that will be described later, are defining new roles and relationships between nurses and doctors, and nurses and families, and are ^ In order to assist the reader in understanding whose voice is speaking, I provide the following guide. Single quotation maries, or inverted commas, are used to introduce a technical or invented term Short quotations cited directly from literature, and short quotes from participants (beginning in Chapter Three) are presented in double quotation marks. Longer quotations from either literature or participants are provided in the form of a block quotation. reshaping role boundaries for those who work at the interface between health and social services. The government policies o f primary interest in my research are the community care reforms, enacted in the National Health Service and Community Care Act (DOH, 1990) which accelerated the shift from acute care and long term care settings to care in the community. Although not intended for children, the legislation is affecting the care of, not only adults, but also children in Scotland. Although these policies are relatively recent, care in the community is not new. Many families have provided and do provide care relatively unassisted to their sick and disabled family members. Similarly, nurses as midwives, health visitors and district nurses also have a long tradition o f providing care to families and children in the community. What is new, however, is the nature o f care in the community subsequent to the reforms. With changes in the level and complexity o f care for children in the community, nurses’ and families’ roles are undergoing significant changes. They and other carers, called caregivers in Canada, are now providing care that was provided until recently in hospitals and institutions by nurses. Families, as the primary carers, are assuming responsibility for increasingly complex nursing tasks New nurse roles are emerging to assist families to provide this care. Within this context o f change, families, health visitors and other nurses are experiencing pressures to reconstruct their roles. Government policies do not account for all the changes affecting roles. Additional policies that are contributing to change in nurses’ roles concern nursing as a profession and a workforce. These nursing policies include those related to the regulation of nursing, nursing education, workforce issues, and the domain o f nursing practice. They fall within the control o f nursing as a profession to the degree that the authority for professional control is delegated to the United Kingdom Central Council (UKCC), the licensing body for nurses, health visitors, and midwives. Policies that have an impact on nurses' roles are not, however, isolated from one another Nursing policies, for example, may be developed in order to contribute or respond to changes in government policies affecting health needs and services. It is not within the scope o f this research to examine policies^ relating to nursing education, nursing as a workforce, or specific nursing practices. The remainder o f this chapter is intended to convey additional introductory elements. These include my interests in the research, the purposes this study seeks to address, a review o f concepts arising from literature that are central to the study, and an overview o f the organisation o f the thesis. Interests in the Research Prior to commencing my research in the autumn of 1997 in Scotland, I had been working for six ye%ns as a nurse consultant with a branch o f the provincial government in British Columbia. In this role I worked with families, nurses, doctors, social workers, and other service providers to plan for the hospital discharge o f adults and children with special health care needs to homes and families in various B .C. communities. Many o f the children, due either to the complexity of their care requirements, and/or the inability of their families to manage their care at home, had been living in long term care institutions for varying periods o f time. My research interest evolved from my need to make sense ^ The discussion of policies in this research omits detailed reference to some of the specific UK policies cited in the literature as giving shape to nursing practice. Recent examples include Proiect 2000 (UKCC, 1986), which looked at the training and education of nurses, midwives and health visitors to help them meet health care needs in the 1990s and beyond. The Scone o f Professional P ractice (TJKCC. 19921 document was intended to help nurses, midwives, and health visitors to become more responsive to patients’ needs (Jowett, 1997). This research draws on policies that the participants felt had important impact on their roles. They referred primarily to govenunent policies. out o f two major issues, the first, the way that resources were allocated to these and other families, and the second, the increasing fi-agmentation in nurses’ roles and work. The concern with resource allocation heightened when I participated on a provincial screening committee to determine which children and families would be eligible for a generous degree of financial help and agency support firom the provincial government. These resources were intended to meet families’ perceived needs for care including therapies, rehabilitative equipment, home renovations, respite in associate’ families, and on-call nursing consultation. The final decision regarding eligibility was centralized with a small leadership group in the provincial capital. The decisions regarding resource allocations demonstrated inequities among families in B.C.. Although not clearly stated, it gradually became apparent that a key criterion o f eligibility for resources was based on the extent to which the child had been living in an institution, or the degree to which the child’s family had used hospitals or other institutions for respite. Families already living in the community, often struggling with minimal support firom government, were ineligible for all but a small portion o f the financial support and services available to the others. On rare occasions, if a family exerted pressure and demonstrated that they would likely be placing the child in a hospital, they also became the recipients o f these resources and services. However, this information was not readily available to the public or to other families in the community who continued to struggle on their own. I was also concerned with the way in which nurses’ work was becoming increasingly fi-agmented among different nurses and care providers in the community, with the result that some families were being inundated with too many providers, while others had too few. To help address this problem, I was asked to participate on a provincial committee o f nurses to assist in developing nursing standards for a program of nursing support to children with special needs living in the community. The goal o f the program was to integrate up to five different provincial programs providing some aspect o f nursing support potentially, at times, to the same families. During the course o f my involvement, the committee developed nursing standards that integrated key principles drawn fi-om both research and practice. Through consultation with nurses working in both urban and rural areas, we were able to develop standards and guidelines that recognized the need for nurses with expertise in child and family care, and the need for one consistent nurse available in regions to plan and coordinate services for families. Despite the excellence o f the product, a set o f nursing practice standards (B.C. Ministry for Children and Families, 1997/ and a program entitled. The B.C. Nursing Support Services For Children with Special Health Care Needs in the Community, the program did not fully address our original concerns regarding service equity and fi-agmentation. Families whose children were previously institutionalized continue to receive preferential treatment to families who have always cared for their children at home, and regional differences and problems continue to reflect a patchwork approach to service provision. These experiences, and others, led me to ask questions about the way in which ' The standards are currently undergoing revision. nurses’ roles and work evolve and are realized in practice, what role nurses have in policy decision making, what leads nurses and other professionals to comply with decisions that promote inequities in care, and what is the nature o f relationships between policy and nursing practice. These issues emerge in my research Purposes and Goals o f the Research The purposes o f this research flow from the problem it seeks to address. The traditional focus of interest in nursing has been and is the client, and the role relationship between client and nurse. While central to nursing, this micro view has, nevertheless, limited nurses’ vision and understanding o f the policy context within which the roles of client and nurse are situated, one that is contributing to profound change in nurses’ and families’ roles. My research is based on the assumption that the nature o f changes occurring in the policy context can and do have negative impacts on the health and well­ being o f children and families. Chooporian, cited in Stevens (1989), supports this concern: Nursing ideas lack an archeology o f the social, political, and economic worlds that influence both client states and nursing roles. The unequal class hierarchies, power relationships, political interests, and economic policies that produce ideologies such as sexism, racism, ageism, and classism interfere with health and cause illness, (p. 56) Issues of power, politics, economics, and other socio-cultural forces that create inequities in and barriers to health, are thus vital to nurses’ roles in promoting the health o f families. My purposes, therefore, in conducting this research are to describe nurses’ roles with families and children with special health needs in Scotland. Through these descriptions, I explore relationships between policy and roles and illuminate ways o f understanding roles and role change within this macro context. A goal o f my research is to contribute to a reconceptualization o f nursing that locates and understands nurses’ and family roles in a broader context than has traditionally been realized by nurses A new paradigm for nursing has the potential for promoting health through emancipatory change for both nurses and families. Review o f Selected Literature Role Concepts and Nursing Knowledge Role concepts derived from role theory^ and expressed in the nursing literature tend to obscure a relationship between roles and the policy domain Within this section, I discuss definitions and characteristics o f role found in role theory and nursing literature that illustrate this point. For example, the definition o f role as a set o f behaviours associated with a given position (Johnson, 1993; Strader & Decker, 1995) conveys a neutral^ view that locates role with the individual in her/his status. Status itself is neutral, consisting o f a collection o f rights and duties (Biddle & Thomas, 1966). In another definition, role is described as having at least two components: actual behaviours, and normative expectations concerning the behaviours (Biddle & Thomas). These views locate role in the cultural context in which status and social expectations are central in shaping roles. In later interpretations o f role theory, Lopata (1991) described the social role as one which goes on, not just through the behaviour of one person, but also through interrelationships among several in the “role set” (p.l), thus emphasizing the relational aspect o f roles. Professional roles are understood to have their origins in the expectations ^ In Chapter 2 ,1 discuss background to and perspectives in role theory. ^ Neutral, as in “not aligned with or supporting any side” (Random House Dictionary, 1987, p. 1292). 10 of three sources: peers, clients and the public (Lipsky, 1980, p. 46). Kibrick (1963), drawing from role theory to analyse nurses’ perceptions of their role, identified at least four role components: knowledge, activities, attributes, and relationships. Together, these definitions o f role confine role primarily to the individual and her/his relationships, situated either within a neutral organisational or relatively stable cultural context. In more recent nursing literature, role itself is often a given , whereas it is the component o f work, such as the nurse’s role in, for example, health promotion that is of interest. The concepts o f ‘role strain’ and ‘role conflict’ tend also to confine role to the individual or her/his relationships. For example, role strain is defined as the felt difiBculty in fulfilling role obligations, that is, if pressure is strong and enduring it results in strain (Goode, 1966, p. 282). In this view, Goode notes that institutions are made up o f roles, and thereby points to the link between social behaviour and social structure (p. 9). Role conflict addresses the potential for conflict that may arise from the fact that an individual has a plurality o f roles, or from perceived or incompatible expectations (Biddle & Thomas, 1966, pp. 275, 287). In my research I have found, however, that these definitions are inadequate. Among nursing’s concern is the way nurses conceive and are socialized to their roles. Corwin and Taves (1962) suggest that role conceptions are the images o f the rights and obligations a person perceives to be associated with her position. In their view, these conceptions are important because they provide expectations that guide the nurse’s conduct, and generate attitudes such as personal goals and motives. ^ When I first became aware of an apparent lack of analysis of roles in the more recent nursing literature, I asked a Sociology instructor for the current thinking on role theory. He said, “It just is” (B. Rae, personal communication, October 4, 1999). 11 Role socialization represents a stage in role development in which professional values and norms are internalized in behaviour and self-concept (Hickey, Ouimette, & Venegoni, 1996). Nursing’s interest in socialization appears to arise from nursing history, and an interest in the moral character o f nurses Rafferty (1996) alludes to the importance o f the early socialization o f nurses in her statement; “Nurses became the objects as well as the subjects o f reform” (p. 4). The socialization o f nurses continues to be a focus in nursing education today. Feminists are critical o f socialization, and some argue that, because o f its impact on children through the inculcation of gendered values, it is one of the four^ main social structures that need to be transformed before women can be liberated (Humm, 1995, p. 270). Gender refers to the social and cultural dimensions o f being male or female, in contrast to sex differences between the two Gender differences are mainly due to social factors such as socialization practices, social rewards, status differences, and expectations (Basow, 1992, p. 2), and tend to reflect a social devaluing o f women and women’s contributions. One area in which this devaluing occurs is in the context o f work, discussed later under the topic, the issue o f care. Role negotiation appears as a relatively recent concept in nursing literature, one that evolves, as Gallery and Smith (1991) suggest, from the concept o f patient participation. This concept usually refers, in the case of children and families, to parental involvement in the care o f the hospitalized child. In the nursing literature, negotiation tends to refer to discussion that results in a mutual agreement (Knight, 1995) The research by Gallery and Smith (1991), however, concerning role negotiations between ' The others are production, reproduction, and sexuality (Humm, 1995). 12 nurses and parents, suggests that nurses hold a position o f power relative to the patient, and they state: “It is only the nurse who has the power to relinquish control and to choose to negotiate with the parent about roles or about care” (p. 776). Whether the negotiations take place in the hospital or community, these views suggest that nurses themselves own, control, and negotiate their roles. A contrasting view suggests that, although efforts to achieve negotiation may occur between individual nurses and clients, and between nurses and other role partners, the parties involved are not necessarily equal (Gallery & Smith, 1991), nor does either party necessarily control the process or the outcome. Negotiation takes place in a context o f power in which more powerftil groups control the allocations, as well as the definitions o f the situation (Twigg & Atkin, 1994; Hugman, 1991). Power There are many definitions and analyses o f power in the social sciences and nursing literature. 1 will discuss two contrasting views, one that sees power as an element o f relationships, and another that sees it in the context o f social structures. In the first view, power is essentially behavioural in focus (Hugman, 1991). The individuals or groups whose preferences prevail in conflicts, are those who exercise power (Gough, 1994a). This focus on the individual is consistent with notions o f autonomy that link personal freedom and responsibility with the individual (Scott, 1998) rather than with social structures. Similarly, in this perspective, role is linked to the individual, and the qualities an individual brings to his/her role (Scott, 1998). In a contrasting view, power is located not so much in individuals or groups but in systems o f domination where it involves the shaping o f people’s preferences so that 13 neither overt nor covert conflict exists (Gough, 1994a). In this way, the relations of power can become both accepted and routinised. Miles (1991) points to the relations of power in health care, stating: The practice o f healing operates within the framework o f a complex division o f labour.. that is hierarchical in character, some occupations and groups o f workers being accorded higher prestige and financial rewards, and wielding more power, than others, (pp. 124-125) Power, expressed through systems, institutionalizes inequalities, entrenching ideologies such as sexism, racism, and ageism, and it is therefore, the system that is biased, not simply individual behaviour (Gough, 1994a, p. 76). Power is frirther discussed in the following sections concerning policy, and is also defined and discussed more fiiUy in Chapter Three, where it emerges in the theme of role conflict to illustrate a relationship between roles and the policy domain Policv There are differing views o f policy, some o f which also obscure a relationship between roles and the policy domain. Among the views o f public policy, that is, policy formed by government bodies, I draw upon two reflected in the literature. One view defines policy simply as the principles that govern action directed towards given ends (Mason & Leavitt, 1993). This definition considers policy as a neutral conveyor of procedures and goals to be implemented for the common good (Cheek & Gibson, 1997), unrelated to a political or ideological grouping. A notion underlying public policy in the United Kingdom is that central government should properly concern itself with the prevention o f distress and strain among all sectors o f society (Oakley, 1994), a view that 14 has led to descriptions o f Britain on the whole as a welfare stated As a category o f public policy, social policy concerns the welfare o f the public In essence, if governments are performing their role on behalf o f their citizens, all social policy could be described as public or government policy In a contrasting view to that o f policy as neutral, a number of writers (Cheek & Gibson, 1997; Edelman, 1988; Hill, 1980) consider policy to be an expression o f values by a politically dominant group Social policy, o f which health policy is a component, shapes and influences decisions that control and ration health resources (Masterson, 1994), and includes both decisions about the allocation o f values and the actions that allocate values (Ham, 1992, p. 94). Social policy must be seen, therefore, as a political process, where politics itself is concerned with access to power According to Howlett and Ramesh (1995), these differing views on neutrality and political interests have evolved into distinctions in the literature between policy study and policy analysis. Thus, these two approaches to policy contribute to conflicting conclusions about the public policy-making process, and dififering interpretations o f policies themselves (Howlett & Ramesh, 1995, p. 9). The neutral view of policy is one commonly presented by government, nursing organisations, and public institutions, thereby reinforcing an approach to policy study that lacks analysis of the relations o f power operative in the policy process. The Policv Process The policy process itself may be viewed as a neutral activity. For example, a ^ The term originated in Britain in the 1940s to contrast with the notion of a “power state”, which lacked a moral and spiritual commitment to the welfare of the people (Oakley, 1994, p. 2). 15 common assumption concerning the policy process is that government decision-making and spending is based upon a body o f knowledge and research that formulates social policies (Edelman, 1988). Studies o f the consequences o f social research have confirmed, however, that direct links between social research and policy are rare (Callahan & Jennings, 1983). Another assumption is that government ministers decide policy and civil servants carry it out. In reality, civil servants have considerable influence over policy making (Masterson, 1994). Current policy analysts separate the policy process into stages o f formulation and implementation. Howlett and Ramesh (1995) suggest that policy formulation is conceptualized in terms o f the key actors in policy development, what brings them together, how they relate to one another, and how their interaction affects the process (p. 125). They also suggest that policy decision-making involves choosing from a number of alternative policy options, including doing nothing, that are identified in the process of policy formulation (p. 138). Policy implementation, the process o f carrying out a policy decision, was at one time assumed simply to happen. It is now viewed, however, as a more complex process and the particular approach depends on one’s analyses. One view assumes a top down approach in which public ofiBcials in organisational roles ensure that policies are carried out, while an opposing view assumes the bottom up approach, where those affected by and involved in the policy help to implement it (Howlett & Ramesh, 1995, p. 153.) Consistent with the latter view, Lipsky (1980) suggests that street level bureaucrats, such as fi^ont line workers in public services, make policy in two related aspects: through the 16 discretion they exercise in decisions about clients, and through their combined activities, in which individual actions add up to agency behaviour (p. 13). In a similar view, Twigg and Atkin (1994) describe the behavioural/pluralist concept o f policy, which accepts that policy may be vague and contradictory, and created at all levels o f the organisation (p. 24). They note that, for informal carers in particular, for whom there is largely a policy vacuum in the UK, most o f the relevant policy is implicit, that is, embedded in the everyday patterns o f practice in organisations. This contrasts with explicit policy, which is formally defined and determined at the top of the organisation (Twigg & Atkin, p. 24). Shifting to a more critical perspective on policy and policy processes. Cheek and Gibson (1997) state that it is necessary to examine not only the text o f the policy, or its implementation, but also the relationship between processes o f production and implementation and how they are constituted through dominant ideologies (p. 671). In other words, policy is developed by and implemented through dominant groups and their prevailing ideologies, and must therefore, be understood in this way. Critical perspectives do not regard social reality as authentic or natural, but rather consider the relationship between power, knowledge and the social world, including that o f policy (Cheek & Rudge as cited in Cheek & Gibson, 1997). Fairclough (as cited in Cheek & Gibson) asserts that common sense assumptions are embedded in language, and that these assumptions are in fact ideologies that serve as mechanisms of power (p. 670) expressed through policies and the policy process. These critical perspectives are useful to my own analyses. 17 Policies and Nurses In a search o f the nursing and allied health and social sciences literature, I found only a limited number o f references describing nurses’ relationship with the social policy domain. The majority o f the references I found reflected American nurses’ growing interest and participation in the area o f health reform. Although not necessarily specific to nursing, I found additional contributors to the topic o f policy in the fields o f social policy, sociology, political science, and feminist and critical social theory. In the following I highlight elements drawn fi’om within two perspectives described by Spurgeon (1997) as ‘reactive’ and proactive’ The former seeks to understand the consequences o f policy for nurses, and the latter illustrates how nurses may influence and shape policy. Reactive relationships. There is a marked lack o f discussion in nursing literature on how the practice o f nursing is shaped by social policy (Salvage, 1992). Policies determine, however, the context in which nurses provide and clients receive care, for example, whether it will be in an institutional or community setting, whether care will be privately or publicly fiinded, what individuals and groups are entitled to receive care, and what resources are allocated to fund services. The implementation o f policy decisions includes the specific program and services that are delivered in homes, institutions, and communities and by whom the services are provided. Thus the relationship between nursing practice and policy is critical when we consider that both nurses’ daily working lives, and the daily lives o f clients are defined and controlled by social policy (Gough, Maslin-Prothero, & Masterson, 1994). 18 Policies influence nurses’ roles at a number o f levels: the state, the profession, the organisation, the unit within the organisation, and the individual (Cheek & Gibson, 1997). At the level o f state policies, such as the National Health Service (NHS) and Community Care Act 1990. Walsh and Gough (1997) suggest that the actual impacts on nurses’ roles are unintentional. In Spurgeon’s (1997) view most o f the UK’s health reforms since the 1990s have not contained direct statements about what nurses should and should not do, however, they have had a continued impact on the nursing profession. Among the consequences he identified are: (a) an inability to deliver the level and standard o f care nurses would wish because o f a combination o f workload and resource constraints, (b) constraints on nurses’ capabilities by the medical hierarchy, and (c) new roles and new demands on roles (p. 34-35). These impacts are demonstrated in my research. Further consequences o f the reforms would seem to be, suggests Cole (1997), an increasing fragmentation o f where and how care takes place as the Trusts, responsible for providing health care, follow their own agendas (p. 27). Similarly, Fatchett (1990) suggests that while UK government policies beginning in the late 1980s did not explicitly address the role o f nurses they did, nevertheless, marginalise community nursing in general and the health visitors’ role in particular. For example, the GriflSths Report (Griffiths, 1988) was described as being “locked into the idea that medical [and health] needs are met by doctors, and arranged by the general practitioner (GP), that nursing occurs in hospitals, and that other needs in the community can be met by social services ” (Fatchett, 1990, p. 216). In addition, the organisation o f nurses’ roles in the community subsequent to the reforms places them under even closer control o f general practitioners than previously (Neave, 1994). Thus the notion o f 19 expertise and expert practice in relation to the caring and care interventions (the work o f nurses) has been rapidly deconstructed in government policies - a move from which community nursing has struggled to recover ever since (Walsh & Gough, 1997). These examples o f the reactive relationship suggest differing perspectives on the impacts o f policy, which warrant frirther analyses In one view, the impact o f policies on nurses is unintended. A second view raises, however, a question about intention: does the lack o f explicit policy statements concerning nurses reflect unintentionality, o r does it simply obscure intention? In her study o f the relationship between nurses and policy, Robinson (1992) observed that many nurses misunderstand policy and its relationship to their work Traditionally, nurses have seen their roles operating primarily at the micro level o f health care, the level of individuals and their health care needs. Policies about which nurses are most knowledgeable are those surrounding the nurse patient relationship and include policies to guide specific practices such as resuscitation, the use o f restraint, incident reporting, and drug administration (Cheek & Gibson, 1997). The majority o f nursing literature relating to policy focuses on those policies that guide specific practices (Cheek & Gibson, 1997). These clinical or micro level policies are vital to safe and effective client care. However, micro approaches alone are likely to obscure broad societal problems, which ultimately influence the lives of people in a health and social care context (latridis, 1994). Proactive relationships. Factors that underlie the influence o f nurses on policy are complex and multi­ faceted. These factors include: (a) the historical organisation o f nursing as an occupation. 20 (b) the ways in which nurses arrive at an understanding o f their roles, and (c) the way in which nurses understand and resolve value conflicts in their everyday and professional life (Gough, Maslin-Prothero, & Masterson, 1994). In her study o f nurses’ influence on policy, Robinson (1992) found that education is also a crucial factor in producing nurses who are not afraid to participate in policy making and to make creative contributions to planning, delivery and evaluation o f health care (p. S). I would add that nurses’ position within a hierarchical structure, discussed along with power in Chapter Three, also contributes to nurses’ relative powerlessness within both the policy arena and their daily working environment. In contrast to the medical profession, which forms a powerful interest group in shaping health policy, the nursing profession traditionally has had relatively little power (Masterson, 1994b). Historically, nurses only followed policies for which they had little, if any, responsibility for developing (Sprayberry, 1993). In his analysis o f the healthcare hierarchy, Hugman (1991) suggests that the hierarchical relationships between medicine, nursing, and also other caring professions mirror the gendered power relations o f the broader social structure. During the past decade, nurses in Britain have seen an even greater degradation of their power and influence (Gough, 1997) than previously. Under the 1990 reforms, the power o f doctors was strengthened. Consultants (specialists) were given the opportunity for management roles with responsibility for devolved budgets, and GPs were given control o f purchasing services through fundholding arrangements (Masterson, 1994b). Nurses, who have less lobbying power than doctors, have been given relatively few executive positions. Witz (1994) says that historically, any changes derived from an 21 agenda set by nurses have been successW only when they have synchronized with wider organisational and governmental concerns. She also asserts that nursing interests have always been, and for the most part, continue to be subordinated to those of more powerful groups such as the medical profession (p. 39). Concepts related to power also extend to nurses’ power as an occupation and their roles with clients. A common view (Sprayberry, 1993) is that if nurses organise in ways that promote and consolidate their power, they can influence policy, as well as become more empowering to clients. Eichler (1980) says protesting one’s powerlessness is the first step towards gaining power, however, only as a group finds a collective voice and collectively questions the legitimacy o f a existing power structure, can they begin to challenge the validity o f the viewpoint o f the powerfiil group (p. 18). In a contrasting view, Cahill (1996) suggests that nurses must surrender a degree o f power and control in order to empower their patients. In the healthcare hierarchy nurses lack power, but in terms of relative power, patients have the least. The issue o f power is central in the relationships between policy and nurses, but also leads to questions concerning the position o f families in the relationship. Policv. Nurses and Families The nursing literature offers little by way o f conceptualizing the relationships between policy, nurses and families. Meister (1993) does, however, describe a relationship in which policies and nurses are agents for the families. Within this view, social policies and nurses provide access to economic, social, health, and education resources, although they operate at different levels: social policies determine access for groups of families, while nurses affect access primarily for individual families. This 22 conceptualization produces three sets o f relationships: social policy and families, social policy and nurses, and nurses and families. This description o f relationships suggests that nurses and policy have equivalent power to act on behalf o f families, a view that I dispute in my research. The literature offers some alternate views that suggest policy and nurses do not necessarily affirm or serve the interests o f families. For example, in their study o f the needs o f families and other informal carers in Britain, Nolan and Grant (1989) observed that, while the philosophy o f community care supports the notion o f autonomy, and individual wishes, there is an element o f financial expediency involved (p. 950) that may contradict this notion. Although the study was not confined to parent carers, there were indications that nurses and other professionals may be placing responsibilities on carers without recognizing their limits to provide care. In their literature review concerning what carers would like to receive or are not currently receiving, Nolan and Grant (1989) identified five key areas: (a) information, (b) being recognized and valued for their work, (c) skills training, (d) emotional support, and (e) some form o f regular respite (p. 951). While they described the need for nurses to take a more active role with carers, they also identified factors that are crucial determinants o f role definitions, among them: the knowledge and value o f nurses, the orientation of doctors and administrators, the structural components o f the service, and consumer education (Nolan & Grant, 1989, p. 958). In another study, Kirk and Glendinning (1998) conducted a review o f research literature concerned with trends over the past fifteen years toward the provision o f care in the community, with a focus on hospital level care in the home, that is, the relocation o f 23 hospital services to parents and other carers (p. 381). They observed a lack o f research focusing on the impact o f high technology care at home on informal carers in the UK and North America, or on the experiences for those both giving and receiving this care. O f particular interest, was their suggestion that the “centrality of the nurse-patient relationship in the nurse’s construction o f nursing” (Kirk & Glendinning, p. 375) may actually contribute to a lack o f attention to the needs o f informal carers. They also observed that the participation o f informal carers in traditional nursing challenges nurses’ professional power, and can “lead to concerns about deprofessionalization and role erosion” (Kirk & Glendinning, 1998, p. 377). The issue o f role erosion focuses predominantly in the literature on external threats to nurses in their professional role, rather than to the erosion o f patient care. The Issue o f Care Caring is postulated as the central and unifying domain for nursing knowledge and practices (Chinn & Kramer, 1995) in both Britain and North America. Care has played a central role in divisions between doctors and nurses, where doctors and curing, are socially more valued than nurses and caring (Witz, 1994). Care has a multiplicity of meanings both within and between cultures. For example, in Canada, care as both verb and noun, and caring as adjective and verb are strongly, though not exclusively, associated with nursing. Care/caring, terms which are used interchangeably, also refer to a specific kind o f relationship between two people. The topic of role erosion also emerges in the literature, particularly with regard to health visitors (Walsh & Gough, 1997; Meerabeau, 1998), and the Registered Nurse (Mental Handicap) (Baldwin & Birchenall, 1993). 24 In Britain, caring refers to a relationship, usually between two people, one of whom is dependent and is looked after at home for no pay by the carer (Ungerson, 1990). The relationship often refers to adults because children are already assumed to be the recipients o f care. However, the term carer - one who does the looking after - is also applied to parents, relatives and friends looking after children who require special care due to chronic illness or disabilities. In other words, carers provide care exceeding that which is implicit in normally dependent relationships between family members, a kind of caring that is distinguished as informal care (Qureshi, 1990). The implication is that informal care is based on feeling and a relationship between those involved. Taking place within the private domestic domain, informal care is regarded as spontaneous, unplanned, unregulated and unobservable, in contrast to formal care, which takes place in the public domain, and is provided by statutory services and charitable agencies within both home and institutional settings (Qureshi, 1990). Yet the majority o f caring does take place, and always has taken place within the home, with only a relatively small portion occurring in hospitals and other institutions (Maslin-Prothero, 1994). The issue o f care must also be understood in terms o f the marketplace. In marketdriven economies, such as the UK and Canada, the value o f the work and the worker is generally measured in terms o f monetary remuneration, wage labour and employment, the traditional domain of men (Neysmith, 1993). Within this context, women’s work, typically domestic and caring work, is underpaid and undervalued. Brown and Smith (1994) suggest that the dilemma for women in their caring roles is heightened in the context o f community care. They state: 25 There is a vicious circle: the fact that women do the work makes it appear unskilled and undemanding, and the fact that they are skilled enough to care without straining the appearance o f an ‘ordinary’ relationship further undercuts their need for proper recompense, (p. 47) These observations are relevant to the roles o f both nurses and family carers, o f whom the majority are either women, or men involved in work that is considered to be the natural domain o f women. Organisation o f the Thesis This chapter has provided an introduction to the nature, scope and purposes o f the research, and to central concepts that emerge in the research and related literature. These concepts, which relate to roles, policy, the policy process, power, and issues in care, are further developed through the research findings. In Chapter Two, I provide a discussion and explanation o f terms specific to the context o f care in Scotland, and I review the research process through which I obtained and analyzed my data, or research findings. The findings are presented as themes and sub­ themes, within three consecutive chapters. Chapters Three and Four contain themes that concern primarily nurses’ roles, with those o f families in the background, while Chapter Five brings family roles and issues in respite care to the foreground. Chapter Six concludes with a discussion and summary o f the themes, and presents the implications and significance o f the research. 26 Chapter Two Research Context and Design Introduction My effort as a novice researcher to conduct research in another country and different health care system is a story in itself, o f which I will describe a small part before discussing the research context. W hen I began my research in Scotland, I believed that I faced three major challenges. The first challenge was to gain an understanding o f the context o f care; the health care system, the policy field, organisational structures, roles and services. The second challenge was to find within this context both content and meaning relevant to my research goals. The third challenge was to obtain nurses and others to participate in my research. As 1 sought to meet these challenges, I found that in fact they were one - the single challenge o f attempting to conduct research in a different culture with its own traditions, history, systems, institutions, ways o f doing, describing and being. My task became one primarily o f letting go o f pre-conceptions, expectations, and o f the known and familiar through my use o f language, definitions, and descriptions. When I was able to begin to accomplish that, and 1 remember the moment o f discovering at an intuitive level that this was my task, my research began to progress! Because my research is concerned with roles, nurses’ experiences in their roles and also with others - doctors, social workers, families, carers - in their roles, the content is both subjective and contextual. Thus I have found it usefiil to combine the research context and design together in this chapter. In the first section, the context o f care in Scotland, I discuss specific terms, policies, and meanings that will assist the reader to understand that context. Among these, 1 briefly discuss infoimation related to levels o f 27 government, specific policies, organisations, community nursing, and children with special needs. I will further discuss these and other items in my findings as the need arises. In the second section o f this chapter, the research design, I discuss the theoretical perspectives and methods that have guided my research. The Context o f Care in Scotland Central and Regional Governments Central government, situated in London, England holds administrative powers, some of which are devolved to local governments or offices in the other countries that also comprise the UK, that is, Scotland, Wales, and Northern Ireland. The policies, organisations and processes that shape health and social services differ. The relationships and the distribution o f power between the state, regional, and local governments are still evolving to the extent that, in 1999, Scotland established its own parliament. Public policy-making involves production o f Acts o f Parliament (Hill, 1980), which includes principles and guidelines for all the countries o f the UK. Policy documents themselves, some o f which are produced as White Papers, may provide either country-specific sections, or guidance to aid in the development o f the country’s own policies. For example. Caring for People (1989b) provides direction for the delivery o f community care in the UK, however, there are sections that are specific to Scotland and Wales. As another example, the White Paper, Designed to Care (Scottish Office, 1997), is the Scottish equivalent to England’s The New NHS (Department o f Health, 1997), although there are differences between the two. 28 Local (government) Authorities National legislation defines the powers o f local authorities, and may set limits to those powers (Hill, 1980), although as I indicated, the relations between different levels o f government are changing. There is no single UK local government system, but rather different systems in England, Wales, Scotland and Northern Ireland (Masterson, 1994b). Elected officials are responsible for policy-making at local levels, however, central government policies set the guidance for the delivery o f public services. For example, the NHS and Communitv Care Act 1990. while having profound impacts on the organisation of the NHS, also established new roles and responsibilities for local authorities in the planning and provision o f community care, discussed more fully in Chapter Three. The National Health Service The National Health Service in the UK was established in 1948 as the first health system in any developed nation to offer fi-ee and universal entitlement to state-provided health services (Klein, 1995). In Scotland, the jurisdiction of the NHS has been administratively devolved to the Scottish Executive Department of Health, which receives funding fi'om the Scottish Government (A. Kiger, personal communication, September 1, 2000). Health services in Scotland and the UK are based in two main sectors; secondary or hospital-based care, and primary health care, the first point of contact between patients and health services. The NHS and Community Care Act 1990 marked a fundamental shift in the organisation and financing o f health care in the UK. The nature of these changes had been outlined in the community care reforms, contained primarily in two government 29 documents. Working for Patients fPO H . 1989a) and Caring for People (POH, 1989b), which preceded the Act. Laing and Cotton (1996) state that, in keeping with the political ideology o f the Thatcher era, the government attempted to change the NHS from an internalized professional bureaucracy to a decentralized network o f separate organisations operating within the framework o f a market structure. This framework is called an internal market, developed to encourage competition, choice, and flexibility in the NHS. At the time my research was conducted in 1997, the organisational units responsible for the delivery o f health services included both providers and purchasers. The former included self-governing providers, called NHS Trusts and other units responsible for buying health care on behalf o f populations they represent. The purchasers consisted o f health authorities (Regional Health Boards in Scotland) and fundholders, that is, general practitioners responsible for their own practice budgets (Laing & Cotton, 1996). The NHS and Communitv Care Act 1990. and the role o f the NHS, Trusts, and GP fundholders are discussed more fully in Chapter Three. Organisational changes in Scotland, subsequent to 1997, have eliminated GP fundholding, and led to other developments outlined as follows. Recent Policy and Organisational Changes Designed to Care fScottish Office. 1997) This White Paper was released just prior to my departure following my initial research in Scotland; implementation began officially in the following year, and was still underway during my second trip in June 1999. Designed to Care introduced another restructuring o f the NHS. Existing acute Trusts have been merged to form one acute 30 Trust in each health board area, and community care Trusts are now called Primary Care Trusts (A. Laing, personal communication, July 10, 2000). The role o f GPs as purchaser fundholders has been replaced by collaborative organisational structures called Local Health Care Co-operatives (LHCC) which, as the operational arms o f Primary Care Trusts, are responsible for developing service provision within a geographic area (A. Laing, personal communication, April 21, 2000). These structures will allow GPs to develop extended primary care teams encompassing community nurses and professions allied to medicine, thereby offering a wide range o f services in a multi-practice framework (Scottish Office, 1997). Designed to Care (1997) outlines some o f the new directions and relationships for primary and secondary care, within this framework: (a) concentration on population needs, (b) increased decision making for local areas rather than local GP practices, (c) multidisciplinary membership in LHCC, and (d) abolition o f the NHS internal market with its emphasis on competition. These changes are still in progress. Modernising Communitv Care: an action plan (Scottish Office. 1998a). The Scottish Office produced this action plan for improving the management and delivery o f community care services by outlining strategies for better collaboration between the statutory, public, and private sectors. During my 1999 research trip, participants stated that a plan was underway for improvements in joint working between Health and Social Services, however, the changes arising from this plan were in the early stages and are still in progress. 31 Nurses’ Roles As discussed in Chapter One, there are various ways o f describing nurses’ roles. Baldwin and Birchenall (1993) offer a description of nurses’ roles in the UK by identifying the role components belonging to all the professional groups in nursing The components are; clinician, helper/counselor, advocate/advisor, manager, teacher/educator, therapist (p. 851). They suggest that with the exception o f the clinician role, all other role components are equally important to each o f the different nurses’ roles in the UK. The clinician role, which is de-emphasized in some community nurse roles, such as those o f health visitors, is often misunderstood as simply the direct or hands-on care involved with nursing procedures. The clinician role does, however, incorporate all other role components, resulting “in a focus o f care that covers all aspects o f an individual’s life” ( Baldwin & Birchenall, p. 851). In Scotland and Canada, the term community nurse is used loosely to refer to community-based nurses. Recent changes in the UK in nursing education have recognized the specialization o f community health care nursing which includes current areas o f practice, as well as new titles for registration (Ross & Mackenzie, 1996). This development brings together a range of different specialisms including health visiting, district nursing, school nursing, learning disabilities nursing, general practice nursing, community children’s nursing, public health nursing, and community mental health nursing, in a core educational course (Northway & Walker, 1999; Ross & Mackenzie, 1996). Differences still persist, however, in relation to entry requirements, length o f courses, the status o f the qualification, access to educational opportunities, and the terms, conditions, and settings for work (Northway & Walker, 1999). The National Board for 32 Nursing, Midwifery, and Health Visiting for Scotland (NBS) is the statutory body responsible for ensuring standards o f education and training for nurses, midwives, and health visitors in Scotland. In my research, I often refer to the roles o f health visitors, district nurses, school nurses and learning disabilities nurses, as well o f the roles o f a variety o f nurses in specialist posts under the general term nurses, or health visitors and other nurses Where I use the broad categories, it is either for ease o f description, or for maintaining confidentiality, and I intend no disrespect by not acknowledging distinct qualifications. District nursing and health visiting are the two most traditional community nursing qualifications. In order to work in either, nurses and health visitors now qualifying are required to have a degree. There are a variety o f arrangements by which nurses who were previously qualified without a degree can seek further education. Individuals working towards a health visitor qualification are referred to as student health visitors (A. Kiger, personal communication, September I, 2000), and they work under the direction o f health visitors. Among the discussions that are ongoing among the different divisions of community nursing is whether or not there will be a shift toward further specialization, or toward a single generic community nurse role (Northway & Walker, 1999). There are many changes taking place in nursing education in Scotland and the UK, but the details are outside the scope o f my research. Children with Special Health Care Needs in Scotland The term, ‘children with special needs’, is used in Scotland more commonly than ‘children with special health care needs’ This latter term represents a significantly 33 smaller subgroup, generally consisting o f children with more complex health problems and care requirements. For ease o f description, however, I use the terms interchangeably to describe children with a range o f conditions including chronic illnesses, physical disabilities, congenital and developmental problems, and learning disabilities. A number o f children with special needs, for example, those with cerebral palsy, may have a combination o f the preceding conditions. It is difficult to estimate the number o f children with these special needs in Scotland and the UK, because estimates depend on the choice o f concepts and the methods used (Lindsay, Kohls, and Collins, 1993). From the Office o f Population and Census Survey (OPCS) 1989 estimates, however, there were 360,000 children under 16 with special needs in the UK, and in Scotland there were approximately 30,000 such children (Lindsay et al., 1993). In Aberdeen alone, an estimated 1200 children with disabilities live in private households, among whom are those requiring care and support due to visual or hearing disabilities, long term health or development difficulties (Aberdeen City Council and Grampian Health Board, 1997). Local and regional planning is still underway in Grampian to further identify needs and develop services. The Setting I conducted my research in two regions o f Scotland, the Grampian region, and to the south, the kingdom o f Fife Because I lived in Grampian, and conducted most o f my research there, I will provide some details specific to it. Grampian covers the north-east portion of Scotland bordering the North Sea, and a broad area o f towns and villages inland. The city o f Aberdeen, with an approximate population 215,000, is the largest city and a seaport and centre for the massive North Sea oil and gas industry. The Grampian 34 Health Board is the health authority responsible for the region. In 1997, within the city o f Aberdeen, Grampian Health Care Trust provided health services delivered in the community and Aberdeen Royal Hospital Trust was the provider of acute care services. The Trusts have now been re-organised as I indicated earlier. Local authorities, through their Social Services departments and in partnership with Regional Health Boards, are responsible for the delivery of community care services, as defined by legislation and discussed fiilly in Chapter Three. Within Grampian, Aberdeen City Council is the local authority for the city of Aberdeen, while Aberdeenshire Council is responsible for the area of Grampian outside Aberdeen. This section has provided information and terms that will, I hope, assist the reader who is unfamiliar with them. In the section that follows on research design, I lead the reader on my own research path in Scotland. Research Design This research employs a qualitative approach in order to generate knowledge concerning nurses’ roles. The focus o f the research is an exploration of the relationship between government policy and nurses’ roles fi’om the perspective of nurses and others involved in the provision o f services to families. The research design shapes the structure o f the exploration, and describes a flexible set o f guidelines that connects theory to strategies of inquiry and methods for collecting data (Denzin & Lincoln, 1994, p. 14). Dreher (1994) says that the most important element in design is the consistency between the method (methods) and the research questions, the phenomena being studied Research also requires a consistency between the method and the belief systems or perspectives that guide the researcher in her/his particular worldview (Denzin & Lincoln, 35 1994). In this section I discuss the research design in relation to the research approach, theoretical perspectives, and the methods through which my exploration occurs. Research Approach In preparation for my research, I initially developed a proposal to conduct a comparative study of nurses’ roles with families/children with special health needs in Scotland and British Columbia. As my research in Scotland progressed, I realized there was richness in the emerging data that was complete in itself and would serve a Master’s thesis requirements. My original proposal also included an intention to explore not only policy, but also programs, and nursing education and their influences on nurses’ roles in Scotland. As I began to meet and talk with participants, their stories and descriptions centred on policy, and thus, I later declared policy as the focus o f interest. A qualitative approach invites this openness to discovery, and to what emerges in the data. It emphasizes the value and validity o f the subjective experiences o f participants and locates their experiences in context (Driscoll & McFarland, 1989). The data that emerge in a qualitative study are thus fundamentally suited for locating the meanings people place on the events, processes, and structures o f their lives, and for connecting these meanings to the social world around them (Miles & Huberman, 1994, p. 10). In seeking ways to understand roles in a policy context, a qualitative research approach is, therefore, consistent with my purposes, and enables me to describe, explore, and interpret the phenomena. Although a qualitative approach provides the broad direction and methods o f research, the methods o f data collection and analysis are not neutral, but are shaped by a theoretical perspective (perspectives) that focuses the inquiry (Driscoll & McFarland, 36 1994). Within these perspectives are philosophical principles that guide the research in three major areas; (a) ontology, which poses the question, “What is the nature of reality?”, (b) epistemology, which asks, “What is the relationship between the inquirer and what is known?”, and (c) methodology, or “How do we know the world, or gain knowledge of it?” (Denzin & Lincoln, 1994, p. 13). Research perspectives thus guide the questions that are asked, how they are asked, who is asked, and even how the responses are heard, or attended to and interpreted. Theoretical Perspectives I explored three main theoretical perspectives during the research process feminist, critical social theory, and role theory/ This exploration is consistent with the views o f Denzin and Lincoln (1994), who suggest that the researcher as theorist works “between and within competing and overlapping perspectives and paradigms”, and hence, the value o f combining multiple methods and perspectives is a strategy that adds rigor, breadth, and depth to any investigation (p. 3). I will briefly describe the perspectives. Feminist and critical social theories. Both feminist and critical social theories contribute to the philosophical assumptions guiding my research, as well as to my critique o f role theory, from which traditional analyses o f role and role concepts are derived Feminist and critical social theories share some common assumptions: (a) that all research, theory, and practice are political because the social, economic, political, and historical processes of society affect then^ (b) that oppressive power relations are common in society, and (c) that research provides the potential for emancipatory change (Reinharz, 1992; Campbell & Bunting, 1991; Stevens & Hall, 1992). Theorists within each perspective agree that knowledge is ' There is no single feminist, critical social or role theory, although each is often expressed in the singular. 37 socially constructed and that, in order to understand patterns o f human behaviour, it is necessary to understand “personal meanings o f social structures and the communally agreed upon meanings o f those structures” (Campbell & Bunting, 1991, p. 10). Those meanings are implicated in relations o f power and knowledge that regulate what is considered to be reasonable and true (Kincheloe & McLaren, 1994), meanings which some feminists term, taken for granted (Olesen, 1994). Taken-for-granted meanings are those which are accepted “without question or objection”; they “are assumed” to be (Random House Dictionary, 1987, p. 831). Kincheloe and McLaren (1994) assert that the oppression characterizing contemporary societies is most successfully maintained when subordinates accept that position as natural, or necessary (p. 140). In other words, the relations o f power, and even their effects on individuals or groups, are taken for granted. Critical social theory is primarily concerned with understanding patterns o f human behaviour by understanding social structures (Calhoun, 1995) and the power within them. Stevens (1989) says that the ultimate goal o f critical social theory is to facilitate liberation from constraining social, political, and economic circumstances. Critical social theory, while not opposed to helping the individual, is primarily concerned with knowledge for the emancipation o f all humanity or o f particular oppressed groups (Campbell & Bunting, 1991). In the critical theory paradigm, knowledge and its creation and interpretation are grounded in language (Campbell & Bunting, 1991, p. 5). This orientation to language is o f interest to the study o f policy because it points to the symbolic and value-laden nature o f words and text (Alasuutari, 1995; Campbell & Bunting, 1991). In this view policy analysis can be a means to exposing hidden power 38 imbalances and unstated but implied intentions. These analyses direct us, as Smith (cited in Kirby & McKenna, 1989) suggests, to “examine who produces what for whom [and] where the social forms o f consciousness come from” (p. 33), a process which can have potential for liberation. As part of their interest in liberation, feminist theorists have tended to focus on division and domination according to gender as their primary interest (Campbell & Bunting, 1991). Post-modern feminist approaches have, however, been expanding their areas of interest and analyses to those who, as Kirby and McKenna (1989) suggest, “find themselves on the margins” (p. 33). The margin is the context in which those who suffer injustice, inequality and exploitation live their lives, not only in terms o f unequal distribution o f resources, but also in terms of knowledge production (Kirby & McKenna, 1989). It is also, therefore, where dominant groups establish their social values and norms. Research from the margins is o f interest to professions such as nursing, in which the roles of nurses, and o f the women and families with whom they work, are often devalued, as my research demonstrates. Feminists are interested in the personal, the individual experiences o f nurses and families, while also emphasizing the relationship between the personal and political (Reinharz, 1992). The relationship between the two emerges in my research in the relationships between roles, and between policy and nursing practice. Feminist and critical social theories also share some commonalities with regard to research methods. Theorists in both areas may cross disciplines, and may also involve multiple perspectives and multiple methods, which can be both quantitative and qualitative (Reinharz, 1987; Campbell & Bunting, 1991) Both feminist and critical 39 social theorists question the power base that researchers have traditionally employed as creators o f knowledge (Campbell & Bunting, 1991). A difference, however, is the feminist condition that researchers and participants should be equal partners, a view that critical theorists critique as an example o f how hidden power imbalances can be overlooked (Campbell & Bunting, 1991). A feminist perspective confirms the importance o f the researcher’s voice. On the use o f I by the researcher, Riger and Gordon (cited in Reinharz, 1992) suggest that the active instead o f passive voice is a revolutionary change for social science research, “since it acknowledges that the research was done by a human being, with human limitations” (p. 212). Thus I have introduced my voice, and some o f my experiences into the research, while at the same time attempting to avoid cross cultural assumptions or comparisons. Feminists also confirm the importance o f minimizing the distance and power relationship that can arise between the researcher and participants (Acker, Barry, & Esse veld, 1991). Harding (1987) says, for example, that we need to avoid the detached stance “that attempts to make the researcher’s cultural beliefs and practices invisible” (p. 9). Thus, I have avoided the use o f language that belongs to traditional experimental science, for example, the word subject. Using the term participant instead of subject is, according to Reinharz (1992) a signal that the researcher is operating in a feminist framework. I have also attempted to avoid the use o f academic jargon that is often confusing, but more importantly, may create distance between the researcher and others. Where I do use academic terms, I strive for clear definitions. 40 Feminists value the voices o f participants, whereas in critical social theory investigations, dialogues generally tend to be scarce (Campbell & Bunting, 1991). Both feminists and critical social theorists recognize, however, that language itself is often incongruent with the realities o f individual experiences, and implicated in relations o f power (Devault, 1990; Kincheloe & McLaren, 1994). Language can, therefore, be used to mask or obscure meanings. Feminist theories advocate a deconstructive^ strategy (Hooyman & Gonyea, 1995) that searches for and reveals implicit meanings and hidden assumptions. I have employed a deconstructive strategy in my policy analyses, and in my critique of roles and role theory, both in the following section on role theory, and throughout the thesis. Role theorv: an overview and critique In Chapter One, I introduced role constructs derived from role theory, including those upon which nursing tends to rely. In this section, I provide a theoretical overview o f various interpretations of role theory, which have been useful in assisting my early understanding and critique of the concept o f role. Feminist and critical social theories have helped to guide this effort. Calhoun (1995) acknowledges the early contribution of role theorists, in suggesting that the sociological analysis o f role was a step beyond the essentializing o f biological or psychological human identity, and it facilitated recognition o f the construction o f self in social life (p. 198). Among early role theorists, Biddle and Thomas (1966) described role theory as a new field o f inquiry concerned with the behaviour o f a given individual, an aggregate o f individuals and groupings o f individuals ^ The constmctivist or interpretevist believes that to promote understanding one must “elucidate the processes of meaning construction” and thus uses strategies to clarify how meanings are “embodied in language” (Schwandt, 1994, p. 118). 41 who display given behaviours. Among early theorists, the so-called ‘functionalists’ provided theoretical constructs derived primarily from the domain o f psychology and earlier psychoanalytic studies, which emphasized the expectations and behaviours or functions associated with roles (Biddle & Thomas, 1996). Later role theorists included the stream called symbolic interactionists, who focused on face-to-face micro level interaction (Johnson, 1993, p. 115). Lopata (1991) suggests that these interactions are located and examined in the family, religious, political or work organisations, thereby pointing to the complexity o f interaction involved in each role (p. 3). Some role partners, for example, those within the role set o f the family, are familiar, may seldom change or have little difference in status, whereas more complex role sets, those involving role partners who are differentially located in the social structure in terms of status, may include unpredictable and changing expectations or responses (Coser, 1991). In this view, roles do not result solely from a shared meaning, but also from negotiations (Armstrong & Armstrong, 1996, p. 40). Yet as Armstrong and Armstrong point out, the theories do not explain why women so consistently lose in their negotiations, and why their work is culturally devalued (p. 40). Much of Parson’s early work in the functionalist stream of thought concerned men and women, and the division o f labour in the family (Johnson, 1993). He tended to see the power divisions between generations, such as parents and children, but viewed distinctions in the family between men and women in terms, not of power, but frinctions; the male as instrumental and the female as expressive (Johnson, 1993). Feminists have criticized his work, in which roles appear neutral, with men and women - husbands and wives - filling different but equal roles (Johnson, 1993; Lupton, Short & Whip, 1992). 42 To a large extent, nursing research literature reflects this taken-for-granted perception o f roles as being neutral. Roles are commonly viewed in terms o f tasks, activities, and behaviours, or they are studied in terms o f ways in which nurses conceive their roles, or are socialized to them Feminist theorists disagree with these implications, which imply an uncritical acceptance o f appropriate behaviour (Armstrong & Armstrong, 1996, p. 42) linked to a cultural norm That roles are located in culture contributes to their formation. For example, cultural norms create the expectations that support role behaviours, where a norm is an idea in the minds o f members o f a group about what the members or others should do, or be expected to do, under given circumstances (Biddle & Thomas, 1966). Cultural values are the attitudes and beliefs that justify the norms (Strader & Decker, 1995). Armstrong and Armstrong (1996), in a critique o f role theory, suggest that by focusing on the norm, a well accepted alternative pattern (to a behaviour) becomes identified, not as an alternate pattern, but a deviant one (p. 128). Calhoun (1995), a critical social theorist, offers a further critique in suggesting that culture is not a static collection o f norms, values and beliefs, but it is a dynamic dimension o f social practice. This view underlines the unpredictable and changing nature o f roles themselves. Feminist and critical social theories thus bring new perspectives to the study o f nurses’ and other roles. In challenging taken-for-granted assumptions concerning roles, these theories point to their unpredictable and changing nature, to the power differentials that exist within the contexts in which nurses’ roles are situated, and to the relations of power and their contribution to role change. 43 In summary, theoretical perspectives provide, not only a way o f seeing the world and the phenomena being studied, but also a way o f doing the research. This process o f doing is what research is ultimately about Said, cited in Kirby and McKenna (1989) states that research is, in essence, an activity that occurs in a time and place by a specifically located person for certain ends (p. 32). The methods o f data collection, which I now describe, are central to that activity. Methods o f Data Collection A qualitative approach enables the researcher to use multiple methods to access information or data. I employed several methods that contributed to gathering information including participant interviews, the interview setting, site observations, and document analyses Before disussing each o f these, I will describe the participants in my study and how they came to be participants. Research participants. Research participants are not required to be experts. Their contribution is knowledge, experience or both depending on the nature o f the research. Participants must be willing and able to critically examine their experience, or the phenomenon, and their response to it (Morse, 1991). My research participants fulfilled two important criteria; they had knowledge and experience o f roles and work, either with the nursing care o f children in the community, or with the needs o f families or provision o f services to them, and they demonstrated a willingness to offer their experiences, insights, and concerns. Participants were nurses who worked in a variety of community nurse roles, and other women and men from social services, health administration, education, research, and the voluntary sector. 1 have not identified the specific roles or programs to 44 which individuals were attached because o f confidentiality issues, which I discuss later in this chapter under special considerations. During the course o f my research, I also obtained information from those involved in a Respite Special Interest Group meeting in 1997 in the Grampian region, where I received permission to take notes from the discussions. I did not identify or quantify the meeting participants, among whom were families, carers, and others from statutory and voluntary sectors, however, I have included some o f their views and experiences concerning respite care in Chapter Five. In Appendix A, I provide a summary o f the number of research participants I interviewed, their broad role categories, and the time periods for the two stages o f my research in Scotland. I perceived initially that the role diversity among my participants, posed a limitation in the research design. However, as the research progressed, I found that the diversity contributed to the depth, as well as the confirmability (Miles & Huberman, 1984) or validation o f the data. Participants from the voluntary sector brought perspectives on the needs o f families that confirmed the views o f nurses, and at times, also offered alternate views. The contributions o f both nurse and non-nurse participants added to the richness and scope o f the data, and helped to address questions pertaining to policies, services and perceived needs o f children and their families. My contact with participants occurred in two stages, the first in the fall o f 1997. In the first stage o f data collection, I conducted individual interviews, and one focus group interview, each approximately sixty minutes in length. Eighteen months later in the summer o f 1999,1 conducted individual interviews with a sample o f my original participants, and a focus group interview with most o f my original group. The focus 45 groups consisted o f health visitors and health visitor assistants, the latter, registered graduate nurses who are qualifying as health visitors. In beginning my research, one o f the challenges was to find participants in a country where I knew almost no one, and had chronic problems with the phones in public boxes. In my initial efforts to obtain participants, I turned to methods o f nomination and network sampling, that is, finding key individuals to recommend other knowledgeable, interested participants (Morse, 1991). Dr. Stuart Watson, Coordinator o f the MSc program at the time in Aberdeen University’s Department o f Public Health, provided some names and telephone numbers, and an office fi'om which I could make telephone calls! As the research progressed, my contacts and participants recommended others, and the network process expanded. I had hoped to locate participants in both rural and urban areas o f Scotland. When my participants spoke o f the rural areas, I thought o f rural in terms of, for example, the north o f Scotland and the Orkneys I later learned that rural, in Scottish terms, could mean fifteen miles or so outside Aberdeen! I was able to interview some participants who worked in rural areas, but was unable to achieve the balance o f urban and rural participants I had intended. Most o f my participants worked in Aberdeen, or provided services ftom Aberdeen throughout the northeast of Scotland, while a small number worked in the neighbouring region o f Fife. Interviews. My primary method o f data gathering was through the use o f semi-structured interviews both with individuals and in focus group discussions. Key questions and probes, included in Appendix B, provided opportunities to guide the research and seek 46 clarification on certain points, while open-ended questions enabled participants to describe perceptions and experiences in their own words Reinharz (1992) suggests that open-ended interview techniques produce non-standardized information that allows researchers to leam from the differences among people Because o f the diversity o f roles among the various participants, individual interviews provided the most usefril way o f gaining both depth and scope in the information-gathering process Thus, I was able to access information about roles, services, and trends and the context in which these were situated, and my research participants were able to discuss their experiences, as well as explore areas they wished to develop or have me understand The focus group interview process was also extremely valuable A key benefit o f focus groups is that attitudes and perceptions, for example, those regarding nurses’ roles, are not developed in isolation, but through interactions with others (Morse & Field, 1995). These group interactions contributed to the richness of the data as participants in the group clarified, responded or reacted to one another’s points o f view Recording. During the individual interviews, I took extensive notes to which I added, usually within twelve hours, additional notes and observations. I felt I could manage these interviews with note-taking and thereby avoid the presence o f a tape recorder, which is intimidating for some people. For the focus group discussion, however, which involved eight nurses, I used a tape recorder and later transcribed the conversations into text. Throughout the research, I have also kept a research journal in which I have written my impressions, reactions and comments regarding the research process itself. Before I left for Scotland, the late Dr. David Fish, my first research advisor, suggested I would return 47 with two possible theses, one that I gathered from participants, and one gained from the research process itself. He was correct! Interview setting. A key criterion in selecting the interview setting is that it is conducive to a sense o f equality between the person gathering information and the person whose knowledge is sought (Kirby & McKenna, 1989). This is important because o f the potential for an imbalance o f power in the relationship between the researcher and participants, to which setting may contribute. Thus I conducted the interviews primarily in the offices or meeting rooms at participants' work sites, which met my criterion for neutrality, as well as that of convenience, for people working under time constraints Site observations During the course o f my research, I had the opportunity to visit two community care settings in Fife and Grampian to observe the care o f children with special needs. The visits provided a context in which I could visualize the nature o f care for children in small community facilities. These observations were separate from the interviews o f my research participants. The interactions with staff were informal and I did not take extensive field notes. In other words, when I observed the setting and the care required by the children, I was not simultaneously interviewing or observing participants. This is an important distinction because one o f the problems with validity in participant observation is the change in behaviours o f participants when the observer is present (Morse & Field, 1996). During the time period when one o f the site visits occurred, I did have the opportunity to speak informally with a group o f licensing officers responsible for 48 enforcing standards in licensed community facilities, some o f which were homes for children. Unfortunately, the extent and nature o f their concerns was beyond the scope of my research, and therefore, I have not included these individuals as participants. Documents. The review o f documents provided an unobtrusive way of gathering information (Marshall & Rossman, 1995) regarding policies, particularly from documents that were not readily available in British Columbia. These included UK government and Scottish Office policy documents pertaining to health and community care, UK nursing documents, and policies pertinent to the care o f families and children with disabilities or other special health care needs. Relevant documents were purchased, photocopied, or annotated to provide information for later analyses. Data Analysis A main task for the researcher is to explain ways that people in particular settings come to understand, account for, take action, and otherwise manage their day to day situations (Miles & Huberman, 1994, p. 7). The researcher strives to achieve this through analyses o f the interview data, although data collection and analysis may occur concurrently. The processes o f analysis in qualitative research are intended to reveal multiple layers o f meaning. Morse (1994a) describes the processes that are key to the qualitative approach, among which are comprehending, synthesizing, and theorizing. Comprehending involves learning everything possible about a setting or the experiences o f participants (Morse, 1994a, p. 26), and it evolves through the research. Comprehending is assisted through a thorough review of literature, suspending 49 assumptions derived from the literature or other sources, conducting an active inquiry which includes attending to words and seeking meanings, and making extensive notes and records. The process o f seeking comprehension has been both exciting and overwhelming. I read extensively prior to and during my term in Scotland in order to gain an understanding o f the context in which nurses’ roles and work are situated. I attempted to suspend my assumptions in order to view experiences from the participants’ perspectives. I also read extensively following the stages o f data collection, in order to compare my findings with the literature. Active inquiry is also critical in aiding the process o f comprehension. So much was new and unfamiliar, including words, such as Trusts and fundholding, and for some words, I immediately sought clarification in documents or discussions. However, while some words and phrases I heard appeared familiar, they actually conveyed different meanings, although at times I was unaware o f the differences. For example, when a participant referred to the voluntary sector I erroneously assumed this meant volunteers (unpaid), and learned only later, that it referred to the non-profit sector. On another occasion, when a nurse said she was “chuffed” about an aspect o f her work, I initially equated the meaning with the Canadian colloquialism huffed, which is virtually opposite to the meaning pleased, that she intended! I gradually learned to clarify meanings of words and not make assumptions about them. Coding, a central process in data analysis, helps with comprehending as the researcher sorts the data and uncovers underlying meanings in the text (Morse, 1994a). The idea o f coding, or indexing, is that the researcher applies a uniform set o f headings 50 and sub-headings at relevant points (Mason, 1996) in the production or review o f the text. Meanings and patterns emerge through sorting the descriptions and stories into smaller and smaller categories. I made a brief attempt at coding by using a computer program designed for qualitative research analysis, but I found I wanted a more tactile connection with my data through pen and paper Even with that, however, my initial efforts at coding were inadequate, as I tried to fit the descriptions o f participants into categories such as health promotion activities. After periods of reflection and writing, I began to recognize that what nurses and others were saying about nurses’ roles and services to families could not be readily categorized, because they were in a profound state o f change. The process o f comprehending thus gradually shifted to the next stage, synthesizing, the sifting part o f analysis (Morse & Field, 1996), which ftirther aided my understanding. Through a process o f ftirther reflection and writing during which I considered the questions, “What are the participants actually saying about role change?” and “In what ways can I understand and realize meanings?”, certain words and phrases caught my attention. This stage was one o f immersion in the data. I heard in my dreams and waking hours the voices and experiences o f my Scottish participants. My experiences of immersion in the data are consistent with van Manen’s description (cited in Bergum, 1991) of thematic analysis as “a deeply reflective activity that involves the totality o f our physical and mental being” (p. 65). Eventually, through further sifting, reflecting, and writing, patterns began to emerge as dominant themes. As an example, health visitors had provided various descriptions that indicated changes in and constraints 51 to their roles, arising in the context o f the GP practice. My theme, GPs are directing health visitors work in the context o f the GP practice, reflected their descriptions. Patton (1990) says that interpretation means the researcher goes beyond the descriptions, and through an inductive process, begins to attach meanings and significance, offer explanations, make inferences, make the obvious obvious, and the hidden obvious (p. 423). For a time, I stepped back from my themes and descriptions and began to notice relationships between them, all linked to roles, role change, and the organisational and policy context in which changes were occurring. I turned to theories to seek further understanding o f policies, organisations, change, and the nature o f roles themselves, thus gradually shifting to theorizing. In some cases, I then re-named my themes. Thus, in the example o f the theme I gave earlier, GPs are directing health visitors work, I re-named the theme. Role conflict, to reflect succinctly what I understood my participants to be saying. Within this theme, I identified smaller categories or sub­ themes, such as Hierarchy, which gave a focus for ftirther interpretation and understanding. I chose, as Patton (1990) suggests, quotations from participants themselves to retain the link between their experiences and the emerging theory. These quotations are included in the theme headings in the findings chapters. The process o f theorizing requires asking questions o f the data that either will create links to established theory (Morse & Field, 1996), or from which theory will emerge. I had begun to see ways in which nursing theory is linked to taken-for-granted notions derived from role theory, and my research forced me to challenge these notions. My research is thus grounded in the experiences o f nurses and in the experiences of others who work with families and children in Scotland. The nature o f these experiences. 52 and the ways in which they are perceived, contribute to the discipline o f nursing, and to ways o f conceptualizing nursing. This relationship is consistent with the view that the practice of nursing informs and also challenges nursing theory development through conceptual meanings (Chinn & Kramer, 1995, p 160). According to Chinn and Kramer (1999) the approach is also consistent with grounded theory methodologies which, while initially inductive, also use deductive approaches to examine propositions o f theory (p. 123-4). Issues o f Rigour Among the criteria that have been identified for maintaining rigour in qualitative research are: truth value/credibility, applicability/fittingness, auditability/consistency, and confirmability (Morse & Field, 1996; Sandelowski, 1986). Sandelowski (1986) describes a study as credible when other people can recognize the experience when confronted with it afrer having only read about it. Credibility is strengthened by confirmability, which is achieved when the participants are given the opportunity to review and validate the research findings. One o f the ways in which I have demonstrated credibility and confirmability is by validating my preliminary findings by means o f a second set o f interviews in June 1999. On this occasion, I selected a sample o f my original participants according to the needs o f my study (Morse, 1991) at that time, in other words, those who had a breadth and depth o f knowledge that would enable them to critically appraise my findings. With my participants, I reviewed a four page summary o f my findings, including the themes and their descriptions. In seven individual interviews and a focus group discussion, participants confirmed the five major themes that I had identified, and the written 53 explanations that I provided. Some o f the participants in the focus group, while confirming that GPs are directing health visitors’ work, did not agree with my interpretation as one o f potential or actual conflict. One health visitor expressed the view that the current arrangement was better for practice. Another nurse participant said, however, “It’s not potential, it’s real, ” a view also confirmed by others. These differing views are described in the findings. Most of the participants added to the information I reviewed with them, that is, they identified further changes and their effects, both positive and negative, on practice and service provision. Only the final theme, issues in respite care’, has been re-named to include the two themes discussed in Chapter Five, however, the issues are similar. While validation strengthens credibility, Morse (1991) suggests that bias can threaten it. In Morse’s (1991) view, bias may arise from one’s role as an insider who has closeness to the subject. Because 1 have had in depth clinical and consultative experiences working with families and children with special health needs, and was studying a peer group, 1 initially perceived a risk o f bias. Kirby and McKenna (1989) assert, however, that the more familiar the researcher is with the experience being studied, the better is the potential for understanding. Olesen (1994) reinforces this view in stating that bias is a misplaced term. She says that if the researcher is reflexive, that is, thoughtful about the research process and the researcher’s place in it, she or he can evoke these experiences as resources that contribute to new perceptions (Olesen, 1994, p. 165). The use of ajournai during the research process, as 1 indicated using, assisted me to clarify the nature o f my knowledge and influence. One limitation in my research is likely 54 in my failure to contribute from my experiences to the extent that some participants would have liked. Applicability o f the research can be demonstrated through its fittingness, which means that the findings fit or can be transferable to contexts outside the study situation, and are well grounded in the typical and atypical elements o f the experiences studied (Morse & Field, 1996; Sandelowski, 1986). Patton (1990) says that it is important to understand that, in qualitative analysis, the emphasis is on understanding and extrapolation, not on prediction and generalization (p. 424). Extrapolations are speculations about the likely applicability o f findings to other similar, but not identical conditions (Patton, 1994). The nature o f my research would indicate that the findings are applicable to nurses and families in Scotland, where changes o f a similar nature have been taking place subsequent to the reforms, although specific situations and the organisational responses across regions vary. For example, some regions have developed children’s community nursing teams to provide support to families at home. Similarly, there are insights and issues that arise in my findings that may be applicable elsewhere to nurses, families, and other carers caught in rapid shifts from institutional to community-based care. For example, my site observations confirmed that the care requirements for children with special health care needs in a small community home in Scotland, and the approaches to care provision, are similar to those I have seen in British Columbia Auditability, a third criterion for demonstrating rigour, refers to a conceptual trail o f evidence by which interested parties could reconstruct the research process (Morse, 1994b). This includes ordering and dating field notes to keep interviews and any changes 55 in context (Morse & Field, 1996). I have done this in both field notes and journals, within the requirements for confidentiality. Confirmability is achieved when auditability, credibility and applicability are established (Morse & Field, 1995, p. 33). Sandelowski (1986) describes confirmability as neutrality. I would, however, challenge the need for neutrality which would contradict the contribution o f the researcher’s own ethical and emotional relationship with the inquiry and the participants (Clandinin & Connelly, 1994; Reinharz, 1992). Special Considerations The unique nature o f my research, conducted as it was in another culture, introducted special considerations regarding cultural sensitivity. Other special issues are o f an ethical nature, important to any research. I discuss each. Cultural sensitivity. As a guest at the university and visitor in Scotland, I wanted to demonstrate cultural sensitivity through my interest in and respect for traditions and views that might differ fi’om my own. Arising fi’om these differences, however, there are also risks in conducting research in another culture. As Calhoun (1995) states: We face difficulties in interpreting social life that is differently constituted fi’om our own; our resources for making sense o f it, for giving meaning to what we can observe o f it, derive from our own culture and fi'om previous experience.. we run the risk o f failing to grasp meanings operative in other contexts while constituting for ourselves meaning that were not at work there, (p. 49) As a Canadian graduate student and nurse, with knowledge o f and experience in Canadian nursing and policies, I had no first hand experience with the history and culture o f Scotland, or their implications for Scottish nurses and families. I felt it vital that I 56 maintain an awareness o f the historical and cultural experiences which might differ from or be similar to my own, while making no assumptions about either For example, nursing in Canada is a gendered profession, composed primarily o f women whose work is lower in status, autonomy, and pay than that o f physicians. Yet there are variations among and between nurses’ roles As a nurse working in the community in British Columbia, my work has involved a relatively high degree o f autonomy. I do not take orders from physicians, and they are not responsible for directing the work that I do. However, some o f my experiences have been unique to my nursing roles and not necessarily to nursing in Canada. In recognizing the diversity within Canada alone, I felt it was important to suspend assumptions about the nature and organisation of nursing in Scotland. These considerations guided my research approach. Ethical considerations. Issues of vulnerability, consent and confidentiality are critical considerations in any research, and I addressed them in the following ways: (a) vulnerability This refers to the risk o f harm that may be posed by the researcher during the research process. Before I initiated my research in Scotland, I sought ethical approval from the University of Northern British Columbia’s graduate research ethics committee, which I later received, see Appendix C. Faculty in the Department o f Public Health at the University of Aberdeen also reviewed my proposal before I initiated the project. Although my research did not warrant the high degree o f concern required with vulnerable groups or individuals, it held some ethical considerations. Nurses in Scotland 57 are predominantly women, and the focus o f discussion was about primarily women in families caring for their disabled children In doing research with and about women. Finch (1990a) suggests that, if one takes the view that the powerful are fair game for the researcher, then women in patriarchal societies are always relatively powerless. Gender relations cannot be divorced from the context that makes them essentially political questions (Finch, 1990a). Although uncertain o f the implications o f gender for nurses and women in Scotland, the potential vulnerability o f some participants heightened my awareness. (b) Consent and confidentiality Consent and confidentiality procedures are important considerations in any research. Measures were taken to obtain participants’ consent and to protect their confidentiality. Participants volunteered, either by contacting me or by responding to my invitation for their involvement. When I had sufricient time before we met, 1 forwarded a letter, see Appendix D, outlining my research project and discussing relevant issues o f consent and confidentiality. There was only one incident during the research process, when afrer revealing a sensitive issue, a participant expressed concern about confidentiality. Despite the absence o f expressed concern by others, I have taken suggested measures (Morse & Field, 1995; Morse, 1991) to protect the confidentiality both o f participants, and the information they provided. These efforts included; (a) ensuring audiotapes were stored privately, (b) maintaining anonymity by using a numeric system in place o f names, (c) changing or eliminating non-essential information, such as a location, sex or age o f an individual or their health circumstances, which has no relevance to the discussion but could potentially be revealing, and (d) assuring 58 participants that they were not required to provide any personal information in their efforts to contact me through the departmental secretary. Morse (1994b) underlines the importance o f these efforts to ensure anonymity for the participants, and states that the text should not identify which informants provided quotes, nor should quotes be tagged with participant numbers that may place them at risk o f being identified (p. 232). I also provided my participants with the name and contact number for Dr. Alice Kiger, Director, Centre for Advanced Studies in Nursing, in case they had any questions regarding my research. Dr . Stuart Watson, co-ordinator o f the MSc program at the University’s Department o f Public Health, in which I was studying, was also available to assist me and to be a research contact. Summary In this chapter, I have provided information, which I hope is useful to the reader who is unfamiliar with Scotland. In the findings chapters, information is further expanded and interwoven with the stories and experiences o f the twenty-six participants in the study. This chapter has also captured central elements o f the research process, through which I have asked certain questions, explored theories, heard, and analyzed the stories and experiences o f my participants, and examined their stories in light o f theories. Themes and meanings have emerged firom my analyses and interpretations. In this way, both the researcher and participants are knowers who are centrally implicated in the production and confirmation o f knowledge (Reinharz, 1992). The responses o f my participants to the themes indicate that most would agree with the overall findings, although this does not ensure their agreement with all the interpretations. The 59 contribution of, or error in interpretation is clearly mine. In the following pages of Chapters Three, Four and Five, readers can hear the voices and stories o f my participants and, as knowers themselves, determine where they find meaning. 60 Chapter Three The Organisation o f Care Introduction The findings in my study, contained in the following three chapters, consist o f the experiences and voices o f my participants presented in categories, themes, and sub-themes that have emerged fi^om my analyses and interpretations o f data in light o f critical, feminist, and role theories. Among the participants’ rich descriptions, I also provide a context drawn firom theories, history, policies, and the roles o f organisations, to assist the reader in understanding the organisation o f health and social care in Scotland. In this first o f three findings chapters, I introduce the context for the planning and provision o f primary health and community care services in Scotland. The National Health Service and local authorities, the organisations in which the roles o f many o f the nurses and other participants in my research are situated, also provide a context for policy implementation, thereby linking policy and roles. The first theme, role conflict, explores the impact o f organisational change on the roles o f nurses in their professional relationships with general practitioners. The second theme, role confusion, explores its impact on the roles of nurses in their work primarily with social workers. The introduction o f the community care reforms was the catalyst for many o f the changes and impacts described. The community care reforms that culminated in the NHS and Communitv Care Act 1990 introduced sweeping changes in the organisation and financing o f the NHS and local authorities in Scotland and throughout the United Kingdom. A key feature o f the 61 government’s plan was to “establish an increasingly important distinction between the purchase and provision o f health and social care” (Department o f Health, 1989b, p. 49). As mentioned in Chapter Two, changes affecting the NHS included the development o f Trusts for the provision o f health services, a new role for Regional Health Boards and general practitioners as purchasers, and the introduction o f an internal market to health care. The reforms emphasized a greater role for primary care and strengthened the position o f GPs in setting priorities for primary health care services. In Scotland, primary care is medical care based in the GP practice, distinct from secondary care that is hospital-based care under the direction of consultants. Primary care falls under the over-arching term o f primary health care, the first point o f contact between patients and health professionals (Department o f Health, 1989b). Primary health care professionals include GPs and primary care nurses working outside the hospital who have been prepared through education to deliver primary health care in the community (Ross & Mackenzie, 1996). The World Health Organisation provides a broader definition o f primary health care that will be discussed later. According to central policy in the UK, the drive for change in the NHS should be led by primary health care and GPs working in general practice (Ross & Mackenzie, 1996). In addition to changes in the NHS, the reforms introduced a new role for local authorities in the provision o f community care. Social Services located with local authorities are expected to assume an enabling role rather than one directly linked to the provision o f services. They are responsible for arranging ‘packages o f care’, promoting competition between providers, and strengthening the role o f families, the voluntary, and the private sectors in community care 62 Caring for People states that community care is about the health as well as the social needs o f the population (Department o f Health, 1989b, p. 33). Primary health care services are part o f community care, that is, the health component of community care services. Thus, community care involves both the NHS and Social Services, however, the lead responsibility for community care falls to local authorities. In placing the responsibility for community care with local authorities and their Social Services departments, the reforms also placed upon them responsibility for leading collaborative planning o f services with health partners. The government proposed a “fresh start to collaboration and joint planning” (Department o f Health, 1989b, p. 49), which has had a mixed history o f success and drawbacks. The reforms also introduced new ways o f thinking about health and social care. They emphasized principles o f consumer choice and flexibility o f services, independence, and better value for money (DOH, 1989b), and they introduced concepts drawn from the market place such as purchasing, contracts, efiBciency and consumer satisfaction. This market perspective also introduced new relationships among providers and purchasers, and challenged traditional roles and relationships between doctors and nurses. Health and Social Services, and ultimately between service providers and clients. Although my research was conducted four years afrer the reforms were implemented in 1993, people in Health, Social Services and voluntary agencies spoke about the continuing effects o f these radical organisational changes. Organisational change is not confined to organisations. It also involves the cultures, structures, and practices within both organisations and the wider social context in which they are situated (Itzin, 1995a). Change of a radical nature is likely to engender 63 both resistance and conflict because it often involves scarce resources, divergent interests, and unclear expectations (Kettner, Daley, Weaver & Nichols, 1985). Change within organisations requires alterations in behaviour, interactions (Kettner et al.) and roles. Individuals within organisations typically have a number o f role relationships; for example, nurses have role relationships with doctors, managers, social workers, clients and families. Hugman (1991) provides a perspective on roles and organisations which sets them in the wider social structure; The structures o f organisations must be examined in the context of the wider society o f which they are part, ...the actions o f both workers and management are also affected by the roles and statuses they occupy inside as well as outside the organisation, and these are influenced by other forces such as education, . race, gender, and the family, (p. 64) These perspectives provide a way of thinking about organisations, roles and some o f the role-related themes that emerged in this research with respect to nurses and their role partners: doctors, social workers, and families in this study. Context to the Theme o f Role Conflict Before discussing the theme o f role conflict, I will turn to the context in which role conflict is situated. This context includes the historical relationship between nurses and doctors, the history o f the health visitor role, and the current concept o f primary health care in the United Kingdom. The Historical Relationship between Doctors and Nurses In the literature, it is clear that there has always been a tension between nursing and medicine. In the early days of organised nursing in Britain, Florence Nightingale addressed this tension: 64 Nursing and medicine must never be mixed up It spoils both, keep medicine and nursing perfectly distinct. Do not let a nurse fancy herself a doctor. If you have medical women let them be as entirely distinct from nurses as medical men are. a smattering o f nursing does a doctor good. A smattering o f medicine does a nurse harm. (Rafferty, 1996, p. 44) Nursing and medicine are not, however, distinct. For the most part, nursing interests have been, and continue to be subordinated to more powerful groups such as the medical profession (Witz, 1994). In the past forty years, nursing has fought to relinquish the tradition o f handmaiden to the doctor (Pietroni, 1994), one which saw nurses trained by doctors, subject to doctors’ orders, and assistants to doctors. In an effort to achieve professional status, nursing has been shaped by a proximity to medicine. In the struggle for greater power, nursing has shifted between aligning itself with medicine, and seeking autonomy through a distinct theory and practice. Nurses’ struggles have involved and do involve not only the disciplines o f medicine and nursing but also those within the nursing hierarchy itself. Conflicts within the nursing profession over the relevance o f nurse education and leadership gradually led to the introduction o f the concept o f the manager-nurse, and ensured that nurses had an effective voice on management committees (Pietroni, 1994). Nursing in Britain made frirther gains following the Project 2000 report concerning nursing education, which shifted the education o f nurses to academic settings (Pietroni, 1994). In the mid 1980s, however, the government introduced the Griffiths Report with its concept of ‘general management’, a strategy that was intended to reduce the power o f doctors in the NHS through the introduction o f general managers and the methods o f business management (Neave, 1994). Although doctors managed to retain much o f their power in the new structure, nurses lost the representation they had achieved on the 65 decision-making bodies (Neave, 1994). With no clear roles in management and no power in decision-making, nurses who had previously provided a voice throughout various levels o f the NHS, became effectively silenced (Neave, 1994). While general management diminished the power o f the nursing profession generally, the community care reforms o f the 1990s had significant impacts on the role o f nurses in the community. New fiscal arrangements between the National Health Service and GPs provided GPs with greater financial incentives for preventive care. It also introduced the option for GPs to become fimdholders, an arrangement that offered the opportunity to purchase or commission services, including the services of nurses in primary health care. Although GP fimdholding ended in 1998, and was replaced by local health care co-operatives (LHCC), the GP practice remains central to the working relationship of health visitors and GPs. Before discussing the implications o f this relationship, it will be usefiil to discuss the history of the health visitor role. History o f the Health Visitor Role Although health visitors have a long history o f working with doctors, their role at its inception was independent o f both medicine and traditional nursing. The health visitor role developed in the mid-nineteenth century in response to the conditions o f poverty, disease, malnutrition, poor sanitation and infant mortality accompanying rapid industrial growth in Britain (McClymont, Thomas, & Denham, 1991). In contrast to sick nursing, it was described as “the work o f home health-bringing” in providing surveillance, education and supportive care to the apparently well (McClymont et al., 1991, p. IS). Initially, health visitors worked with all age groups, but during the latter half of the century, caught between the dominant medical profession and the emerging professions o f midwifery. 66 nursing and social work, their work became concentrated on child health and sanitation (McClymont et al., 1991). As the twentieth century progressed, health visiting fell under the domination o f medical ofiScers of health (Cowley, 1995) where it became more clearly identified with health education and promotion. Successive documents in the UK have since confirmed the focus o f the health visitor role on health education, health promotion, and disease prevention (Cowley, 1995). Policies o f the past two decades have introduced new pressures on health visitors to maintain their role in health promotion and primary prevention For example, the introduction o f general management discussed earlier, affected the roles o f nurses generally but those o f health visitors in particular (Gough, 1997). The nature o f managerial control, with its focus on efficiency, made it increasingly difficult for nurses in the community to defend their work. Health visiting, in particular, was not easily translated into discrete quantifiable episodes (Gough, 1997). The new system marginalized the non-medical, social and community-based approach taken by health visitors and has left health visitors with concern for the long term viability o f their role (Cowley, 1995). Organisational changes introduced by the community care reforms have raised further concerns about the viability of the health visitor role. Prior to the reforms, the NHS employed health visitors. They defined their own priorities and visiting patterns, drawing their caseload fi’om either a defined geographical area or a population served by a primary health care team (Cowley, 1995). In the 1990s, most health visitors became employed by NHS Trusts, and their work became more closely linked with the GP 67 practice. This arrangement has placed the health visitor’s role in a new relationship with that o f general practitioners in primary health care Primary Health Care The concept o f primary health care as a strategy in achieving ‘health for all’ (World Health Organisation, 1978) has gained priority in the UK as well as in other parts of both the developed and developing world. The World Health Organisation (WHO) defines primary health care as: Essential care made universally accessible to individuals and families in the community by means acceptable to them, through their (ull participation at a cost the community and country can afiford. It forms an integral part both o f the country’s health systems o f which it is the nucleus and the overall social and economic development o f the country (1978, p. 2) In 1978, a WHO conference in Alma Ata (in the former USSR) affirmed that health care is a fundamental right for all, and that there is a need for an equitable distribution o f health resources. Participants at the conference argued for the expansion o f primary health care to include multidisciplinary teams who could use non-technological based approaches to help improve the health o f communities (Abel-Smith, 1994). This argument emphasized the importance o f public health and health promotion in fostering health and preventive health strategies for individuals and communities and also the role o f community health nurses as an integral force in the delivery o f primary health care. A common working definition for primary health care in UK government documents is the first point o f contact for people seeking advice, support, and treatment (Ross & Mackenzie, 1996; Department o f Health, 1989b). The WHO definition and this latter one, point to differing and sometimes conflicting views o f health and health care that emerge in the research. 68 Community nurses, GPs, and the practice nurses that GPs employ, have a central role in primary health care. GPs and their practice nurses provide health services in GP surgeries and health centres. Many community nurses also work from this general practice base. Community nurses include primary health care nurses who work in GP practices, homes, schools, clinics and health centres. Among them are health visitors, discussed in the theme o f role conflict. Role Conflict: Health Visitors and GPs in Primary Health Care “So many doctors want to see nurses in a subordinate role.” The community care reforms emphasized the important role o f both GPs and community nurses in the primary health care team. A team is a group o f people who relate to each other to contribute to a common goal (Ovretveit, 1993). Caring for People (1989), for example, recognizes the gate-keeping role o f GPs, while also acknowledging the “skills and expert knowledge” with which nurses are able to assist people (p. 35). In promoting fundamental changes in the organisation and financing o f the National Health Service, however, the reforms also altered the nature o f the working relationship between nurses in the community and general practitioners. The discussion in this section focuses on nurses in the community in their professional relationship with general practitioners. The organisation o f GP practices is central to this discussion. The issues I discuss emerged from the interviews and focus group discussions with health visitors, the only group o f nurses among the participants in my research who were attached to GP practices. The current organisation o f nurses’ roles within the GP practice places health visitors in a situation o f potential and actual role conflict. Role conflict may be described 69 as role expectations which are either conflicting or which are perceived to be incompatible between self and others (Biddle & Thomas, 1966) Role conflict may also be understood as systemic, that which arises from conflicting expectations, values, or practices within a social context. The theme explores the nature o f role conflict experienced by health visitors in Scotland who face pressures to take on the GP practice priorities. Role conflict is explored in three inter related sub-themes: hierarchy, power, and the struggle for autonomy. The Hierarchv The National Health Service is understood to be a bureaucracy A characteristic of a bureaucratic organisation is generally considered to be one that has a clear hierarchy (Williams, Cooke, & May, 1998). However, as A Laing (personal communication, April 21, 2000) pointed out, it may be more accurate to regard the NHS as a distinct hierarchy o f professions. As a demonstration o f power, hierarchies may be seen as the organisational means whereby the actions of members o f certain occupations are controlled (Hugman, 1991, p. 66). Through exploring the ways in which their work is organised, health visitors’ place in the hierarchy can be understood. In Scotland, most health visitors are employed by a community or combined acute care/community Trust within their respective health board regions. In addition to their status as Trust employees, most health visitors along with district nurses, are attached to or aligned with a GP practice. At the time the research was conducted, these arrangements varied, depending on whether the practice was a fimdholding or non-fimdholding one A health visitor explained that in the fimdholding practice, the GP buys community nurse services from the employer Trust. In the non-fimdholding practice, the Health Board buys the 70 services o f the nurses on behalf o f the practice. These arrangements, whereby nurses are employees o f the Trust but also are attached to GP practices raises questions about who is in charge. The nurses’ reporting relationship is to nurse managers employed by the Trust. The link with the GP practice is that o f a member of the primary health care team for the provision o f community nursing services. As members o f a team, both doctors and nurses can make distinct and complementary contributions, but the relationship is not that clear. “Doctors have the budgets,” said a health visitor, “and they want to tell nurses what to do.” Nurses operate within a line management system in which, as noted, they are employees o f the NHS Trust. Doctors work as relatively independent agents (Twigg & Atkin, 1994). This fact alone places nurses and doctors in different positions with regard to status and power. With the power and responsibility to manage their budgets, some GP fundholders may have perceived that they were also responsible for managing the work o f nurses attached to their practice. According to a nurse in a manager role, “depending on the GP practice, nurses may not be able to provide the services they want.” The GP fimdholding arrangement is no longer present in Scotland or the UK. As I noted in Chapter Two, GP fimdholding has been replaced with local health care co-operatives. Nevertheless, the demise o f fimdholding has not fundamentally altered the nature o f the relationship between doctors and nurses, as the findings will demonstrate In GP practices that were fundholders, GPs controlled their own budgets to cover the cost o f running the practice and buying drugs and some non-emergency hospital services (Baggott, 1994). During its existence, the fimdholding scheme was calculated 71 according to a number o f criteria, including the number o f patients on the practice list/ One o f the principles underlying fimdholding was that GPs would compete for patients in order to generate revenue. Those practices that used their budgets most effectively would attract patients and expand their services (Baggott, 1994), thereby generating funds that could be reinjected into the practice for expansion. Fundholders were able to specify within their budgets the volume o f community services they required and purchase the nursing services that met the needs o f their practice (Walsh & Gough, 1997). In purchasing nursing services, some GP fundholders appeared to regard the nurses themselves as a practice resource over which they had control. A health visitor conveyed this perception in stating, “fimdholding practices don’t want their nurses, their [italics added] nurses doing things that are related to patients not on their list." According to A. Laing (personal communication, March 1999), some GPs apparently thought they were “buying nurses, not just nursing services, and saw the Trust as merely a labour agency”, thus the effect for nurses was not merely one o f attachment to the practice, but one o f management by it. The notion o f management also extended to nurses in non-fimdholding practices. A health visitor who had recently moved from a non-fimdholding practice said; I found you would get things not related to our work, because they couldn’t give it to a fimdholding practice.. their money is allocated for health visitor time, so we got extra, public health duties given to us. The fundholders were paid only for so many hours o f nursing time, and thus, according to another health visitor, “they’re quite - you’re not going off to do that because that’s not 'Patients register with a GP practice, which constitutes the practice list. 72 our [italics added] patients.” Fundholders were seen to be exerting an even tighter degree o f control on health visitors’ work than non-fundholders Some nurses expressed concerns that the focus on money in health care affected not only nurses but also clients. A perception expressed was that by one nurse was that “the patient is looked at different in terms o f what they might cost.” For example, one nurse said that some fimdholding practices were reluctant to pay for expensive drugs or procedures that would diminish the practice budget. There was also an expressed view by nurses and others that some patients received specialized services before the patients fi’om the non-fimdholding practices. The concerns expressed about clients and the provision o f services raises questions about the position o f clients themselves in the hierarchy o f health care. These questions are not the primary subject o f this study. However, the issue of hierarchies leads to the issue o f power in relation to role conflict. Power Power has many dimensions including hierarchy, status, and autonomy. Power, as a dynamic in administration and leadership settings is about the ability to exert control and influence (Hugman, 1991). Pieranunzi (1997) suggests that power is a concept that remains ambiguous and controversial, but is nevertheless present in all relationships and influences their course and outcome. Doctors have demonstrated power in the NHS since its inception. One o f the foundations o f the National Health Service in Britain was the dominant medical view that the causes o f ill health could be found fi'om the scientific study o f disease, and at least partially as a result, the acute services received priority funding (Neave, 1994). Both this 73 medical-centred approach and structure in the NHS have helped to maintain the power of the medical profession.^ The power of the medical profession may be demonstrated in both overt and covert ways. A notion o f power is embedded in one health visitor’s description o f her role and work: When you are actually going through the training we are taught to look at everybody’s health and concentrate on cradle to grave but when you actually come out in practice, maybe because o f the way policies are delivered or whatever and GPs or fundholding, our work with children really domineers. The construction o f health and social policies is a demonstration of power and expresses the interests o f dominant groups, such as doctors, working through government. Within the policy arena, the operation o f power is the process by which the interests o f one group are recognized and acted upon over the interests o f another (Gough, 1994a, p. 68). Thus, even when policies are not intended for nurses, they can impact on nurses’ roles and nurses’ work. For example, work with children has always been an important feature o f the health visitor’s role. Contact with families begins in the antenatal period or with one statutory visit to every family with a new baby (Cody, 1999). Health visitors assess infants and children for the early detection and prevention o f problems in growth and development. They provide advice and support to parents, make referrals when specialized assessments or services are required, and work closely with social services to plan interventions for children at risk for abuse or neglect. Currently, all children under ^ This medical-centred approach to health services is also reflected in poUcies related to community care, which will be discussed later. 74 the age o f five and their families receive at least one visit for the purposes o f health promotion and preventive care (Cowley, 1995). But increasingly, health visitors are taking on work with children that is shaped by the priorities o f the GP practice to which they are attached A health visitor explained how work with children taken on by GPs becomes part o f nursing work “GPs get a fee for every immunization they carry out,” she stated. “Now most health visitors are carrying out immunizations.”^ This passing on o f work relates to the practice o f delegation, defined as the referral o f a set o f tasks fi’om one professional group to another (Ross & Mackenzie, 1996). A nurse manager stated that the delegation is primarily in areas o f financial incentives for GPs. This statement requires some explanation o f the contract the GPs hold with the NHS. Since April 1993, the contract for physicians has included a community element fiom which GPs, or health boards in the case o f non-fimdholders, must purchase a range o f community health services (Laing & Cotton, 1995). Depending on their practice population and the nature o f their practice priorities, GPs may elect to receive special fees for discretionary services such as screening which emphasize work with children or the elderly. The contract also includes financial incentives for some aspects o f community care for children such as immunizations (Ross & Mackenzie, 1996). In this way, the delegation o f tasks fiom doctors to nurses is itself a demonstration o f professional power / ^In contrast to communia nurses in Canada, nurses and health visitors in the communia in Scotland have only recently begun to administer immunizations The same may be said of nurses who may delegate nursing tasks, for example, to nurse assistants. 75 Although work with children is an activity consistent with the health visitor role, increasingly the nature and frequency o f this work is linked with GP practice priorities. Similarly, health visitors described an increasing emphasis on their role in health promotion as one that is linked to priorities o f the GP practice. As one health visitor observed: There are a lot o f changes in the last couple o f years in government policies, as well there is a bigger slant toward health promotion and the GPs are getting encouragement, yes encouragement shall we say, financial and otherwise, to take on these health promotion activities which they then pass on the health visitors and assistants. Changes that health visitors have observed in their w ork include more group-oriented activities such as coronary health clinics, a decline in home visits, and as one nurse said, “more one-off things” like health promotion clinics and fairs with children Activities the nurses described as health promotion may actually encompass one or more o f three role functions: health education, health promotion and public health (Ross & Mackenzie, 1996). Health education is planned individual intervention aimed mainly at affecting the voluntary actions o f individuals (Ross & Mackenzie, 1996). The health visitor’s educative work with children and families is among the health education initiatives. Health promotion encompasses health education and is aimed at social and political action and change that provides opportunities for improving health status among individuals or groups (Ross & Mackenzie, 1996). Public health tends to be focused on disease prevention, primarily at a population level. It is likely that the health visitors’ increased focus on health promotion will actually be directed to secondary prevention such as screening for the early detection o f disease. This initiative is more in keeping with the priorities o f general practice (McClymont et al., 1991). 76 The shift described by health visitors to more group and population-based health is consistent with WHO directives discussed earlier. It is also consistent with the policy paper. Working together for a healthier Scotland f1998b\ which describes an opportunity for nurses, particularly health visitors, to develop the public health and health promotion role through assessment, planning, and teaching with groups o f people (Hoskins, 1998). Despite some consistencies with policies, health visitors perceive that it is the priorities of the GP practice that are taking precedence in determining the nature o f their work. A health visitor gave an impression o f the health visitor role within the GP practice stating, “We are becoming more prioritized.” While nurses are expected to follow the practice priorities, they are also facing restrictions to meeting their own, although not all health visitors in the study identified this as a concern. One health visitor expressed the view that taking on the work from GPs is actually better practice. “GPs have more time for clinical work,” she said. This apparent accommodation to the role of doctors may reflect a preferential valuing o f doctors' work, sometimes subscribed to by nurses. Witz (1994) suggests nurses often describe their own value either in terms o f their proximity to or distance from doctors. In other words, the extent to which nurses can assist doctors may either enhance or diminish the perceived value o f nurses’ work. The community care reforms and other policies surrounding the organisation and financing o f health care have continued to perpetuate the structures and practices that favor and reward the interests o f doctors. As Ham (1992) states; Medical dominance does not imply a conspiracy against subordinate groups, but rather it reflects the power o f doctors, their control o f key resources such as 77 expertise and knowledge, and their ability to achieve acceptance o f their own concept o f health, (p. 229) The struggle for autonomy emerged as a concern for some nurse participants, and these concerns arise in the next sub-theme The Struggle for Autonomy: Handmaiden versus Professional Autonomy is often linked with power and the ability to control one’s work. Autonomous work is the discretion about the type o f work people do and the balance o f time spent on different activities (Ovretveit, 1993). The struggle for professional status in nursing is often characterized as a struggle for autonomy and power. Health visitors and other nurses expressed concern, however, not only for their work, but also for families and children. They also expressed contrasting views on the extent to which their relationship within the GP practice was impacting negatively on their ability to determine the nature and content of their work. In the view of one health visitor, the organisational arrangements surrounding community care are strengthening traditional power relations between doctors and nurses, and diminishing the ability o f nurses to direct the nature of their work; With respect to doctors, I have seen more o f a back to the handmaiden attitude than ever since community care came in.. Doctors don’t realize how much work health visitors and nurses do. So many doctors want to see nurses in a subordinate role. Within an historical and cultural context, female nurses have taken a subordinate, non­ professional role in the male-dominated medical division o f labour (Witz, 1994), a difference that persists to the present day Sex divisions and gender divisions of labour continue to fall along similar lines. Miles’ (1991) analysis o f the division o f labour for males and females in the NHS in Britain reveals that seventy-five per cent of the workers 78 are women, but their distribution in the hierarchy is very uneven Approximately twenty per cent o f doctors are women as against more than ninety per cent o f the nurses Three quarters o f the semi-skilled and unskilled manual workers in the health labour force are women, most o f them employed part-time (Miles, 1991). Gender divisions also reflect the distribution and exercise of power, and the differential valuing or devaluing o f work. Nurses’ work is caring work, typically seen as women’s work. Some perceive it as a low status activity that is based on innate skills, and does not require professional education (Gough, 1997). The role o f the nurse as handmaiden, described by the health visitor, is consistent with evidence cited by Itzin (1995a) Itzin states that in both the public and the private spheres there is a hierarchy o f value and power in all relations between women and men that is gendered; the work men do is accorded greater value than the work women do (p. 261). Gender provides a way o f conceptualizing roles and work, and both doctors and nurses have been socialized to these views. The role o f handmaiden is, however, one to which nurses themselves may be inadvertently contributing. Nursing has always struggled with its identity, its status as a profession. Topics such as nursing’s discrete body o f knowledge and theory and nursing’s scope o f autonomous practice, elements which mark professional status, are frequently debated in nursing literature. Chaska (1990) states that by not agreeing on phenomena such as the knowledge and theory that are o f unique concern to nursing, the discipline is vulnerable to adopting knowledge from other disciplines. Many nurses believe that the answer to advancing nursing is learning more about, and practicing, components o f medicine. 79 Two o f the participants who held specialist roles expressed a preference for taking on components o f medicine that may be delegated by doctors to nurses. They described developments in Scotland that may allow nurses to perform minor surgeries and to prescribe certain medications, which to some degree, may increase nurse autonomy. One specialist nurse spoke of the interest some nurses have in learning an endoscopic procedure for the insertion o f a type o f gastrostomy tube. This training provides nurses with an opportunity to extend their role particularly through the acquisition o f medical skills. In the current debate in Britain about the Aiture o f nursing, some nurses are advocating an extension o f the nurse’s role, one which enlarges the role by incorporating medically derived tasks, devolved to nurses by doctors (Witz, 1994, p. 31). Many nurses welcome the opportunity to take on work that previously was confined to medical practice. As one nurse participant said, “It makes the work more interesting.” Some nurses may see this work as a way o f enhancing their role and status as a profession. For some nurses, socialized to expect medical dominance, role extension may not be perceived as confiictual. For example, one health visitor, observing that the reforms had led to changes in the degree o f nurse autonomy, stated, “We didn’t have the same contact with the GP practice [in the past] that we have now I suppose we were more autonomous at that time. But I much prefer the way it is now ” In a later interview she said that it’s up to the individual if they are autonomous. “I didn’t start a smoking clinic even though the doctors wanted it,” she said. In this view, autonomous practice is a matter o f personal choice or preference, or it may also point to the role of resistance in response to medical power. 80 In contrast to the health visitor’s stated preference, autonomous practice was an important consideration for three of the four nurses in my research who expressed satisfaction with their roles. These nurses were not attached to GP practices and had relatively independent specialist roles in the community. They also saw themselves as able to contribute meaningfully to a team that included doctors and other professionals. The notion o f autonomous practice is consistent with the concept o f an expanded role, one that provides an opportunity for nurses to develop nursing knowledge and theory by building on the strengths and value o f nurses’ traditional concerns for clients. This building on nursing knowledge and theory assists nurses to understand and re-define their roles in relation to clients rather than in relation or reaction to medical colleagues. Consistent with the UKCC Scope o f Professional Practice (1992) document, the expanded role also enables nurses to consolidate their autonomous scope o f practice (Kedfem, 1997). In contrast to the perception among most o f the health visitors that the organisation of care was constraining their ability to direct their own practice, the role o f school nurses is moving toward an expanded role and greater autonomy. According to one participant, the school nurse “is now a professional doing her own work. She refers to the doctor only as necessary.” 1 did not have an opportunity to interview school nurses directly, however, the participant 1 spoke with described significant role change among school nurses in response to government policy, and said that recent government policy concerning health care in schools has changed the emphasis in school health and promoted an expansion of the nurse’s role. In the past, the participant stated, every child in school received a medical exam, but following the guidelines o f the new program, the nurse now 81 makes an assessment and decides whether or not to refer the child for medical review or other services. This opportunity to have greater control over decisions surrounding the care o f the children has helped to empower the nurses. One nurse who had previously worked as school nurse, said that the schools nurses still have a long way to go in becoming autonomous. However, the participant who described significant role change, also provided a striking observation o f the impacts o f the change: It has made a tremendous difference in their attitude. Others see the change in the nurses. They have something they can say they are doing which is their professional responsibility. It brings out their skills, gives them an ability and desire to seek more skills. They want to learn more now. Before there was no place for them to go...I see the change going fi’om handmaiden to professional in their own right. This observation underlines the relationship between autonomy and job satisfaction, one that is confirmed by a UK study (Spurgeon, 1997) assessing professionals’ views o f their own roles. The study found that where empowerment offered real autonomy and control over the content of their work, there were much higher perceived levels o f satisfaction and effectiveness. These findings are consistent with those o f Pieranunzi (1997), whose research with nurses revealed power and empowerment to be transformative, contributing to the “richness of lived experience” (p. 162). UK studies o f doctors and nurses have reported that conflicts arose fiom the unequal balance o f power between doctors and nurses, as nurses struggled to reconcile their subordinate image with the development of professional autonomy (Cowley, 1995). The discussion o f autonomy has focused largely on the scope o f practice, and the implications for nurses and health visitors’ roles. But what are implications for clients, in 82 this study, children and families? In follow-up interviews I conducted with participants in June 1999, health visitors confirmed that practice priorities are controlling the nature and content o f health visitors’ work One specialist nurse stated that things were “getting worse” than they were when I was in Scotland eighteen months prior The nurse said: Health visitors are not able to do the nitty gritty o f health visitor work such as breast feeding follow up The GPs won’t allow it. They are paid according to the number o f people who go to the clinic, so they want health visitors to do the well man and well women clinics. Mums are coming in with babies that have problems. Health visitors used to visit weekly for at least six weeks. Now they might visit twice. In the words o f one manager, the “real work” o f health visitors is not being done, and the direct contact work with families has been pushed aside. Other work, such as the preschool health checks by health visitors is also gone, the manager said. The concerns expressed by some o f the nurses throughout this discussion reflect distress, not only with their changing roles, but also with the impact that the changes are having on the health o f children and families. The role conflicts stimulated by the reforms are perhaps only now emerging as health visitors and other nurses in the community begin to identify changes These changes concern the conflict between nurses’ own expectations for the provision o f comprehensive preventive care to children and families, and those expressed through the organisation o f the NHS and GP practice. At the time o f the foUow-up interviews, the purchasing role o f GP fundholders and health boards in Scotland was being replaced by that o f local health care co-operatives under the guiding Scottish policy document Designed to Care (1997). The intention is that the groups, consisting o f GPs, nurses and other professionals, will work with health 83 boards, NHS Trusts, local authorities and community groups to develop health improvement programs (Payne, 1997). Some nurses expressed the view that the establishment o f LHCC to replace GP fundholding could make a positive contribution to redefining health care priorities and greater opportunity for nurses to influence care. For example, several health visitors said that the local health care co-operatives had selected priorities that influenced their role, but they had input into those priorities. The priorities included coronary rehabilitation, teen health, and computer technology. A health visitor stated, “The other things will carry on that have been part o f the role.” Some nurses and other participants said, however, that it was too early to determine what, if any impact, the LHCC would have on the nature o f work for nurses in the GP practice, or what voice they would actually have in the arrangement In essence, the structure of health care organisations provides a fi’amework for the influence and power o f medicine. The nature o f financing GP contracts gives GPs the opportunity to make key decisions about nursing services and in what ways they will utilize nurses’ roles, a view confirmed by Witz (1994). Through special incentives for physicians in primary health care, government policies have impacted, intentionally or unintentionally, on the ways in which nurses organise, prioritize, and deliver nursing care. Role conflict suggests another, underlying theme, that o f value. It raises questions concerning the value o f nurses’ roles and nurses’ work. If nurses’ roles in their work with children and families are valued, why are they constantly subject to external forces promoting their change? And what about families? In what ways does change affect them, and reflect how they are valued? I explore these questions in the next chapter. 84 In this chapter’s next and final theme, the discussion shifts fi’om conflict to confusion, as I explore relationships between policy and roles at the interface o f two organisations, the National Health Service and Social Services departments under local authorities. Role Confusion “Health for this. Social Services for that, but it isn’t very clear.” Introduction The roles o f nurses in the community are situated primarily within the organisational structure o f the National Health Service. In delivering nursing services, nurses work not only with GPs in the context o f the GP practice, but also with social workers within Social Services departments, where they are involved in the provision o f community care. As demonstrated in the preceding theme, the way in which roles are organised and policies are implemented helps to shape the nature o f work and the interactions between the groups involved. Role confusion emerged as a major theme in my discussion with nurses and other research participants fi'om Health, Social Services, and the voluntary sector in Scotland. The participants characterized the confiision as arising in the context o f what many termed a “Health and Social Services divide ”, which they said is creating barriers to the effective delivery o f community care services in Scotland. I have used the term role confusion to describe a lack of clarity in the role boundaries between nurses and social workers, as well as between the roles of their employer organisations, the NHS and local authorities. Each organisation respectively, is responsible primarily for the health or social care components of community care. 85 Community care, described primarily as social care, was not actually intended for children (DOH, 1989b), the client group, who along with their families, are the focus o f this research. However my research demonstrates that, although the community care legislation was not intended for children, it is having an impact on the care o f children and their families. This finding is consistent with the policy statement outlined in Caring for People (DOH, 1989b): There is no intention o f creating a division between childcare and community care services; the full range o f social services authority functions should continue to form a coherent whole, (p. 3) Although the community care reforms have given Health and Social Services new directions, the divide itself has a lengthy history. Before turning to the discussion o f role confusion, it would be usefiil, therefore, to discuss the historical and legislative context for community care. Context to the Theme o f Role Confusion Community care in Scotland and the rest o f the UK derives firom policies that have spanned several decades, and concern the roles and responsibilities o f the NHS and Social Services departments under local authorities. Historically, there has been a division between Health and Social Services that is rooted in the differences between the organisations and the professionals working within them (Pietroni, 1994). Social Services departments are situated outside the management structure o f the NHS, thus not only have the professionals in each organisation been separated, but each has different lines o f management and accountability (Pietroni, 1994). These structural arrangements have posed obstacles to achieving the goals set by the government for collaborative or joint working between the two organisations. 86 In the past decade the government o f the UK introduced the community care reforms, which provided new directions for community care Subsequently, all areas o f activity in both the NHS and Social Services have been completely re-organised (Pietroni, 1994). The Act also delegated to Social Services departments the lead responsibility for planning and delivering community care. Organisational changes in both the NHS and Social Services have also promoted changes in the roles o f nurses and social workers. Social workers have taken on new roles as purchasers and care managers as distinct from their previous role as care providers. Nurses in the community, as discussed in the previous theme, are taking on priorities associated with the GP practice to which they are attached, as well as carrying responsibilities in line with their employer Trust. They are also taking on the health care services needed to help maintain in their homes children and adults with health needs who would have otherwise resided in hospitals or institutions. Within this environment o f change, those working in Health and Social Services have a mandate to collaborate. Government directives have attempted to overcome the historical Health and Social Services divide by defining more clearly the respective responsibilities o f the NHS and Social Services departments. As I indicated, the theme o f role confijsion emerged fi*om interviews that described the lack o f clarity in role expectations or in role boundaries experienced by community nurses and other participants. Although participants spoke to some extent about the negative impacts o f role confusion on families, their primary focus was the nature of confusion and its effects on professional roles and organisational relationships. My analysis o f research interviews and policy statements also revealed factors that contribute 87 to role confusion and serve as real or potential barriers to joint working. I will now discuss the theme o f role confusion through three sub-themes: policy, the professionals, and the organisations. Policy: C o n c e p tu a liz in g Health and Social Care The community care reforms outlined central government’s policy and direction for the provision of community care. Caring for People explicitly stated that the distinction between health and social care governs the funding o f health and social service authorities, and that there may be areas where the distinction between health and social care is blurred (DOH, 1989b, p. SO). One o f the stated purposes o f the document was, therefore, “to clarify roles and responsibilities” (p. 4). One participant from an agency in the voluntary sector reflected, however, on the failure o f policy to give explicit direction to Health and Social Services organisations for the provision of community care: It’s been a problem since the NHS and Community Care Act 1990. Things have been divided up. Health is responsible for this. Social Services for that, but it isn’t very clear. Before the Act, I think people just took on more generic tasks. The Act has forced people to think about what they are providing and what it costs. The relationship between policy definitions o f health and social care, and the costs o f care are central to organisational and role confusion. Health care in Britain can be freely accessed, whereas social care is means-tested to determine cost to the service user. Government policy documents associated with the Act attempted to clarify respective roles and responsibilities for community care by drawing a distinction between health and social care. In other words, the Act forced people to think about whether they are 88 providing health or social care because each must be viewed differently in terms o f cost. Yet the distinctions between the two are conceptually flawed, as I will explain. Caring for People defines health care as services provided under medical and/or nursing supervision that remain the responsibility o f the NHS ^ c K a y & Patrick, 1995). Social care is assistance with daily living, home adaptations, budgeting, housing, respite, employment and education (DOH, 1989b, p. 10). Social Services departments under local authorities are responsible for planning these services. But community care is also defined as social care - the care provided for people to remain living independently in their own homes or with assistance in residential settings (Ross & Mackenzie, 1996). Caring for People states that community care is about health as well as the social needs o f the population, and says that Health and local authorities would need to work closely, especially in areas in which “it may well be difficult to draw a clear distinction between the needs o f an indi\idual for health and social care” (DOH, 1989b, p. 33). Herein lies a key source o f confusion. Community care, the services people require to help them maintain well-being and independence in their own homes and communities, involves both health and social care. Furthermore, the definitions o f social care and community care fail to acknowledge all the health care that goes on in people’s homes and all the caring work by families. Thus the definitions provided in policy perpetuate a division in the delivery o f community care services by failing to provide a conceptual framework that addresses the relationship between health and social care. Health visitors explored an aspect o f this relationship in a discussion about their role with children and families; 89 HV 1; It’s crisis intervention. You really can’t deal with the health issues because there are so many social problems, financial problems, just deprivation. You can’t really focus on health issues HV 2: That depends if you want to separate health fi’om social issues. HV 3 : 1 don’t think you can separate them. I find it much easier in a placement area like this [not deprived] to set up a plan and say these are the health promotion issues for this family that I want to set up at this age and that, and you can do that much more readily [here] You might go in to a family and they don’t have any money and electricity is cut ofi^ so discussing home safety and healthy diet becomes a fairly low priority. Your wondering how you are going to get the children warm is a much bigger priority so it is quite different [in a deprived area]. This discussion demonstrates one o f the relationships between health and social care; the negative effects o f unemployment and deprivation on nutrition, safety, warmth and well being. The health visitor’s assessment and plan o f care are guided by recognition o f this relationship. In this example, the health visitor recognized that the social care needs related to deprivation, such as food and shelter, took precedence over her immediate goals to promote good nutrition and safety. In essence, she described the critical role o f social determinants in health, and thus she revised her plans and priorities for the family. This perspective on planning underlines the need for a conceptualization o f community care at the policy level that is consistent with good practice and reflects the inter-relatedness o f health and social care The community care policies generally do not reflect this inter relatedness By defining health care as services provided under medical and nursing supervision (DOH, 1989b), they reflect a bio-medical approach, one that tends to view health as the absence o f disease and health care predominantly in terms o f treatment and cure. This view medicalizes health, and fails to address the social determinants o f health such as poverty, unemployment and education. Yet successive studies in the UK have demonstrated 90 relationships between ill health and the cycle o f deprivation, for example, the way in which chronic illness and accidents in children increase in relation to the family’s poverty (Allsop, 1984). The failure to provide a conceptual bridge in policy between health and social care ultimately leaves professionals struggling to gain clarity about their respective roles and responsibilities. Hugman (1991) affirms this view o f the lack o f clarity between health and social care, and the ambiguity it creates for nurses and social workers. He states that the boundaries between the caring professions are constructed around concepts o f health and social problems, but that when clarity between these is lacking, as it often is, there is an impact on professional relationships (p. 101). The Professionals In this sub-theme, I discuss the work and professional culture o f nurses and social workers, and the ways these contribute to role confusion. In Scotland, social workers who are called care managers, take the lead responsibility for assessing clients’ needs for such things as respite care, aids and equipment. Nurses in the community, along with GPs and other primary health care workers, are responsible for the health component o f community care. One nurse who works with children described her concern about the role o f Social Work in planning community care services: If care can be done by carers, it’s social work. If we need a nurse, it’s health budget. With the Care in the Community Act, the Social W ork department will get a cut o f health money. Social Work has more money, but they don’t always understand the needs. 91 In taking the lead for assessment and planning, social workers must determine whether the client need is for health or social care. But they are only responsible for assessing people “whose needs extend beyond health care to include social care...” (DOH, 1989b, p. 18). If they perceive that there are health needs, there is an expectation that they will involve doctors and/or nurses in the assessment process (DOH, 1989b). Yet the requirement for health or social care cannot be determined by who performs the task. Tasks change and are often more complex than originally anticipated. Different professional groups also share tasks or components o f tasks. These situations create role confusion often associated with role overlap, or a blurring o f role boundaries. There is a lack o f clarity about who does what, and who takes responsibility. This lack o f clarity is heightened by situations in which one profession questions whether others have the skills and knowledge to do the work (Ovretveit, 1993). The work. Nurses and social workers are educated for different kinds o f work, differences that have historical roots. Early social work in Britain provided care to the respectable working classes, whereas nurses were found with the poor and working classes (Hugman, 1991). Although these distinctions have altered in modem day, nurses and social workers often misunderstand and even mistrust the nature and content o f one another’s work. One participant in the voluntary sector who works with both Health and Social Services expressed her concern about the provision o f services by workers from both sectors; It isn’t clear what is considered social or health, and if both are doing holistic assessments it’s very unclear. There are huge gaps and a need for more joint training. 92 The delivery o f nursing and social care services flows from the assessment. But social workers and nurses may differ in their approach to the assessment process itself. The Royal College o f Nursing in the UK defines assessment as the process o f collecting information about the individual and from that information making decisions about their health status and the best way o f working towards improving or maintaining health (Hope, 1995). Assessment is a process, not a one-off activity, and it should be comprehensive, dealing holistically with the individual (Hope, 1995). The concept o f a holistic assessment is one familiar to nurses and health visitors Health visitors and other nurses, whose traditional area o f practice is in the community, conduct assessments based on an integrated approach, one which assumes that people are biological, psychological, social and spiritual beings who live in equally complex environments (McClymont et al., 1991). Nursing assessments may also be defined by the dominant demands o f the role; district nurses, for example, may concentrate more on physical needs, while health visitors may tend to focus on the developmental needs o f the child and family (Ross & Mackenzie, 1996). In contrast to health visitors and other nurses, the role o f social workers as care managers is no longer one of direct involvement in service provision in Scotland. Their assessment is supposed to be led by the assessment o f needs o f individuals rather than by the services available (Henwood, Wistow, & Robinson, 1996), however, they also may be constrained by the expectation that they provide services within the available resources (DOH, 1989b). 93 A health visitor challenged the notion that community care is led by the assessment o f needs. She stated, “It’s not needs led, it’s money led ” Ross and Mackenzie (1996) support this view in afiSrming that the introduction o f care management into community care is based on value for money considerations (Ross & Mackenzie, 1996). The concept o f value for money reflects a utilitarian approach that often underlies the need for rationing o f resources (Elliot, 1995). In contrast, nurses’ work is often guided by a rights-based ethic (Elliot, 1995), one that emphasizes the individual’s right to services. Thus a key issue in service delivery is how money is allocated following assessment. Regardless o f whether or not both social workers and nurses conduct holistic assessments, there may be diSerent considerations in the way that decisions for services are managed. Social workers are expected to assess people whose needs extend beyond health care to include social care QX)H, 1989b), and thereby determine a service response. But what do these distinctions mean for families? For example, incontinence is a common problem related to age and/or disability. But “social workers used to think incontinence wasn’t a health issue,” said a nurse who works with disabled children, “and some social workers have been telling district nurses what a patient does or doesn’t need in terms o f care.” From a social care perspective, incontinence is viewed as an activity o f daily living, one that may require non-nursing help to assist the family in maintaining an individual’s care at home. In contrast, many nurses view incontinence as a source of mental, physical and social distress. It can also be a sign o f a more severe and underlying medical condition that must be investigated. Furthermore, whether or not it is preventable in a particular client, there are nursing strategies required and available to minimize its impacts on the 94 individual’s skin integrity, activity, selfesteem, and opportunities for socialization. There may also be significant cost factors in managing incontinence that need to be addressed. While nurses themselves may not be required for daily care, their role in assessing and planning care may be vital to ensuring that these issues are addressed. The issue o f what constitutes a health or social need must thus be considered within the broader question o f what constitutes need. The concept o f need is usually linked with service provision (Ovretveit, 1993). Different perspectives, however, between nurses and social workers on client needs, work, and service provision may be heightened by mistrust and differences between the professions themselves. Roles and professional cultures Each profession has an occupational culture characterized by different philosophies, values and assumptions. Each profession differs in a number of other factors; (a) its sense of mission, aim and tasks, (b) its focus and orientation, (c) its ideological base and its technology, (d) its status and prestige, and (e) its orientation to chents, patients and other professionals (Pietroni, 1994). Research among health and social care students supports the view that, not only are students not trained for interprofessional collaboration, but they also may be receiving training that educates against it (Pietroni, 1994). Some o f these differences between nurses and social workers appear to be further intensified by the changes that have occurred following the reforms, as I will demonstrate later in this discussion. One o f the ways o f reducing the barriers between professions is for each professional group to understand their differences. A participant from a charitable agency described a need for joint training and stated, “There need to be joint assessments. Maybe 95 people need to go out together.” An effective but often unrecognized method o f learning about one another’s work consists o f professionals working together. Joint assessments, in particular, reveal the extent to which health and social needs and services overlap. Clients rarely have health care only or social care needs only, and it is unlikely that any one profession can meet them all (Cutler, 1998). Working together facilitates clarity surrounding respective roles. In the example provided earlier where social workers stated that incontinence was not a health issue, joint assessments could expand the views o f both nurses and social workers. Nurses contribute their understanding o f the role o f preventive health care and education in dealing with incontinence, which are much broader issues than the task o f cleaning and bathing someone who is incontinent. Social workers contribute to an understanding o f their budget constraints in choosing care providers, and o f the policies and practices that guide decision-making. Both may contribute their understanding o f family systems and o f the impact o f disability and illness on families. Joint assessments and planning also enable the nurse or social worker to determine who is best suited to take responsibility for care management with a specific client. Joint assessments thus facilitate joint planning and help to identify the contributions each profession can make. One health visitor in a specialist role who regularly conducts joint assessments with a social worker reflected on their value, and stated, “We leam fi'om each other...Part o f the nurse’s role is to be an advocate. Social workers are equally interested in helping clients:” The role o f advocate, one shared by both nurses and social workers, recognizes the primacy of the client’s needs. This shared recognition helps to reduce rivalry and the 96 struggle for power (Ross & Mackenzie, 1996) that often occurs between professional groups. However, Hugman (1991) points out that it may not be professional differences but role similarities which are leading to confusion and struggle between nursing, social work, and other remedial therapies. The growth o f the community as the location o f professional intervention has emphasized the extent to which the caring professions lay claim to similar skills and practices (Hugman, 1991, p. 102) for similar groups o f clients, and are thus engaged in a struggle for professional power. This struggle may be exacerbated by struggles between the respective organisations. The Organisations An organisation is commonly thought o f as a collection o f workers with varying roles designed to achieve explicit goals in the output o f goods or services (Tyson & Jackson, 1992). Others see it as a form of negotiated order in which groups and individuals contest for positions o f power while also influenced by wider social, economic and political forces (Williams, Cooke, & May, 1998, p. 93). Thus, although this discussion involves two specific organisations, the NHS and Social Services, it also concerns the nature o f organisations themselves. Inter-professional collaboration is shaped or impeded not only by professional groups but also by the employer organisations. The nature o f organisations is explored in relationship to three factors: organisational culture, responsibility, and change. Organisational culture. Organisations, like professions, have their own culture and power structure. Organisational culture is part o f the taken-for-granted, everyday reality that is difficult to 97 see, and refers to the shared symbols, language, practices, and deeply embedded beliefs and values (Newman, 1995). The NHS and Social Services, as discussed earlier, constitute two distinct and different organisational cultures. A participant who conducts research in the voluntary sector described one aspect o f their cultural differences; If community care is going to come in, we need to work together...Local authorities don’t want to meet with health board appointees; Social Work tends to work with the Trust. This statement refers to the fact that local authorities are elected ofGcials while health board members are appointed. This seemingly minor difference illustrates an important consideration between organisations: the way in which agencies are organised affects their relationships with one another, their perceptions o f power and status, and their preferred ways o f doing business. These ways o f doing things are an aspect o f organisational culture, where those in positions of leadership and power have much influence on what is and is not done and how things are done (French, 1995). Organisational arrangements may themselves serve as barriers to joint working. One health visitor provided her view of the new way o f doing business since the introduction o f the community care reforms: It’s been too focused on management, bringing in management consultants. They tried to make it [community care] a business, run things with accountants. Money rules their brains. They wanted competition, now they want cooperation. The reason people’s responsibilities have changed is money Traditionally, both the NHS and Social Services operated as bureaucracies or as bureau-professional regimes involving different but relatively stable balances o f power (Newman & Clarke, 1994). However, the 1990 Act and community care reforms changed 98 the model o f organisation within and between health and social services to one associated with business and the market (Ovretveit, 1993) and introduced new relationships. Consistent with the notion o f an internal market, the legislation shifted the provider function formerly held by social workers to new players - providers largely in the voluntary and private sector who would compete to deliver the best value for money This value for money theme was consistent with the management culture, introduced in the 1980s in Britain, which posited that the manager, compared to the professional or bureaucrat, is driven by the search for efficiency rather than professional standards or bureaucratic rules (Newman & Clarke, 1994). Transfers to the private sector became justified not only in terms o f increasing competition and efficiency but also in terms of greater consumer choice and control (Neave, 1994). These changes have increased the complexity o f relationships and inter-organisational work. However, policy rhetoric has now shifted fi’om the need for competition to the need for cooperation between the different sectors. The plan is for agencies to coordinate the different types o f services in order that a population or person gets the services they need without gaps or duplication (Scottish Office, 1997). In the second set o f interviews I conducted in June 1999, there were indications that organisational differences are continuing to impede cooperation between nurses and social workers. The impact o f organisations on workers’ efforts to collaborate is confirmed by Ovretveit (1993), who says that the type o f cooperation between organisations influences how practitioners work together in the community. A nurse said that there is a will between workers at the ground level to collaborate, but another participant added, “funding is a big issue.” 99 Responsibility: who pavs? The focus on resources seemed to many participants to serve as an underpinning for poor cooperation, role and organisational confusion, and negative impacts on services. A participant from an agency in the volunteer sector explained, "People cared for and carers are caught in a resource fight about who pays.” Participants from all sectors expressed their concerns about the negative impacts o f the Health and Social Services divide on families. For example, nurse participants reported difficulty in obtaining pieces o f equipment for children with special needs because o f a lack o f clarity about whether the equipment was classified as health or social care. Based on the guidance (DOH, 1989b), home adaptations, equipment or aids that promote independence constitute social care, and their funding is considered to be the responsibility o f Social Services. According to one nurse participant, either Health-employed nurses and occupational therapists (OTs) or Social Services employed OTs may be involved in assessing for aids or equipment. Thus, while the assessment may come from one department, the responsibility for funding may be shifted to another, depending on whether the need is seen as a social, health, or even an education type of requirement. The ensuing debates leave those who have assessed the need struggling in their efforts to meet it, and families caught in the middle. An administrator, who described a concern related to the provision o f respite care for children and their families, provided another example that illustrates a lack of role/organisational clarity. Respite care, like aids and equipment, is considered social care because it assists the family to maintain the child or cared-for person at home. The concern requires a brief history: Respite services refer to temporary relief for a carer from 100 their caregiving role. The community care legislation does not address the provision o f community care services such as respite to children under 16, but local authorities nevertheless have obligations to children with or affected by disability These provisions are expressed in The Children (Scotland! Act 1995. and require local authorities to provide services that minimize the effect o f the disability on the child or his/her family (Watson, 1996). This definition includes the provision o f respite, defined by Caring for People (1989b) as social care. The administrator participant explained the concern Social Services will sometimes fiind carers to provide respite for children and their families. On occasion, nurses employed through the NHS may also be involved in the provision o f respite for children and their families. But according to the definition in Caring for People (1989b), services provided by a nurse are health services. Yet neither Health nor Social Services have funding dedicated for children's respite, which has to be found firom whatever pot o f money the agency involved in the provision o f respite has. A participant fi’om the voluntary sector described the need for respite as one o f the most pressing concerns for families who have children with special needs. This example illustrates that the divide is really a gap filled with needs and services for which neither organisation may necessarily assume fiscal responsibility. One participant fi’om the voluntary sector described the struggle for resources in terms o f the devolution o f power She stated, “In terms o f people fighting about who pays for what; budgets have been devolved and people are caught in a resource fight; there are less resources for services.” 101 In implementing the community care reforms, the central government in Britain devolved budgets to regional health boards and local authorities, ostensibly to give communities greater control over their own needs and resources (Gough, 1994a). Critics view this shift from centralized to regionalized control primarily as one o f shifting responsibility - “passing the buck” to a lower level o f authority (G. Weller, personal communication, October 21, 1998). There is no clear evidence, however, that regionalization has been accompanied by a greater share o f the resources (Davis, 1993). Funding constraints are affecting the provision o f community care services for both regional Health boards and local authorities. A health visitor said, “Community care has decreased the amount of resources. It’s a fish net, full o f holes.” This image is consistent with the gaps in service provision and staff shortages also described by participants. Community care was intended to provide a cheaper alternative to institutional care, particularly for the growing number of elderly in Scotland (DOH, 1989b). With the closure or downsizing of institutions people are moving into the community, “but we are finding it’s not cheaper,” stated a nurse who works with children. “To move a child into the community and have a night nurse with them can cost 54,000 pounds per year,” she said. Nurses are, however, infrequently involved in respite care for children in the home. Some critics of community care state that the main motivation is actually cost cutting, not because community care is cheaper, but because it shifts the burden o f care to families and individuals (Bagilhole, 1996; Davis, 1993; Finch, 1990b). The issue o f respite care and the shift in responsibility for care to families will be the focus o f discussion in Chapter Five. 102 Change: the impact on individuals and their work. Change emerged as a dominant thread throughout the theme o f role confiision, and indeed, through all the major themes. In this section, I explore organisational change within and between Health and Social Services, and the impact o f change on nurses and social workers in their efforts to collaborate Organisational change can be positive for individuals and their work. It can improve working conditions, help workers to feel more valued, reduce inefficiencies, and promote more comprehensive and responsive services. Change can also create disequilibria, distress and confusion The organisational changes that followed the implementation o f the community care reforms were profound. One nurse described the impact as “change upon change” and another nurse said, “The whole system is still in a muddle from all the changes.” Other research also confirms that the reforms posed a major cultural challenge for those working within health and social services, who had to come to terms with radically new philosophies and approaches (Hiscock & Pearson, 1999). Organisational restructuring constitutes a loss o f stability which impacts on individuals in their roles, relationships and the work environment. Stability is a vital ingredient if collaboration between individuals and agencies is to be fostered and maintained. Nurse participants identified proximity o f setting as an important factor in maintaining good relations A health visitor who described good working relationships with social work colleagues stated: We had a care manager based at the clinic for about a year and they moved earlier in the year. And that was very good when they were here because you were able 103 to stop in and have a chat and discuss anyone you were concerned about that might need extra services at all The informality of communication, stopping for a chat, was seen as conducive to building relationships, and the frequency o f contact as helpful in overcoming differences in perspectives. Another nurse expressed the view that pressures on social workers have affected the nature o f working relationships. “They’ve had budget cuts, and change of staff as well,” she said. Organisational change may interfere with opportunity to establish and maintain relationships. One health visitor described the impact: I found there is a deterioration in communication with the Social Work department. There seems to be high mobility. They don’t stay there any length of time for you to develop a relationship with them. Ovretveit (1993) states that the quality o f communication within a team is a good index o f its level of organisation and o f the health o f relationships between members. However, problems that at first sight appear to be communication problems are often problems with the design and structure o f the team (Ovretveit, 1993). Staff mobility and attrition o f staff may be symptomatic o f role strain and overload, often associated with organisational restructuring. Similarly, role overload may be attributed to too much work, too many different roles and expectations, or to taking on a level o f responsibility that is too great (Ovretveit, 1993), and relationships at work may suffer as a result. The collaborative planning in which nurses did participate involved an informal grouping o f practitioners. In informal arrangements, there is no agreed and binding common policy (Ovretveit, 1993), and opportunities for contact are often unplanned and infrequent. These arrangements can be difBcult to maintain even in stable environments. 104 One health visitor described changes not only in relationships, but also in priorities that she has observed since the introduction o f the community care reforms: The other things is childcare I have phoned up and asked them [social services] to take on things they would have taken on previously They just wouldn’t entertain it. They don’t have the funds, they don’t have the staff.. where they used to be able to do preventative work. As noted earlier in the chapter, each profession and agency has different ways o f defining need, setting priorities and planning a service response. Health visitors, in their role with children and families, strive to intervene in situations to prevent crises. Their w ork is aimed at prevention, although their priorities are changing within the GP practice. Preventive care is often the lowest priority, however, for the allocation o f scarce resources. With the introduction o f market priorities in community care, the role o f social workers is now more one o f rationing resources and securing contracts than o f providing services (Ross & Mackenzie, 1996). One nurse found that the change in relationships required her to use pressure to ensure action. She said, “You have to put everything in writing. I used to just phone them up. Now I put everything in writing and they have to take some action ” Lacking power or effective leadership to achieve their aims, nurses may resort to more formal measures to achieve desired ends. Collaborative work may also suffer due to fear and uncertainty. A health visitor suggested that the degree o f collaboration might relate to individual reactions to change: I think it depends on personality. Whether or not you are professionally jealous. There is lots o f that going on concerns about the different roles comes firom professional jealousy, fear o f job loss, and suspicion between professionals. 105 Ovretveit (1993) challenges the popular notion that problems o f cooperation arise from personality conflicts. He states that many problems of cooperation arise from poor organisation and structural contradictions and conflicts. Organisations that undergo massive change create uncertainty arising from loss o f roles, relationships, and resources. Many nurses in the community are already experiencing a loss o f autonomy and control in their work within the context of the GP practice. The competing demands on nurses’ roles in the community may further threaten their autonomy. While practicing within the policy remit o f one organisation, local authority, they remain accountable to health authorities (Ross & Mackenzie, 1996) and increasingly, to the GP practice. In addition, the funding barriers between health and social care may prevent them from realizing their frill role in care (Ross & Mackenzie, 1996). These structural faults are likely to heighten individual concerns about job stability, uncertainty about role changes, and fears o f being devalued. The organisational expectations and structures surrounding nurses and social workers thus appear to pose barriers to joint working. Both are struggling to retain their professional roles and identity in what one writer calls “the murky world o f inter­ professional work”, including the barriers of different organisational structures, priorities, and funding mechanisms (Ross & Mackenzie, 1996, p. 83). A study by Hiscock and Pearson (1999) also confirmed the impact of change on workers. They noted that practitioners in both health and social services were highly preoccupied with the pace o f change within their own organisation and professional environment, prompted by the introduction o f market mechanisms and the drive for cost 106 containment. Thus the development o f external links with others, and joint working was hardly seen as a consideration. There are two additional factors, power and gender, which some writers regard as barriers to collaboration between professional groups and organisations (Hugman, 1991; French, 1995; Witz, 1994). These issues did not emerge explicitly in my discussions with participants concerning the relationships between Health and Social Services, and the nature o f role confusion. I discuss them later, however, in my concluding analyses. The discussions in this theme project a somewhat pessimistic view of the ability of professional groups and organisations to work coUaboratively. Participants I spoke with in June 1999, however, indicated that there are some signs o f improvement in fiinding arrangements to facilitate the provision o f equipment and services, and in other local efforts underway. Successes in joint working may ultimately reflect the effort and commitment o f individuals to improve the delivery o f health and social services. Summary The themes o f role conflict and role confusion demonstrate ways in which government policies, implemented through organisations responsible for health and social care, are impacting on nurses’ roles and their provision o f services. Role conflict underlines the relations o f power among the state, public organisations, and the medical and nursing professions, and the gendered social context in which nurses’ and women’s work are systemically devalued. Role confusion draws attention to the lack of clarity in policies that widen differences already existing between organisations and professional groups, thereby further impeding collaboration and affecting the provision of services to families. While issues o f power do not emerge explicitly in the theme o f role confusion, as 107 I have noted, the struggle for resources is a struggle for power. Government policies may, at times, be deliberately obscure in their intentions, in order to minimize the state’s visible role in that stniggle. In the next chapter, nurses and other participants fiuther describe relationships between policy and nurses’ roles and work in the community. In the first theme, role strain, I explore ways in which, not only the organisation o f care, but also location is exerting pressures and constraints on nurses’ roles. 108 Chapter Four The Location o f Care: Care in the Community Introduction In this chapter, through the themes o f role strain and role fragmentation, I explore the nature of nurses' roles with families and children with special health care needs in the community. Although the focus is on nurses and carers other than families, it is important to remember that fîunilies are the primary carers, and that the roles o f nurses and others involved in the provision o f care are mainly supportive roles Within both themes, government policies continue to emerge as a major force in shaping both roles, and the support that families are receiving in the context o f care in the community. The community is and always has been the primary location of care for most children. Even children with chronic diseases or disabilities have been cared for predominantly in their communities and homes by their families. However, through much o f the twentieth century in Scotland, families have also had the option o f hospitals and long term care institutions, for children who required episodic or long term care by doctors and nurses. While care in the hospitals continues to be available for children with acute care needs who require hospitalization, the nature and availability o f chronic and even episodic or acute care are changing. Chronic and episodic care include, in nursing terms, both direct and indirect care. Direct care is the hands-on care provided by nurses, and/or the management of tasks that promote or maintain physical health, medical stability or comfort. Indirect care involves the planning, coordinating, educating, supporting and training that must go on to ensure that the family and child’s needs for management o f illness, health maintenance and 109 health promotion are met. Care also signifies the relationship that develops and exists between nurses and children and families. Care is changing with its relocation from hospitals to the community. Changes in policy, technologies, organisations and attitudes are contributing to a new type o f care in the community. Policies o f the 1990s in Scotland and the UK have promoted the concept o f care in the community, primarily for the elderly and other dependent groups in the adult population, as well as changes in the nature and location o f care for children whose care requirements were previously met by nurses in hospitals and institutions. The roles o f nurses in the provision o f care are changing to respond to a shift in the provision o f increasingly complex care to families and other carers in the community. At the same time, nurses’ roles are becoming fragmented into more task-focused and technical care as boundaries shift between nurses, families and other carers. The expectations surrounding the nature and provision o f care for children with special health care needs are outlined in public policies that address the respective roles o f governments, statutory, voluntary, and private agencies, and families. For example, some o f the expectations o f nurses and families in the provision o f care are made explicit in policy. The roles o f nurses in community care are referred to, for example, in Caring for People (1989b) in terms o f the part they play in the primary health care team. Expectations o f nurses and families are also contained in implicit policy - that which is operative (Twigg & Atkin, 1994). Policy may also have unintended consequences affecting those for whom the policy was not specifically intended. The themes that follow reveal implications o f policies for nurses, and ultimately for families. 110 In the theme o f role strain, I explore pressures for nurses to take on new components o f work, and I discuss some o f the changes emerging among nurses as a profession. In the theme o f role fragmentation, I extend the discussion o f emerging changes to explore ways in which nurses’ roles and work are being divided, as well as changes to nursing itself. The discussion o f these changes prepares the context for Chapter Five, in which I explore the changing roles o f families. Role Strain “Health visitors may not be trained to do the tubes.” Nurses are experiencing pressures on their roles associated with the shift from care in institutions to care in the community. These pressures may be described as role strain. Goode (1966) first described role strain as the difficulty people have in meeting their role obligations, and attributed strain to limitations in the allocation o f energies to fulfil role obligations. However, this way o f conceptualizing role strain does not reflect the experiences o f nurses as described in the interviews. In my research, role strain emerges as pressures on nurses to meet new role obligations and expectations, which arise in the context o f policy developments, organisational changes, and other trends that are reshaping nurses’ work with families. Role strain also arises in the context o f emerging change in families’ roles, as families and other carers take on responsibility for nursing tasks including technical care for children with special health care needs. I explore role strain through a discussion o f three sub-themes; the nature and complexity o f care in the community, role change, and generalist versus specialist roles. Ill The Nature and Complexity o f Care in the Community The nature o f care for children in the community in Scotland is becoming increasingly complex. Care which once occurred only in hospitals is now taking place primarily in homes. Participants described the changes occurring in the care o f children in terms o f three main factors: policies, technology, and attitudes. Policies. The community care reforms o f the 1990s, as mentioned, were mainly intended to reduce the institutional costs for the growing population o f elderly in Britain, as well as for people with learning disabilities and mental illness. One o f the goals stated in the reforms is to enable these groups to lead independent lives in their homes or in homelike environments to the extent possible (DHSS, 1989b). Although the legislative context of community care was intended primarily for adults and children over sixteen years, one participant in an administrative role described the influence on care for children: The Community Care Act has likely influenced thinking about the care o f children in the way that it did adults, perhaps especially with respect to children with learning disability, that is, if adults with learning disability were going to be in the community then children shouldn’t be admitted to hospital in the first place... It is always difficult to assess the extent o f the impact o f the piece o f legislation because o f other changes in thinking that were going on - people feeling that admission to hospital should be increasingly the exception for children both drove the legislation and was driven by it. The Community Care Act 1990 and its associated reforms thus appear to have had an indirect but profound impact on the care o f children in Scotland, an effect associated at least in part with the nature o f policies themselves. Policies emerge in a cultural context and are influenced by societal values and trends. There had long been a societal view that children institutionalized for any reason, usually children that are learning disabled or who have been taken into care by the state, could be better cared for with families or in 112 family-like settings. In line with this thinking, policy initiatives have been underway for many years in Scotland to reduce the length o f stay for children in hospitals and to move children living in institutions to their homes or smaller home-like places (Scottish Office, 1999). The costs o f institutional care also advanced the need to restrain costs in acute and long term care and to promote options for community care. Thus, although the community care reforms were intended for adults, they propelled changes already underway in the care o f children. “It was,” stated the administrator, “an idea whose time had come.” Some participants described a direct correlation between The NHS and Communitv Care Act 1990. implemented in 1993, and the care o f children. One nurse who works with children said, “Before the Act, children with special needs would have just stayed in hospital, but now we are moving them to the community.” Another nurse stated, “The emphasis now is on care in the homes unless it’s unavoidable to come to hospital.” The reforms appear, therefore, to have propelled two trends, moving children out of institutions and keeping them out. Most o f the children who have resided in long term institutional care in Scotland, primarily children with learning disabilities and other health problems, have now been discharged to their families or to homes in the community. In Fife, I visited one o f the community homes where four children who had been in institutions for the learning disabled are now cared for by carers hired by the voluntary sector, and in this setting, I was able to observe the nature of their needs and care. Although there are still some children living in institutions in Scotland, the numbers are reduced, and there are few new admissions. One participant indicated that there are still one or two schools in the 113 voluntary sector in Grampian that take children with various disabilities, usually with some element o f learning disability or challenging behaviour. For the majority o f children who now have or will develop chronic illnesses or disabilities, however, care will be primarily at home with their families. The trend toward the provision o f care for children at home is consistent with guidance in The Children fScotland^ Act 1995 (Scottish Office, 1995) the lead legislation relating to the provision o f services for children. One participant said that the Act enshrines children’s rights, derived from the UN charter, and places a large responsibility on local authorities for children’s planning. The Act also emphasizes the responsibility o f parents for the upbringing o f their children and for promoting their health and well­ being. Guidance to the legislation states: Most o f the work to help children in need whose health or development may be impaired is carried out with children living at home and being cared for by their parents with support from social workers and services such as day care, family centres and primary care services. (Social Work Services Group, 1997, p. 2) Because the Children’s Act is relatively new, it is unclear how it will influence the role o f the state versus that o f the family in the provision o f care over the long term. A social work participant stated that it is too early to anticipate its full application in the provision o f services to children with special health care needs and the effects on families. However, my research confirms the central role of policies o f the 1990s in shaping the provision o f care by families for children with special needs. Technology. In addition to the influences o f policies, technology has also played a role in facilitating and promoting changes in the care o f children. The influence o f technology was described by a nurse in the study as a force for change that is both helpful and 114 problematic. She said, “The complexity o f services is increasing as children live longer. We are problems o f our own success.” Only a relatively small percentage o f children with special needs require technology in their daily lives, but the use o f technology in health care generally is creating a growing number o f children for whom complex technological care is required. For example, developments in neonatal care have provided the capacity to sustain life for pre-term low birth weight infants who might otherwise die. Some o f these children su£fer from respiratory and other chronic conditions requiring the use o f supplemental oxygen and even mechanical ventilation. Similarly, technology has helped to increase the longevity o f children with chronic illnesses and disabilities. According to one nurse participant, children with cystic fibrosis, who until recent years would have died in their teens or early adulthood, are now living into their late twenties and thirties. Many have intravenous therapy at home during the course o f a month, and some will go on to have lung or liver transplants that may even further extend their lives. Tatman and Lessing (1998) cite UK data derived from an Office o f Population Censuses and Surveys (OPCS) General Household Survey which showed that the prevalence o f chronic illness in childhood more than doubled between 1972 and 1991. The prevalence o f children who are dependent on or require some form o f technological intervention in their daily lives at home is also increasing. One nurse who works with children and families described trends she has observed in the past five years: Currently in the area between Grampian and Inverness, we have three children ventilated, and five with tracheostomies. More kids requiring oxygen are being sent home... We have a number o f children with cerebral palsy. There are concerns about aspiration, they need suction at home, some have a gastrostomy. 115 We have lots o f gastrostomies. Also lots o f kids with N/G’s^ [naso-gastric tubes] who will later have surgery. Another nurse involved with the care o f children, said that nurses were seeing more children with tube feeds, and new ones every month. In Grampian and the Northern Isles during the autumn of 1997, there were fifty-nine children with feeding tubes living in their homes. By the summer o f 1999, however, this pace had not been sustained. Such fluctuations in numbers demonstrate one o f the difficulties in planning and providing for this group o f children. Until recent years, the administration o f enteral feedings to children through tubes positioned in their nose or stomach (gastrostomy) was rare, and would have been unheard of outside a hospital environment. Similarly, other requirements for care are now being met in homes and to some extent, in schools. This care may include suctioning of secretions from the airway, seizure management regimes, the administration o f medications or nutrients by oral, systemic and enteral routes,^ and the provision o f treatments to reduce the severity and pain o f musculo-skeletal deformities. Technology facilitates this transition to community care by providing compact, mobile equipment that can be used in homes, schools, and other community settings by children, families, nurses, and other carers A nurse described her efforts to access money for a portable gastrostomy pump so that a “Mum and her child can get out more." With this type o f practical assistance and care, many children with special health care needs are able to lead relatively active lives in their homes and communities. ' Naso-gastric tubes are inserted through the nose, down the esophagus and into the stomach sometimes as a temporary feeding tube until a gastrostomy tube is surgically inserted in the stomach. ^ The systemic route refers to a route into the body, for example, by injection or an intravenous; enteral route refers to entry into the stomach or intestinal tract, for exam|de, a suppository or gastrostomy tube. 116 Attitudes. In addition to the changes associated with technology, attitudes toward people with disabilities and chronic illnesses are also changing One nurse in a specialist role explained, “There is an increased willingness to give nutritional support to children who in the past might not have got it.” Instead o f asking ‘why are we doing this?’ now doctors and nurses are saying ‘why aren’t we doing this? ” she said. Attitudes toward health, illness and disability are socially constructed and culturally driven. Attitudes toward disability, for example, generally reflect a social rather than individual phenomenon (Middleton, 1992) and tend to be based on a perceived norm. Decisions made, however, by health care professionals and families concerning the care o f a child may gradually influence the norm. As more children with special health care needs live in the community, there is an increase in the visibility and viability o f children with disabilities functioning with or without technological supports and adaptations. Over time, the attention shifts among health professionals and others from the disability and its limitations to the child and his or her potential, from “why” to “why not?”^ Attitudes toward illness and disability also appear to be changing in response to resource rationing. Participants from various sectors put forward the view that hospital beds should be used only for those who are acutely ill. Hospital admissions at one ^ For example, I observed these attitude changes toward children with disabilities among professionals in my own work of planning for the discharge of children from hospitals and institutions. At initial planning meetings, doctors and nurses often were reluctant to consider the government mandated discharge of children in their care. Several doctors stated: “These children [with complex disabilities] don’t usually live very long.” Many of the doctors and nurses had only seen these children living and dying in hospitals. But when I accompanied some children and their families for follow-iq> care after discharge, I saw a gradual shift in attitude from pessimism concerning a group of children to a recognition of the individual child with his/her own unique ways of being and communicating, a greater willingness to offer treatment, and an expressed satisfaction with positive outcomes subsequent to discharge. 117 hospital had been recently audited to determine whether admissions for children reflected the appropriate utilization for acute care or whether they were providing respite to families. The audit suggested that they were not providing respite, although as Lindsay et al. (1993) indicate, the cause for admission may not be stated as respite Decisions about the utilization o f resources are driven at least in part by their scarcity, thereby shaping attitudes about what constitutes appropriate hospital or community care. In the descriptions o f nurse participants, government policies have been an impetus to profound changes in the care o f children with special health needs. Policies arise, however, in a socio-cultural and economic context in which technology and cultural attitudes have helped to create an environment that has enabled the changes to occur. The next sub-theme describes the nature o f role changes and their effects on nurses’ work. Role Change: Reconstructing Communitv Nurse Roles There is an assumption that the role of the nurse can be recognized and that it has discrete boundaries, content, and expectations. However, the shift to care in the community for children is exerting pressures on nurses’ roles that are contributing not only to role change, but also to a reconstruction o f roles themselves. This sub-theme expands the theme o f role strain by exploring pressures toward change as nurses support families who themselves are providing increasingly complex and technical care for children. Caring for People (1989b) addresses the role o f nurses and other statutory service providers in stating that they should “do all they can to assist and support carers” (p.9). Role change is explored through three dimensions: the pressures on traditional 118 community nurse roles, changes to role content and conception, and resistance and adaptation to change. Pressures on traditional communitv nurse roles. The roles o f nurses are often described by the work they provide to a population within a given location. Health visitors and district nurses, for example, have a lengthy history o f work in the community. They are among a diverse group o f nurses who comprise the specialization o f community health nursing in the UK (Ross & Mackenzie, 1996). Within their specific disciplines o f district nursing and health visiting, both provide generic services to a broad population. They also have a common core training that they undertake prior to pursuing their practice preference. The roles o f nurses are also described by the components o f work they provide to a population. A manager referred, for example to the direct care component of the district nurse’s work in describing the district nurse as “equivalent to the ward nurse, but in the community” . A major feature o f district nursing work has been with elderly people in their homes. Similarly, health promotion is a major component of health visitors’ work. Although health visitors work with people across the age spectrum, their focus has been health promotion with children and families. As discussed, however, in Chapter Three, health visitors are gradually taking on more clinical and group work associated with the GP practice. The traditional roles o f health visitors and district nurses are changing. Increasingly, they are becoming involved in the care o f a growing number o f families and children with special health care needs, although their work with children with complex and technical care requirements has only emerged since the shift from hospital care to the 119 community. Currently in Grampian, the numbers of children on district nurses’ caseloads are proportionately small. According to one manager, district nurses with caseloads of sixty to eighty patients may have “a few children.” Health visitors, whose caseloads average two hundred children from birth to five years, will have a number of children with special health care needs that varies depending on the population and the GP practice involved. One nurse specialist described some o f the role-related changes involved: Health visitors don’t like hands on but will order supplies. District nurses will be more hands on, but district nurses may not be children trained. Health visitors may not be trained to do the tubes. Sometimes neither wants involvement. The care requirements for children with special health needs are presenting pressures for nurses to take on new components o f work, which are centred primarily in the management or provision o f direct and often technical care for children The provision of direct care lies outside the role o f health visitors, and district nurses do not usually work with children who have special health care needs. The pressures o f change challenge the way nurses conceive their roles. Changes to role content and conception. The pressure to take on work that lies outside one’s role poses new expectations about what constitutes the role content. I have defined role content as the theory, knowledge, and skills that comprise the role. The pressure to take on work that lies outside one’s role also challenges the way one identifies with and defines the role. This process involves role conception, the way one conceives o f self as a nurse. Corwin and Taves (1962) define role conception as the images o f the rights, obligations, and expectations that a person perceives to be associated with the role. Experienced nurses 120 who have already developed a conception o f themselves as nurses, and o f the work they do in that role, may be reluctant to integrate new expectations that call for changes in the way they work and conceive o f their roles. In the next sub-theme, I will discuss this issue of resistance and adaptation to change The uncertainty arising from role changes was a central concern for one nurse in her efforts to access help for families in the community: I don’t know who to ask for to provide the family [nursing] service. It’s different for every child. Each time, you have to determine who will help. What is their level o f understanding o f the child? What is their expertise? What is their role? Those now seeking to access services on behalf o f families, or families themselves, can no longer anticipate the role required or the level o f expertise that will be offered by the individual in that role. “The role is changing all the time”, said one health visitor, “it’s running to keep still.” The services sought may not fall within the role o f either the district nurse or health visitor because neither has been previously required to give this care to children in the community. The nature and composition o f the role has become, therefore, unique to the individual nurse, based at least in part on the extent to which the nurse is able to gain the knowledge, skills and experience required to frilfrll new obligations. Uncertainty is heightened because the needs o f each child and family are also unique, and the knowledge and skills that may serve in one situation can prove to be inadequate to meet the demands o f another. In essence, the roles o f nurses in the community are in a process o f reconstruction as both the expectations surrounding the role content and conception are changing. Yet the rapid and continuing process o f change has thus far precluded a process o f resocialization to new roles. Resocialization involves a process o f redefining a role to a 121 changed theory base and new role expectations, and forever alters the sense o f “what nursing is...” (Hickey et al., 1996, p. 34). This process is confirmed when individuals within the group that comprises the nurse’s fi'ame o f reference, for example, other health visitors or district nurses, also ascribe to the changes. The reference group thus provides a set o f norms, values and a standard for performance in a given role (Hickey et al., 1996), fi-om which normative role expectations evolve. It is unclear how far role reconstruction will proceed, or whether nurses will be resocialized to new roles. Education is a vital component in facilitating new role expectations, however, a nurse in a specialist role described the education for nurses that is taking place as mainly “on-the-job training for health visitors and district nurses before a child is discharged fi-om hospital” so that the nurses can provide the appropriate care and support to the child at home. The training nurses receive prior to a hospital discharge differs fiom the educative process required to enable nurses to integrate new theory and expectations. The former involves the requirements and expectations for child-specific care, for example, assisting families to provide enteral nutrition. The latter involves coordinated planning between the nursing profession, educators, nurses and their employer organisations, for example, to assist nurses in acquiring and adapting to new role content. In the context o f rapid change, this educative process does not appear to be taking place. This view is supported by Perkins and Billingham (1997) who state that the needs o f children and families in the community today do not seem to match current nursing roles and services. The third factor under the sub-theme o f role change describes nurses’ responses to change. 122 Resistance and adaptation to change. In Chapter Three, I discussed the impacts o f organisational changes on nurses in their working relationships with social workers. In this section, I consider ways in which nurses are responding to the pressures promoting role change in their working relationships with children and Bunilies Tyson and Jackson (1992) suggest that adaptation to change is largely consistent with an individual’s main personality attributes. However, they also note it is the situation and the environment that determine the response and behaviour that take place. Resistance, on the other hand, is one o f the ways individuals may react to and cope with the stress associated with change (Wade, 1993) including threats to role concept. Some nurses are responding with resistance to the expectations and requests o f families. A health visitor described resistance to the request made by a family for technical help: A child with a central venous line came home from hospital to be cared for by her parents. Mum didn’t want to change it [the central venous line]. She wanted a nurse to do it. But the district nurse wouldn’t help change it. She felt she didn’t have the skills. The health visitor wouldn’t help. Mum finally went to the hospital to get the help. The care needed for a central venous line, an indwelling line implanted near the base o f the neck into the large vessel that enters the heart, involves nursing knowledge and skills which have implications for comfort and safety. Children are being discharged from hospital with this and other care requirements for which nurses in the community either are not trained or may not have current skills. Nor may this type o f care provision be consistent with their role expectations. 123 Role strain is associated with change or the pressure to change. These may be marked by anxiety, uncertainty, and stress (Camall, 1990). Any change process involves not only learning something new, but also unlearning something that may be already well integrated (Itzin, 1995b) into roles and relationships. A nurse who provides training to other nurses described fear as a factor affecting the willingness o f nurses to take on specialized care. She spoke of the differences she observed between rural and urban** nurses in particular, and stated, “City nurses are very frightened doing things for children, such as kids on ventilators.” Ventilator care has been, until recently, perceived to be intensive hospital-based care, thus, having to cope with new technology and change can constitute a source o f role strain. Nurses have not initiated role change out o f a desire to alter their roles. The pressures to take on new role obligations have arisen in the context o f changes associated with the shift from institutional to community-based care, and nurses have not been involved in the planning and implementation. Thus the process o f change must be understood within and managed by the organisations in which the changes arise. As I demonstrated in Chapter Three, however, organisations themselves appear to be struggling with change During the research process, I found that some nurses show a greater readiness than others to adapt to new role expectations, whether or not they have organisational support. One nurse described, for example, the responsiveness o f some nurses to families in their need for direct nursing care; If there weren’t enough district nurses in the practice to take on direct care, GPs would direct health visitors to do the work. Or it could also be part o f a good will *"Differences in the roles of urban and rural nurses emerged in n y research, however, the findings must be further explored and discussed in another stu ^ . 124 by the health visitor to aim toward continuity, that is, the health visitor might provide direct care if they are already involved with the family anyway Health visitors are already experiencing a number o f other demands for role adjustments associated with changes to their work within the context o f the GP practice, as discussed in Chapter Three. This example further illustrates the impact o f the GP practice on the nature and content o f nurses’ work It also illustrates adaptation at the level of the individual suggestive o f role flexibility. Role flexibility may reflect an individual’s coping style, but it may also be understood as an organisational strategy that is gendered. Newman and Williams (1995) suggest, for example, that in attempting to make sense o f the consequences of organisational changes, we must “consider a more multifaceted and fluid understanding o f the category ‘woman’” (p. 108). In this view, the organisation searches for flexibility in professions such as nursing, with employees being increasingly expected to deploy a range o f skills and a flexible approach (Newman & Williams). Role flexibility is more complex, therefore, than an apparent adaptation to strain. In the third sub-theme under role strain, I expand on this notion of role flexibility in a discussion o f an emerging division o f work between generalist and specialist roles Generalist versus Specialist Roles The increased complexity o f care in the community is exerting pressures on traditional nurse roles, while at the same time, creating an increased need for nurses in specialist roles. Although participants did not frame their discussions in terms o f a generalist versus specialist debate, their views reflected this dichotomy. The distinction between generalist and specialist nurse roles is confusing. Haste and Macdonald (1992) describe a number o f key elements used to define a specialist 125 nurse. These elements include specialty training, role independence, personal accountability, and being an expert. In contrast, nurses are considered generalists to the extent that they can respond with a certain level o f expertise to a range o f needs, conditions, and population groups (Perkins & Billingham, 1997). The term generalist tends to say more about the provision o f generic or broad-based services than about the characteristics o f the nurse. Yet, as noted in the preceding discussion, generalist nurses may also receive training to take on specialized care I will discuss trends in Scotland regarding specialist and generalist nurses under three sections: community children’s nurses, learning disability nurses, and emerging specialist roles Community children’s nurses Currently in Aberdeen, health visitors and other nurses in generalist practice are unable to meet all the specialized care requirements for children in the community. According to one nurse, “Some children are in home with mechanical ventilation under acute management [by nurses] from Sick Children’s This means that where nurses in the community are unable to provide the skills required to care for or assist families in their care at home, pediatric hospital nurses who, in this example, have the technical skills to manage ventilator care, provide their expertise. The nurse said that there is an aim in some jurisdictions “to have specialist nurses in pediatrics^ trained to care for the child in the context o f the family ” The availability o f specialist children’s nurses working in the community could potentially relieve the strain on the roles o f generalist health visitors and district nurses and fill gaps between newly emerging specialty roles in Scotland. ^ The main acute care hospital serving children in Aberdeen and the North East of Scotland. ^ A nurse with advanced education in pediatric care as distinct from a nurse in a specialist role who may or may not have advanced pediatric eduôtion. 126 Increasingly, there is a perceived need for children’s community nursing to provide care and support to children and families in their homes (Whiting, 1997). One nurse in a role working with children described the need “to strengthen links between the hospital and the community”. Having a trained pediatric nurse is very reassuring to parents, she said. Education and experience in pediatric care prepare the nurse to understand, assess, and promote the child’s optimal physical, cognitive, and emotional health through the developmental stages. Education and experience in community nursing prepare the nurse to understand the role o f the family and community systems integral to the health of both the child and the family. Thus a combined pediatric and community education emphasize pediatric clinical knowledge and skills relevant to community and home settings (Whiting, 1997). Yet not all nurses support the requirement for specialist children’s nurses in the community. One nurse participant, for example, stated, “Grampian doesn’t have enough acutely ill children [in the community] such that there is a requirement for pediatric trained nurses to work in the community ” The nurse did, however, see a role for specialist children’s nurses to “start providing consultation in the community to other nurses” and added, “A general model is common throughout Scotland.” In this model, a limited number o f specialist pediatric nurses would provide consultation to generalist nurses in the community, rather than creating a team o f specialist nurses The model was under consideration in June 1999 when I conducted follow-up interviews. This model is consistent with the view o f Perkins and Billingham (1997), who suggest that it is necessary to address the training needs o f nurses already in the community without expecting them to receive specialist training. 127 This approach to service provision reflects a management strategy common in times o f fiscal restraint. It is a way o f dividing labour, aimed to deploy generalist or flattened roles that can provide a broad base o f service and absorb staff cuts and service reductions, while reducing the number o f higher cost jobs. Higher cost specialized services, if they exist, are often the first to go. This strategy is consistent with the organisational search for functional flexibility discussed in the preceding sub-theme Thus, under the rhetoric o f flexibility, nurses’ labour and skills are being used in new ways as jobs change, with increased pressure on staff to become multi-skilled and to take on multi-functional roles. This approach often intensifies employment inequalities (Newman & Williams, 1995) as a predominantly female nursing workforce takes on an increasingly greater workload. One nurse, herself in a specialist role, stated that there is also a pressure from GPs to flatten roles because o f costs. Although most community nurses working in primary care are not employed by GPs, it is generally acknowledged that the thrust o f primary care is GP led, as demonstrated in Chapter Three. Yet the issue for GPs surrounding the specialist nurse role may not solely be one o f costs. One nurse participant said that GPs want to see the inclusion o f more nurse roles in the GP practice, and added, “GPs are not happy that school nurses did not go into the GP practice...where they will be used as handmaidens for GP clinics.” Similarly, nurses in specialist roles tend to work outside and are autonomous from the GP practice. Thus the issue, I believe, may be one, not only o f costs, but also o f control. Nevertheless, there is actually an increase in some specialist positions evolving in Scotland, which I will discuss later in this sub-theme, regarding new emerging roles. 128 Trusts in Glasgow and Edinburgh employ pediatric community nurses. In Aberdeen, there are a number of nurses with a range o f educational qualifications who are filling the role o f specialists working with children who have special health care needs. Learning disability nurses. In contrast to the differing views concerning children’s community nursing, a generalist trend seems likely for those children and adults specifically designated as learning disabled. Generic services, in this regard, are those that meet the needs o f the general population. A nurse in the learning disability field described the trend: With the closure o f specialist hospitals such as Woodlands [in Aberdeen], more people have treatment at the generic services...Health is going to push for more generic service. The service will fall down...The social worker learning disability team has been scrapped. Although children with learning disabilities are often among those with special health care needs, their care is commonly viewed in the context o f care to the learning disabled. This care is shaped by a philosophical debate, one that has its strongest voice among some advocates for children and adults with learning disabilities. The underlying view is based on the principle o f normalization, which calls for a demedicalization o f disability, and a recognition that disability is socially constructed (Ross & Mackenzie, 1996, p. 130). One nurse in the learning disabilities field described changes in the nature o f care for people with disabilities: The future of nurses in the area of learning disabilities is bleak. Shortly nurses will not be trained in this field. The thrust o f community care is to social care, social services provision. Nurses are not normally involved in this [social care]. Proponents o f normalisation perceive that people with disabilities need social care, that is, assistance with daily living. One o f the main emphases is on inclusion in society. Specialist services are understood to set people with learning disabilities apart and 129 reinforce their separation from the rest o f society. People with learning disabilities should, therefore, be provided services within the framework o f generic services available to all (Alaszewski & Wun, 1994). Community care, which separates health from social care and emphasizes the latter, appears to reinforce this view. Jones (1989) suggests, however, that one o f the unintended effects o f the philosophy o f normalization is that it is used to justify limiting resources to those that are generic. In other words, if children or adults with disabilities are to be treated like others in society they should receive the same services. Yet it is reasonable to question whether this assumption, coupled with cutbacks in social and health services, leaves families and their children vulnerable (Abbott & Sapsford, 1987; Jones, 1989). In my experience, many children and adults with learning disabilities have health problems that often are simply not addressed or go unrecognized/ Research studies also demonstrate that the health needs o f people with learning disabilities are less well met than those o f the rest o f the population (Cook, 1998). These health problems often include the need for both health and social care. People with disabilities should, in my view, be fully included in society, but they should also have access to health care and where needed, specialized services. Whether the focus is children or other groups in the community, the availability o f resources in the community is the fiilcrum on which the issue o f specialist versus generalist care swings. Participants from all sectors described community care as understaffed and under-resourced. Furthermore, resource constraints in the public sector frequently have their greatest impact on women who predominate in part time, lower For example, in British Columbia, health professioiials have begun only in the past few years to recognize the potentially serious health effects that often occur in persons with Down’s Syndrome, particularly as they age. ’’ 130 salaried and service oriented roles (Armstrong & Armstrong, 1996). Nurses, as the largest group o f employees in the health sector, the majority o f whom are women, are experiencing the pressures o f resource constraints on their work with children and families. It is apparent that a long term trend toward generalist nurses in the community is likely, given that the rest o f Europe is moving in this direction (Cole, 1997). Emerging specialist roles. Despite the expected trend toward generalist care, there is actually a burgeoning in Scotland of new nurse roles, many o f which are specialist roles. Some o f these are emerging to bridge the need for specialized care that cannot be met by traditional nurse roles in the community. Among nurses in specialty posts who participated in the research, most had obtained their positions within the past five years. This fact indicates that new nurse roles have been developing in community care subsequent to the Act. Some o f the nurses directly stated that their roles developed subsequent to the Act and the changes it initiated in community care. Specialist positions serving families and children with special health care needs in Scotland include hospital-community liaison nurses, nutrition nurses, palliative care nurses, and nurses working in disease-specific outreach posts in either hospital or community settings. Surveys (Laurenson, 1997; MacPherson, Donald, Caldow, & Kiger, 1996) conducted in Scotland also confirmed the development o f new and specialist nurse roles. MacPherson et al. (1994) conducted a survey on the role o f the specialist nurse and identified sixty separate job titles among one hundred and eighty-four respondents who used the title o f specialist nurse. They found a broad range o f qualifications and employment patterns among those using the title. Although MacPherson et al. did not 131 identify the length o f employment in these positions, the specialist nurses were described as one o f the more recent developments arising in the past five years in Scotland. Approximately fifty percent o f the nurses identified work with either adolescents or children as part o f their responsibility (MacPherson et al., 1996). It is unclear to what extent the demand for more complex care in the community for children has contributed to the overall development o f new nurse roles. However, it is apparent that the community care reforms, although not intended for children, are contributing to profound changes in care in the community for children, and to new ways o f organising nurses’ roles and nurses’ work. In the theme o f role strain, I have explored pressures that nurses are experiencing, including those that are leading to a reconstruction o f roles themselves. Many o f these pressures arise fi'om policy and organisational changes that are thrusting more technical and complex care for children on nurses not accustomed or educated to provide this care. There is little research to demonstrate whether the pressure to take on this new work may be damaging to the important work nurses now do with families and other groups in the community. In the next theme, role fragmentation, I explore further changes in nurses’ roles and in nursing itself, as nurses’ roles with families become increasingly fragmented. Role Fragmentation “There is a lack o f clear criteria about who does what ” In this theme I explore changes to nurses’ roles and work with families that are occurring as both become more narrowly defined into role components or functions. The components of nurses’ work, activities which constitute nurses’ roles, are being divided, not only among nurses and families, but also other non-nurse carers 132 The notion of fragmentation is confirmed in one analysis which states that there is a trend whereby the skills o f those in helping services, such as nurses, are being broken up in line with the fragmented market and its provision o f services from a multiplicity of sources, including public, private, voluntary and informal (Gough, 1994b, p. 258). The discussions in this section will provide content and meaning to this statement. The fragmentation o f a role into components or functions is not unique in nursing history. At one time, hospital nurses, for example, sometimes structured their work on a ward in a way that one nurse assumed the primary role function o f administering medications to all the patients. Thus, for a given day or week, the nurse’s role was that of medication nurse while another nurse might be the dressing nurse who spent the day changing dressings. This approach may be understood as a way o f dividing labour. The shift to care in the community is, however, promoting unprecedented change in the division o f nurses’ work. The concept of holistic care is being altered as nursing itself is redefined and more nursing work is divided among nurses and non-nurse care providers. This discussion considers dimensions o f role fragmentation for nurses working with children, and their real and potential impacts on families. The dimensions are explored in two sub-themes; deconstructing nurses’ work and reconceptualizing nursing. Deconstructing Nurses’ Work Deconstruction is a term used commonly in feminist research to describe a breaking down or pulling apart (Humm, 1995).^ The term applied in this research ^ There are various philosophical streams that offer ideas related to deconstruction. The term is used in my research to suggest the dislocation of a stable or essential meaning (Humm, 1995). 133 underlines, not only fragmentation, which concerns a separation into parts, but also the way in which roles are both socially constructed or deconstructed. Those managing various parts o f the health care system are using strategies aimed at reducing the costs of health care in the community. In the theme o f role strain, I discussed strategies to reduce costs by dividing work among nurses in generalist roles and between nurses and a relatively small core o f specialists. Another strategy is, however, to divide nurses’ work, not only among nurses, but also among families and other carers. These strategies are deconstructing the holistic nature o f nurses’ work. I discuss deconstruction with reference to two primary issues: holistic versus fragmented care, and the responsibility for care. Holistic versus fragmented care. Principles o f holistic care are foundational to nursing practice As mentioned in Chapter Three, holistic care mandates a focus on the whole person, and the recognition that the parts o f an individual are interconnected and interdependent (Kramer, 1990). The commitment to holistic care is expressed in the document, the Scope o f Professional Practice (1992), which guides the practice o f nursing, midwifery, and health visiting in the UK. The document states that the nurse, midwife, or health visitor must ensure that any adjustment to the scope o f professional practice must be achieved without compromising or fragmenting existing aspects o f professional practice and that a concentration on activities can detract from the importance o f holistic nursing care (UKCC, 1992). One nurse in a specialist role described the division o f work that is occurring for some children in school and home settings: 134 Some schools hire bank nurses to come in and do a feed. A lot o f district nurses aren’t pediatric trained. But health visitors deal with children. They may both end up seeing the child, the district nurse for the pump, feed and so on, and the health visitor for growth and development. This description o f care reflects a division o f work structured primarily around technical or task-oriented care. In the example given, the roles o f the ‘bank’ nurse, a nurse hired by a private agency, and the district nurse are concerned primarily with the provision o f direct care related to the gastrostomy equipment and/or feed or potentially to some other technological device. This division o f work reflects a departure from the holistic perspective that underpins nursing practice. Underlying the principle o f holistic care, there is recognition of the need for the nurse to have knowledge about the child’s environment, other health issues the child may have, and the learning and support needs o f family members and others caring for the child. One obligation in the performance o f a task, such as doing a feed, or changing a tube, is to ensure that the nurse has knowledge about and a relationship with the child to the extent that s/he can promote comfort and safety. The hour or so provided by the bank nurse who goes to the school to administer the feed is, therefore, only a component o f the care required. The performance o f the task must also be integrated with theory and knowledge integral to safe, effective care. In other words, there is more to a technical task than just doing it. The safe management of enteral feeding requires knowledgeable carers who can manage, for example, problems associated with reflux and discomfort arising from abdominal cramps that may occur in some children at any time. In holistic care, the nurse does not separate a child’s needs into components or parts, some o f which can be disregarded. Thus, a child receiving enteral feedings also requires mobility, skin care. 135 and a balance between intake and elimination. In the absence o f an holistic approach, who is responsible for assessing and assisting with these other needs, providing the training to carers, and ensuring that knowledge and skills remain relevant and adapted to the child and his/her changing requirements? The responsibility for care: Where is the named' nurse? Holistic care is not only about safe and comprehensive care, but it also concerns the issue o f responsibility for care Participants raised this issue as a concern. One nurse in a specialist role said, “There is no single nurse role responsible” for children with special health care needs. Despite the fact that health visitors, bank nurses, district nurses, and even specialist nurses may be involved with a child, “People need one person they can go to,” she said. These concerns were echoed by one participant from the voluntary sector who said, “There’s a named nurse in the hospital, but not necessarily in the GP practice or community.”* The concept of the named nurse is consistent with principles o f holistic care in which a designated nurse is responsible for working with the client or family to develop an integrated plan o f care based on a comprehensive assessment. Similarly, in family centred care, a concept that also guides nursing work with families, a primary nurse takes responsibility for the overall planning and coordination of care. This concept does not exclude the involvement of other nurses, but it avoids placing the burden for coordinating, planning and even training on families. ^ In the NHS Patient’s Charter Services for Children (HMSO, 1996), childien should expect to have a named nurse in the hospital who is responsible for the nursing care (p. 16). According to the Charter, where there are children’s community nursing teams set up, the sick child who is cared for at home, Âould also be told the name of the children’s community nurse who is responsible (p. 13). 136 Although the notion o f a primary nurse developed in hospital settings, the principles of family centred care are consistent with good community practice During the summer of 1999, a plan was underway in Grampian to review the provision o f care for children in the community and to hire a specialist children’s nurse to coordinate services to children with special health care needs/" Grampian, unlike some areas o f the UK, does not have a community children’s nursing team What are the consequences for families when there is no clearly defined role responsible for assessment, training, education, coordination, and support? One nurse portrayed the burden o f work on families in her description o f what support looked like for one family and child with special health care needs for whom she provided care The young boy involved had complex health problems including epilepsy, metabolic and skin disorders, and the need for a tracheostomy for breathing Over a period o f time, the child and family saw a number o f different nurses in their home for dressing changes, for the provision of respite care, and for assessment and guidance related to disease specific issues. The nurse stated: I worked two days a week to provide respite for the mother. Some nurses worked other days and there were also some nurses who worked different nights. Some came at various times throughout the day. The mother showed me how to do trach [tracheostomy] care. By the time I left, there were about fifteen nurses involved, plus carers... This was not a good model o f care. This example was likely an unusual one in terms o f the numbers of nurses and carers involved and it demonstrates, as the nurse pointed out, an ineffective use o f resources. But it also underscores a reality for families and children - that the processes o f support can actually deplete rather than assist families. Families may be faced with a variety o f Within the past year, money has become available through the Diana Memorial Fund for services to children in the UK. 137 different people in their home providing different aspects o f care In this situation, the mother trained the nurse to look after the tracheostomy so that she could receive respite care. Some o f the value o f nursing respite must certainly be diminished when the parent needs to train a nurse in order to receive respite. Research studies have identified the family’s role in coordinating and managing care with a variety of professionals as a source o f physical and emotional exhaustion (Anderson, 1990; Jones, 1989; Storey, 1993; Tatman & Lessing, 1998). The issue o f co­ ordination is a concern not only for nurses but also for others involved in the care o f families. An article by Watson (1996) on services in Scotland for families who have children with disabilities, referred to a report regarding families who have been in contact with ten different professionals in the previous year, but noted that only 55% o f the parents could identify a person who helped them to access and co-ordinate the input fi’om different services. The role o f families in the provision o f care is explored more fully in the next chapter. The deconstruction o f nurses’ roles, and the changing roles o f families are contributing to a reconceptualization o f nursing itself. Reconceptualizing Nursing Despite the numbers o f nurses and other professionals that may be involved with families, nurses play a decreasing role overall in the provision o f care in the community. As I discussed in this chapter’s introduction, and will demonstrate further in Chapter Five, families provide the bulk o f care The nursing care that is provided, however, is becoming fragmented, not only among nurses and families, but also among other carers " In my own work with families in Canada I learned that, although parents are eager and willing to provide child - specific information, for examine, about comfort measures during suctioning, they do not want to spend their time teaching nurses how to perform technical skills. PaieiUs also want nurses who can help to support their own knowledge and skills. 138 who are not nurses. The latter may be formal (paid) carers from the voluntary or private sectors, and also informal or unpaid. Carers may be anyone who assist families in the provision o f care. This sub-theme concerns the role o f formal, non-nurses carers in the provision o f care. With the growing numbers o f families and carers involved in the provision o f work once considered to be nursing, the question that emerges in my research is: What is nursing? Reconceptualizing nursing involves a new way of thinking, not only about nurses’ roles, but also the nature o f nursing itself. The process o f reconceptualizing nursing is explored in the following sections: Who does what work?, what value is nursing?, and the relationship between cost and nursing care. Who does what work? In the theme o f role strain, I discussed the uncertainty about which nurse would fill what role in the provision o f care to children and families. The uncertainty is heightened as care also shifts to other carers. One nurse specialist described the provision of care by either nurses or carers as “very dependent on who is willing to take on care. In education, for example, some teachers themselves will leam gastrostomies. “Others say it is a nurse’s job,” she said. Another nurse stated that there is a lack o f clear criteria about “who does what, which filters into schools as well. ” The tasks and procedures that have been viewed as nurses’ work are now being taken on by others outside nursing, on either an unpaid or paid basis. Increasingly, non-nurse carers, who are generally lower cost care providers, are involved in the provision o f care in schools, small community homes and respite centres, and in the home as a help to families. One nurse said that there are more carers than ever now, and “they are being asked to do tasks 139 which are medical,” she said. Clearly, the deconstruction o f nurses’ roles is now well underway. It is unclear how far the fragmentation and deconstruction o f nurses’ roles will extend. One participant from a voluntary agency that provides carers, called care attendants, to people ranging in age from infancy to centenarians, described the training and current work o f carers. The care attendants receive basic training in order to provide personal care, medications, first aid, stoma care, and assist with activities o f daily living “We haven’t been asked to give insulin, but could do it with training from a district nurse,” she said. She added that even when a nurse does the training, nurses don’t have an official role for monitoring. Some o f the care attendants are themselves nurses, but the attendant is not there as a nurse, is not employed or paid as a nurse, and doesn’t have to be currently registered. Similarly, in another agency I visited that provides respite care for children and adults with learning disabilities, many staff members are nurses. The care requirements o f the children receiving respite are frequently similar to those o f other children with special health care needs, for example, the need for gastrostomy care and feedings, seizure management, and the administration o f medications. But according to one participant, the nurses’ qualifications are not recognized because it is a social-based organisation. The practice of hiring low cost care providers or o f not recognizing the qualifications o f registered nurses in social care settings may overlook the reality o f the often complex nature o f social care. My understanding from our discussion is that the terni medical was inclusive of nursing. This is potentially a concern, as according to the Scope of Professional Practice (UKCC. 1992) document, registered nurses remain accoimtable to their code of professional conduct, even if their posts do not require nursing qualifications. 140 I explored with some participants the process by which care formerly provided by nurses would be taken on by non-nurse carers One participant made the following distinction between nurses and carers; We have carers doing ventilation now, tracheostomies in mainstream schools...In terms o f how you determine what is nursing - giving IMs [intra muscular injections] by non-nurses is not OK. There are more risks in IMs. But protocols for trachs can be straightforward. There are no situations [in this region] where nurses [from primary care teams] provide nursing care in schools. It’s not seen as nurses’ role. This issue o f safety in the performance o f a nursing procedure appears to draw the boundary between care by nurses or non-nurses. Yet the issue involves important considerations discussed earlier with regard to the holistic nature o f nursing care. Nursing is more than the visible demonstration o f a psycho-motor skill. For those outside nursing, however, the procedural component o f nursing work may be all that is understood about the nursing role. If nursing care is perceived only as tasks that can be safely guided through the use of protocols, then there is no need for a nurse. In addition, while some procedures are relatively straight-forward, the care required may not be. An individual’s needs may be complex and unpredictable, requiring nursing judgment that cannot necessarily be described in protocols. Some procedures, like changing a tracheostomy tube weekly, are required only on an episodic basis. Unless the child has consistent carers, there may be little opportunity for a number o f different carers to develop their skill and safety over time. If the issue o f safety is to be folly addressed, these factors are also considered in determining who provides care. The question arises: Who decides on the care provider? One nurse described the process for determining the safe provision of respite care for a child following hospital discharge: 141 Usually a consultant [medical specialist] makes the decision There may be a difference o f opinion. We all go around the table and decide. The idea is that a carer is capable o f doing any task they are trained to do which parents do. I have carers who are asked to change a trach tube or a g-tube [gastrostomy], and we have all o f them come in and train them. If we feel they can do it safely, and they feel they can, then we go ahead. Nursing tasks are being handed over to carers in the community, but if there is a difference o f opinion it is doctors who ultimately decide, even though it is nursing care, not medical care that is involved The process resembles one o f delegation, in which a doctor delegates medical care to a nurse, or a nurse delegates to a nurse assistant. Yet the process is not one o f nursing delegation, since nurses do not necessarily retain the responsibility for monitoring and evaluating the care given by carers. If a care assistant or other non-nurse carer is performing a task, formerly considered nursing work, the principles governing nursing practice have no jurisdiction, unless the assistant is calling himself a nurse or is providing care under a nurse’s supervision.^'^ The issues of judgment, unpredictability o f individual response, and continuity, which nurses would normally consider in deciding whether or not it is safe to delegate to non-nurses, may not be understood or recognized by those involved in the decision. According to some nurse participants, this issue o f responsibility for assisting carers has not been filly addressed. There are indications, however, that nurses are beginning to take a formal role with carers in the community. During the interviews I conducted in July 1999, one nurse stated that some provisions were being made for training care workers who provide respite to children, and for reviewing their skills. The Scope of Professional Practice (UKCC, 1992) document states that, in institutional and community settings where health care assistants are part of a team involving nurses, midwives and health visitors, thw must work under the direction and support of those registered practitioners. 142 What value is nursing? The practice o f shifting care to non-nurse care providers points to a fundamental issue: the value o f nurses’ work and nurses’ contribution. The emphasis on the procedural aspect o f nursing work diminishes the many other components o f nurses’ work in the community which, as I noted earlier, are not as readily apparent. This work includes the assessment that provides for early identification and prevention o f other problems, the educative aspects o f child and family care, the planning and coordinating o f care with other professionals and agencies, and the emotional support that develops within a consistent caring relationship between a nurse and the child and family. Within the organisational constraints discussed in Chapter Three, and the pressures toward the provision o f complex care in the community, these vital components of the nurses’ role are being diminished or lost. In addition, the therapeutic ftmction associated with nursing tasks may also be lost as tasks become separated from nurses’ knowledge, skills, and therapeutic relationship One o f the means o f access to the therapeutic function o f nursing, the heart o f the caring role, has always been through its more routine tasks (Ross & Mackenzie, 1996). The focus on the procedural aspects o f nursing is contributing to a reconceptualization o f nursing itself. Participants offered differing views as to whether the tasks are even part o f nursing. For example, one nurse participant said, “Gastrostomies are not a nursing procedure Parents and carers do it at home. So there is no reason it can’t be done by others [aides] in the school ” The fact that families and other carers can and do provide care appears as the rationale for stating it is not nursing work. Simply stated by another participant, “If a parent can do it, there’s no need for a 143 nurse” ! Nursing itself is being reconceptualized, as nursing care is defined out o f nursing altogether. One participant from the voluntary sector expressed an underlying reality which nurses themselves did not address, in stating, “There is no definition o f what’s nursing.” Without a definition or an understanding o f what constitutes nursing, how can the value o f nursing be recognized or understood? This reconceptualization o f nursing appears, therefore, to be a way o f further fragmenting and deconstructing nurses’ work. The relationship between cost and nursing care. A nurse specialist offered a view about what does define nursing. She said, “Gastrostomies are [italics added] a nursing procedure, but they can be taught by a qualified person to lay people. If they didn’t take it on, the child would be cared for in hospital.” A critical element in defining the nature of care is, therefore, the cost o f care. The cost o f institutional care was one o f the underlying motivations for shifting care from hospitals to communities in the first place (Walker, 1993). If nurses’ roles and work can be fragmented, and the components shifted to lower paid workers and families, the costs can be reduced. In shifting nursing work outside the scope o f professional practice to non-nurses, health care is often managed through the lowest cost care provider (Armstrong & Armstrong, 1990; Gough, 1994b). The organisational search for role flexibility, discussed in the theme o f role strain, may also be called a search for multi-skilled workers. Multi-skilling is a strategy to ensure that many workers have a broad range o f skills, but the strategy is often one of de-skilling, where a minimum level o f training is given to non-nurse carers for the completion o f a technical task (Armstrong & Armstrong, 1990). 144 This relationship between money and nursing also recalls another discussion in Chapter Three. In the theme o f role confusion, the policy definition o f health care is care provided by doctors, nurses, and other health professionals. But in the community, what once constituted nurses’ work is seen as social care, the tasks or procedures carried out by assistants, aides and other carers and o f course, families. I f the care can be defined as social care, families and local authorities pay the bills. In essence, the cost o f care appears to be defining what does and does not constitute nursing work in the community and who provides it. Summarv Policies in Scotland have promoted a shift in the location o f care from institutions to the community for children with special health care needs. The themes o f role strain and fragmentation describe pressures on nurses in the community to provide more technical, task-oriented care, and highlight changes in nurses’ roles that are already taking place. The nature o f fragmentation that is occurring threatens the holistic nature o f nursing care. Nurses’ work is being deconstructed as the content o f roles themselves change, and as work is divided among nurses, families and other carers to meet organisational requirements. The challenge facing those who are planning and delivering community services is to avoid a fragmented, task-oriented approach and to involve nurses and families in collaborative approaches to role change. The critical issue underlying the reconceptualization o f nursing that is occurring is that it concerns, not only the fragmentation o f nurses’ roles, but also, ultimately, the erosion o f care itself. There is also a view that the work of families in the care of their sick or disabled children is neither health nor social care but simply family care - part of the patenting role. This view is discussed in C huter Five. 145 The exploration o f themes in Chapters Three and Four have been concerned primarily with the roles o f nurses, and to a lesser degree, with those o f non-nurse carers and families. The emphasis on the roles o f nurses and formal carers in the provision o f services may create a perception that families and children with special health care needs enjoy a vast network o f formal support. Yet despite the range o f services offered, formal care constitutes a relatively small proportion o f the care that goes on in the home. The location o f care in the community is changing the meaning o f care for nurses and families. 146 Chapter Five Meanings o f Care: How Does Community Mean? Introduction The term care has conveyed different meanings in policy and in the experiences o f participants throughout this study Policy, for example. Caring for People (DOH, 1989b), states: “The great bulk of community care is provided by friends, families and neighbours” (p. 4). This statement conveys meanings o f care that are reminiscent o f neighbourliness, fiiendliness and concern for others (Pereira, 1993), as well as a location, the commiuiity, a place where people help one another Care also describes the nature o f nurses’ roles with families, and the work of nurses, families, and other carers Meanings o f care emerge in my research from the experiences o f participants conveyed in the preceding role-related themes o f conflict, confusion, strain, and fragmentation. This chapter draws on those meanings o f care, as well as on those centred in the home with families. These meanings emerge from group discussions and interviews with participants from various sectors o f the community, including carers themselves. The question, “How does ‘conununity’ mean? ”' arises in these contexts. It asks, in what ways does the notion o f community itself convey meanings o f care? For example, during the course o f my research, 1 noticed that community as a location, the place where care for children with special needs is primarily located, gives new meaning to words simply because o f their relationship with community Words such as nursing and family ' The question is adapted from the title of a book by Yanow, D. (1996). How does a policy mean? Washington; Georgetown Universi^ Press. 147 care are taking on new meanings in the community. The question posed by “How?” asks that these new meanings are noticed, and that there is an attempt to understand the way in which new meanings emerge (Yanow, 1993). “How” invites an interpretative paradigm to promote an understanding o f the changes affecting the roles o f nurses and families, and their care in the community. Most families, however constituted, engage in some degree o f health care, including health care for their children. Graham (1984) said that for most o f us it is families that met our health needs in childhood for warmth, shelter and comfort. But as mentioned before, the role o f families in Scotland and their relationship with health care is changing. This change is taking place within the home, in the context o f care in the community, and in a shifting boundary between the roles o f nurses and families. The roles o f nurses and families meet at the interface between formal and informal care. Formal care involves the provision o f services by nurses and others from public, private, and voluntary agencies. Despite the range of services that may be available to families, formal care constitutes only a small proportion of the care that occurs in homes. Increasingly, care in its community location is understood to be informal care, the care provided by the community (Kirk & Glendinning, 1998), usually in the context of the family or marital relationships. It encompasses three key assumptions: that it occurs within the context o f the family where, mainly female relatives ^ take on the most arduous tasks o f caring, that it is provided on an unpaid basis, and that it is based upon feelings such as obligation and love (Kirk & Glendinning, 1998). ^Data from a General Household Survqr in the UK suggests that apart from qwuse caregiving relationships, it is mainly female relatives who take on the majority of care (Kiric and Glendinning, 1998). 148 As families take on more o f the work o f caregiving, there are relatively few options for relief. Respite care is the term used to describe ways in which carers and the cared for person obtain relief from one another or from the tasks o f care that are integral to caring for children with special health needs The discussion in this chapter explores ways in which the location o f care in the community gives new meaning to the roles o f families, and to concepts o f what constitutes family or nursing care. The first theme, reconceptualizing family roles, explores the changing concept o f family roles and family work. The second theme explores the nature o f respite care, which is now understood to be the critical issue in support for families. These two themes together provide a picture o f meanings o f care, and how community means. Reconceptualizing Familv Roles “Some parents change trach tubes, although they prefer a nurse.” The care required by children is described as parenting in western cultures. Families, with reference to those that have children, usually involve the care that is given by someone in a parenting ro le/ But families caring for children with special needs are unique families, often called carers. Their care extends what is normally considered to be parenting (Kirk & Glendinning, 1998) however, it may still be understood to be part o f the parenting role. The roles o f families are being reconceptualized as they take on work at home that was formerly provided by nurses in hospital settings. The ways in which this process is occurring is explored through four dimensions or sub-themes: the parent-child ^ This statement is not intended to overlook the diversi^ of fiunilies associated with culture, class, ethnicity, religion, and other variables. A discussion of divers:^ has not emerged to any degree in my research, and must therefore remain a ttgiic for another study 149 relationship, an image o f care, public policy, and relationships between policy and culture. These dimensions give meanings to family care The Parent-Child Relationship One nurse in a specialist role with children and families reflected on the nature o f family roles in the changing context o f community care She stated: Families are the primary carers This is true in the hospital and community. We ask a lot of parents but they take it on. The children thrive. Parental care, in western culture, is traditionally provided as part o f a parent-child relationship. Many parents are rewarded by the way in which their children respond to care and this interactive process fosters and strengthens the parent-child bond. This is often the case regardless o f the nature o f care requirements. But families o f children with special health care needs in Scotland are providing the tasks and procedures and other dimensions o f care that, until this decade, belonged in the domain o f nursing practice. This change is occurring in the context of a growing emphasis on patient/parent participation (Kirk & Glendinning, 1998) throughout the western world Patient participation was originally promoted as a means o f reducing the adverse eflects o f hospitalization on children (Kirk & Glendinning, 1998), particularly the separation o f the child from the family. A premise underlying patient participation is that the family, like the child, is also a patient or client whose role and involvement in care contributes to positive outcomes. Thus, the concept fosters the idea o f a partnership between health professionals and families that engages families in decision-making and in the performance o f clinical procedures in the hospital environment It also implies a negotiation in the respective roles o f families and nurses for the provision o f clinical care. 150 defined as “arranging some matter by mutual agreement or compromise” (Gallery & Smith, 1991, p. 774). Parent participation in the care o f hospitalized children has evolved, however, to the performance o f nursing procedures (Kirk & Glendinning, 1998) and other specialized care in the home.'* One nurse described the nature o f care that some parents provide in the home for their sick and disabled children; Flushing a Hickman line^ is no longer a nursing procedure in the conununity... Some parents change trach [tracheostomy] tubes, although they prefer a nurse. Mothers will do n/g [naso-gastric] tubes if trained. They prefer a nurse... many parents don’t like to do it because the child gets distressed. The relocation o f nursing care to the home and community is changing the meaning of family care and the way that care is provided and understood. Primarily a parent, usually Mum, provides the care that involves the performance o f nursing procedures. The parent’s preference for a nurse to provide care does not alter the fact that it is parental responsibility, nor does the invasive and sometimes distressing nature o f this care. The care itself may require, therefore, that children experience their parents not only as nurturers, but also in ways that may be hurtful. The negotiation that was implied by the concept o f patient participation in the hospital setting, does not appear to have a place, at least not in the community. As Strauss (cited in Gallery & Smith, 1991) suggests, the usual definitions o f negotiation make no distinction “between negotiation and other modes of attaining desired ends - such as persuasion, education, appeal to authority, or the use o f coercion or threat” (p. 774). '’Some jurisdictions in Scotland have discrete programs called. Hospital care at home. Hickman line provides an access port near the base of the neck to enable administration of fluid and/or medications into a major vein that irâds back into the heart 151 The meanings o f care in the community are leading to a reconceptualization of both families’ roles and nursing itself. The latter theme is further captured here in the statement that “flushing a Hickman line is no longer a nursing procedure in the community.” If nursing care is no longer understood to be nursing in the community, this makes it easier for government and indeed for nurses and families to expect that the work is part o f the role o f families. The dynamic interaction between the roles o f nurses and families thus changes the nature o f caring work for both. Yet what are the social conditions in which this interaction is situated? And if nurses are failing in their negotiations with families, who is negotiating with them? I return to these points in the final chapter. An Image o f Care The stories told by families would provide the most complete understanding o f their caring work, but I did not have the opportunity to interview families for this research. One nurse who works with families and children provided an image o f family care in response to my question about the care o f a child with a gastrostomy: If the tube fell out, the parent might replace it or the district nurse. We have one family where the grandpa does the tube when dad is away, the [dad’s] girlfiiend does the feedings. Each family has a different person to depend on. This image o f care may be seen and understood in several ways. One view speaks to the process o f care, the day-to-day experiences o f the family in caring (Williams, 1993) for a child with special needs. These experiences include the ways in which the family must organise, plan, and coordinate care among both formal and informal supports to ensure that the needs o f the child are met. The image describes diversity in family composition, roles, and responsibilities. It underlines the complexities involving work and other 152 demands, the needs o f other family members who are aging, and loss as family roles and members change. The image also describes the uncertainty in care Uncertainty surrounds the unexpected and unpredictable events that occur in the care o f a child with special health needs. Uncertainty is also the question; “Whom can we depend on this time?” Who is available? Whose role is it? Finally, although there also are many other images, there is one suggestive o f family rights and expectations. What right does the family have to receive support from a nurse, or care by a nurse? What can the family expect in terms o f the frequency, nature and cost o f care? What right does the child have to receive care from one consistent knowledgeable person, whoever that person may be? These are some images o f care which, while provided by one nurse, reflect the responsibilities, complexities, and uncertainties o f care by families, also described by others. Public Policv A function o f public policy is to address the issue o f rights - to give meaning and structure to the roles and responsibilities o f the family versus the roles and obligations of the state with respect to children. Some o f the expectations o f families are outlined in explicit policy statements. For example. Caring for People (1989b) while acknowledging as I noted earlier, that the great bulk o f community care is provided by friends, family and neighbours, also states that “it is right that they should be able to play their part in looking after those close to them” (DOH, 1989b, p. 4). Similarly, The Children (Scotland! Act 1995. the lead legislation on the care o f children in Scotland, states: “Parents should normally be responsible for the upbring o f their children and should share that responsibility” (Social Work Services Group, 1997, p. vii). 153 Within this and other policy statements, however, there are implicit and taken-fbrgranted assumptions that fiunilies will meet the requirements for care, whatever is involved. Brown and Smith (1994) afiBrm this view in stating that the policy rhetoric o f community care hides the labour and sometimes intensive care for family members by defining the specialized medical or nursing tasks as part o f the informal responsibilities o f families. The labour is hidden in the language o f care (Ungerson, 1990) and is assumed simply to be a normal part o f a loving parent-child relationship. The language in policy also conveys other meanings. Policy does not specifically address the role of either men or women. In The Children Act f Scotland! 1995. the term “family, in relation to a child, includes any person who has parental responsibility for a child and any other person with whom the child has been living” (Social Work Services Group, 1997, Volume I, p. 1). By describing the role o f family and person in genderneutral terms (Brown & Smith, 1994), there is a sense that men and women are inter­ changeable in their roles, an implied equality. There is, however, also an implicit assumption that women will be available for unpaid care in the home. The structure o f society is itself gendered, and care is normally understood to be women’s work. Thus there is a consistency between the expectations o f society and those outlined in policy, the expectation being that a loving parent, usually the mother, will do whatever is required to care for her child. The language o f policy also promotes the concept o f choice for families, or women, in their caring role. For example, the Children f Scotland! Act 1995 states that some o f the principles such as “choice and flexibility” used in the care management of vulnerable adults may be helpful in thinking about assessing and coordinating packages o f 154 services for children who are disabled (Social Work Services Group, 1997, Vol. I p.31). The Act also requires that the üunily’s views and preferences regarding their child’s care must be taken into account. But what choices does policy offer for parents or families who are unable for whatever reasons to provide the care for their sick or disabled child? A health visitor described a situation in which a child with a ventilator was coming home from the hospital. The parents didn’t want the child home from the hospital because they felt t h ^ couldn’t manage, so the child was sent to foster care, she said This example illustrates the sometimes ambiguous nature o f policy - the difference between what is stated or implied in policy and the actual outcome. When families are faced with the care of a child with complex needs and care requirements, the real choices appear to be mandated at least in part by fiscal considerations. In other words, institutional care is not an option One nurse who works with adults and children with disabilities stated, “The issue o f moving people with complex needs from institutions is a political issue that needs to be addressed. There are issues o f funding, care in the community, who takes responsibility ” Although these statements were made with specific reference to adults and children who have moved or are moving from institutions, the issue o f funding emerges as a consistent theme throughout this research. In terms o f the roles and responsibilities o f families, the ever present and increasing concern about levels o f public expenditure and responsibility underlie all family policy decisions (Weir, 1994). In this way, cost gives meaning to the notion o f family care in the community, and to the way in which the concept o f family itself is understood. 155 Relationships between Policv and Culture The assumptions contained in policy regarding family roles are linked, not only with cost, but also with socio cultural expectations. A participant from the voluntary sector described these expectations stating, “Unless you are involved with families, you think services are just provided But it’s not automatic The societal expectation is that you are a Mum first.” The nuclear family^ with the woman at home is still presented as the norm to which all women should aspire (Newman, 1995) even though this does not reflect the socio­ economic reality for many families. In Britain most women work, have at least one child, and carry out the majority o f caring and household tasks (Newman, 1995). Yet government policies that address the responsibilities o f parents for care conform to this cultural ideal - that mothers will care for their children whatever the circumstances (Kirk & Glendinning, 1998). The reality o f the family is that it is still gendered and hierarchically structured to the disadvantage o f women (Newman, 1995). Cultural attitudes and societal values also constrain the choices available to women. A participant from a charitable agency stated; Most people care for someone because they want to. But there is a problem with society accepting that some people don’t want to and can say, ‘N o , I don’t want to give care.” ^ Wuest (1993) states that the ideology of familism is the dominating principle of social organisation in Western societies. She adds that the ideology of the nuclear family fosters relationships of domination and subordination, patterns of domestic labour, altruistic caregiving of children and the elderly, and patterns of dependency, all of which serve women poorly (p. 409). These views are confirmed by other writers in the UK, who also describe the implicit assumptions in social policy that women will be available for unpaid care of sick and disabled children and relatives ^row n and Smith, 1994; Finch & Groves, 1983 ; Mohan, 1995; Ungerson, 1990). A review of research in Canada, Britain, and the United States found that at least seventy per cent or more of caregiving is done by women (Armstrong and Armstrong, 1990). 156 Women, in particular, have a socialized reluctance to say, “No” which can be readily exploited. From a socialization perspective, the ways in which women internalize their identity may mean that they often set their priorities in terms o f others (Finch & Groves, 1983), thereby intensifying their own expectations o f themselves as carers. The expectations women place upon themselves were demonstrated in one research study where, for mothers o f children with congenital disabilities, even the act o f asking for help was considered to be an admission o f failure (Twigg & Atkin, 1994). Typically mothers see themselves as competent and able to provide care for their children whatever the requirements. The need to ask for help may challenge self-perception and expectations for one’s own competence. But Anderson and Elfert (1989) suggest it is this very notion o f competence that is part o f the lived experience o f women, experience that is used by the state and by health professionals to maintain women in home as unpaid caregivers Thus, while the notion o f family care is being reconceptualized in the community, the role o f women as unpaid caregivers remains the same. Families, particularly women, as informal and unpaid carers, now have a central role in the provision o f increasingly complex care in the community. The nature of family roles and family care also give new meaning to the concept o f respite. Meanings of Respite “Mums are coming into hospital and they are dead on their feet.” The concept o f respite is understood in different ways among both those who need it and those who are in some way involved in its provision. I had the opportunity to attend a respite special interest group meeting in Scotland, and hear views from both. The issue o f 157 respite also emerged in interviews with nurses and other participants. The contributions through group interviews, along with my individual interviews, provided meanings to and concerns about respite in the context o f care in the community. These meanings and concerns emerge in the following sub-themes: what is respite?, respite in policy, and respite in practice. What is Respite? A participant stated that the words used to describe respite affect the meaning and perception o f services. He said that, for example, the terms holidays or breaks, often used to describe respite, “devalue its importance.” But another participant stated that respite should be “whatever the person needs - a holiday, break, or regular care.” This latter argument focused on the view that people seeking respite should not have to demonstrate their need as a crisis; that respite for carers is a right, and they should feel no apology if what they require is a holiday. These and other definitions and comments reflected the view that, not only is respite a right, but also a critical need. One person, for example, described respite as “an essential break for the carer and person cared for from a routine, and responsibility that would otherwise become intolerable.” Another person described respite as “the difference between coping and not coping, surviving and not surviving; a lifeline.” These views reflect the need for respite, identified primarily by or on behalf o f carers. The issue of need raises the question. What counts as a service for carers? Carers are not really clients; they may be helped as a by-product o f services that operate to increase the independence of the cared-for person (Twigg & Atkin, 1994). In 158 other words, the nature o f care that comes to carers is intended to help maintain the cared for person in the community through sustaining unpaid care Respite, formally provided, is arranged by Social Services as part o f a package o f care (Twigg & Atkin, 1994) intended to support the relative independence o f the cared for person. Each package differs, and is arranged case by case. In some situations, the carer receives respite through provisions made for the child to go temporarily to another family’s home, or to a respite facility. Respite may also mean that someone is paid to come into the home. Formal respite care may be given by anyone who is paid to provide it. One participant stated, “The main requirement is to be a caring person.” A nurse participant explained that the Social Work department, which advertises for carers, selects formal carers, often someone with nurse auxiliary training. Nurses are also sometimes available to families as formal respite providers. As one administrator said, “Where there is a need for a nurse to provide respite, the decision is made on a case by case basis.” A nurse participant said, “Sometimes the carer is a nurse and sometimes not, every case is decided individually. There is a need for guidelines.” But, she added, “Sometimes there is a need for a nurse to give parents a good sleep.” So what do respite carers actually do for families? Carers may provide personal care, cleaning, help with nursing tasks, an opportunity for an occasional good sleep. It is unclear, however, on which occasions a good sleep is required, and why sometimes nurses are chosen to provide it Twigg and Atkin (1994) suggest that there is a negotiated element that lies between carers and service provision. But this negotiation occurs in a context o f power, in which service providers not only have control over the nature and 159 source o f the allocations, but also to some degree over the definitions o f the situation (Twigg & Atkin, 1994, p. 29). Thus, in one situation a worker may perceive a need for a nurse, while a similar situation may be perceived or treated dififerently. Despite the varied nature o f formal respite care, it is generally recognized in Scotland that the vast majority o f respite is provided through informal carers A nurse stated that many carers are members o f the child’s family. “It’s hard introducing people into a child’s home; it’s not easy for the family,” she said. The stress o f incorporating a stranger into one’s home to care for the child may be a reason why formal respite services, even when available, are sometimes not utilized. In some situations nurses who know the child from the hospital setting will offer their services to the family for respite on a volunteer basis. One o f the documented benefits o f informal carers is the provision o f emotional support which may not be available through formal respite services (Storey, 1993). The “natural carer” is thus supported by the “natural community” (Brown & Smith, 1994, p. 44). The provision o f respite care is still evolving in Scotland. More research with families is required to determine the type o f service provision that is most helpful to them. As the authors o f a study o f respite care services in Scotland indicated; One suspects that in the case o f . carers, there is very little recognition o f their needs and interests, and they spend much o f their time as shadowy figures in the background. (Lindsay et a l , 1993, p. 18) The current approach to packages o f care largely consigns the work o f caring to families and their informal care, meanwhile bolstering it, where necessary, by packages 160 paid for and rationed by public agencies (Brown & Smith, 1994). Thus both government policy and agencies are central to the provision o f respite care Respite in Policv It is now widely recognized in Scotland and throughout the UK that carers save the government about thirty four billion pounds per year in unpaid informal care In recognizing the value o f this unpaid care, the government gives policy recognition to the importance o f relief for carers, provided as formal respite care The Children (Scotland! Act 1995. for example, states; “ ...respite should be provided as part o f a planned package o f care to support the family,” and that a flexible community based respite service is “likely to be cost efiective when compared with the cost o f family stress and breakdown” (Social Work Services Group, 1997, vol. I, p. 43). Similarly, Caring for People states that many carers need help to manage what can become a heavy burden and that the provision o f care is one source o f help (DOH, 1989b, p. 9). The government has also recognized the needs and rights o f carers through the Carers (Recognition and Services! Act 1995 (HMSG, 1995) which gives carers the right to request that local authority make an assessment o f their needs, separate from those of the cared for person. There is, however, a gap between the recognition o f need and the provision of funds and services. As one agency participant stated, “The Act gives carers legal recognition, but there are no resources to match.” This apparent contradiction is consistent with Yanow’s (1996) view, that policy has layers o f meaning, including the cognitively known, rational, and literal elements, and the symbolic elements that carry value and feelings. The analysis offered by the agency participant reflects on the symbolic nature o f the Carers Act, which reflects the valuing o f carers in the absence o f any 161 meaningful implementation. Day-to-day rationing practices contradict policy statements that appear to value carers Respite in Practice Designated as social care, the provision o f respite Alls under the responsibility o f local authorities. Social workers have an obligation to assess the needs o f carers who request an assessment, but have no obligation to meet the need Someone has to pay for respite, and someone has to provide it, and the fimds for both are lacking. In terms o f respite care for children in Grampian, there are no designated resources The availability o f respite care across Scotland varies depending on the local authority and Amding arrangements involved. One administrator said, “There is very little respite care for children in Grampian. We are talking with local authorities about this.” The lack o f resources for respite is demonstrated in the concerns expressed by participants. One participant who seeks alternate family carers^ to provide respite for children with special needs said she had thirty-three children on a waiting list, among them, a child with complex needs who has been on the waiting list for five years. A participant in the voluntary sector, in referring to carers for both adults and children, stated, “Families are afi’aid to talk about what they have in case they lose it.” And carers at a special interest group meeting said that “unless you prove you are in crisis you won’t get respite”. These statements raise questions about the ways in which resources are allocated. ^ Share the care is an example of a respite program in Scotland whereby alternate families provide temporary care for children in their homes. 162 Lipsky (1980) states that street level bureaucrats, such as social workers and nurses, actively interpret agency rules and regulations which are understood as constituting policy Thus, policy is implemented through the workers’ day to day practice In this way, the state maintains the benevolent stance expressed in policy, while others do the mediating work of rationing and setting priorities for the allocation o f limited resources (Hugman, 1991). Services may be rationed by varying the total amount available, or by varying the distributions o f a fixed amount (Lipsky, 1980, p. 87). My research suggests that services may be rationed to those who are in crisis, to those who have the information, and to certain designated groups o f clients, a finding supported by Hugman (1991). Within this sub-theme, respite in practice, I discuss each o f these factors. Being in crisis A nurse in Scotland described the process by which families may obtain respite: They [families] obtain respite through the social worker, but we instill guilt if they ask too often. The norm is about two days per month. They d’nay like asking....We would like to see families offered regular respite care. They [the children] used to be small people. Now they are growing into adults and they are killing their parents. We hope they are coping, we turn a blind eye. Mums are coming in to hospital and they are dead on their feet. The nurse’s experience with families conveys a desperate image o f families in crisis. So why do families wait, and what is the role o f professionals in the process? Hugman (1991) asserts that one aspect of the caring professions is the exercise o f power to create meaning - meanings about the good or bad client, and about the opportunity to practise professional skills in a way that is valued professionally. Guilt has meaning for families, and particularly for women who are seeking help to care for their children. The process o f 163 instilling guilt demonstrates that guilt itself can be a useful tool for rationing in a resourceconstrained environment. The meaning that guilt holds for families needing help, as described here, is consistent with research findings on respite utilization patterns. Research cited by Storey (1993) states that parents’ hesitancy to use respite is attributed to guilt, worry, fear o f being perceived as unloving o r unable to cope, denial o f their circumstances and concern about the possible inadequacy o f respite situations and providers. Some families are reluctant to seek respite at all, even when in crisis. A nurse who works with children described a family that tried to manage on their own in caring for a young child; Several months later [after discharge]...[the parent] disconnected the ventilator, and said, “Enough is enough.” The child could have died but didn’t We should never have let that happen. Families can’t do it on their ow n.. .its proved in Scotland, unless parents have respite, they can’t do it. This story provides a sad but thoughtful contradiction, parents can’t do it on their own, but they are doing it. Despite this nurse’s recognition o f the need for respite, there were dififering opinions among nurses about whether some families actually want or need respite. One nurse stated that mral families tend to rely on their extended family more, but another nurse said there was an urgent need for respite in rural areas. One manager stated that many parents don’t want respite, however, families may not know what is available, or as I noted earlier, whether they deserve respite. The need for information. The perception that parents don’t want respite may relate, at least in part, to the information that is available to them, or the way in which it is provided. Participants fi-om 164 the voluntary sector said that many families lack iiiformation about the availability of services, and are even afraid to talk with one another As one participant from the voluntary agency said, "Families are afraid to talk about what they have in case they lose it." The rationing processes, which may be deliberately obscure, can leave clients fearful and uncertain o f whether they deserve help, or how long they can hang on to it. Another barrier, according to one research participant, is that many social workers and health professionals are not aware o f respite services. Another participant said that Health doesn’t see respite as their responsibility unless there are specific health procedures, and then people should “go to a health place” for it. Some people do turn to the hospital for the provision o f respite. A nurse said that “although we aren’t supposed to, there’s an open door for children with special needs ” It is clear that giving or withholding o f information about funds and services is another way that agencies ration resources (Lipsky, 1980), and also that some families have better access to information sources. In addition, some agency workers are more willing than others to seek and to provide information, thereby disregarding their role as rationing agents. Belonging to the right group. Resources may be rationed not only to people in crisis, or those who have sufficient information to expect it, but also they may be held back and rationed to special priority groups. One person from a voluntary agency said that each person’s need is a priority, but she also added that the client group most in need o f respite care are “parent carers, parents o f children with disabilities ” The parents o f children with disabilities are quite isolated, and if the children go to school, they are picked up, so the parents don’t get 165 a chance to meet others, she said. She added that there are better services for people when there are specific diseases and support groups for them. Children with learning disabilities are among the groups who receive greater support and service provision than other children’s groups. In Aberdeen, for example, families whose children have learning disabilities, a sub-group o f children with special needs, can access an average one weekend per month o f respite through Archway, a charitable organisation. The services are not available to children with physical disabilities despite the fact that a learning disability may be the only variable in care requirements between the two groups. A limited number o f other residential respite facilities in and around Grampian are also available primarily to children with learning disabilities. When I asked why there was a distinction between people with and without learning disabilities, one participant said, “There’s a cheque in hand for people coming out o f institutions.” This statement reflects the priority fimding given to those with learning disabilities, and others designated mentally disabled, most of whom were until recently, placed in institutions. The participant expressed a concern for all the others with special needs living in the community for whom little is available. This disparity is confirmed in a study (Lindsay et al., 1993) in Scotland that says developments have tended to be for children who have learning disabilities. For those children whose disabilities are physical only, or who have other problems, there are few respite services available, although the pattern o f provision does vary around the country (Lindsay et al., p. 1993). Inequities between families appear to hinge, in part, on the way needs are perceived. Children with learning disabilities whose families require respite fall under the definition o f social care, whereas children whose needs are perceived as physical, would 166 likely fall under the responsibility o f health. As discussed in Chapter Three, the way in which health and social care are understood creates a division that produces inequities for children and their families. Lipsky (1980) addressed the issue o f inequities in services stating that the enactment o f policy through government agencies is based on the “myth o f altruism” (p .71), in other words, the belief that the services benefit clients. Lipsky stated that the assertion that agencies provide fair benefits and treatment is usually unexamined, and provides a means for structuring a range o f further assumptions about public policy. Summarv With the recent shift in the location o f care to the community, the roles o f nurses and families are undergoing rapid change in the care of children with special health needs. This last findings chapter demonstrates the power o f the state in shaping nurse and family roles, and illuminates relationships between gender, costs, and care. The themes, reconceptualizing family roles, and meanings o f respite, demonstrate ways in which policies and practices concerning care in the community are changing meanings o f care for and by families. At the same time as families are faced with the responsibility for care, they are also struggling to obtain the care and support they need in order to manage. Due to the explicit nature o f public policies pertaining to families, these gaps between policy intention and implementation are relatively easy to discern. Policies such as the Carers Act and The Children f Scotland) Act 1995. articulate the needs o f children and families, acknowledge the burden placed upon parents, and outline plans for the provision o f services and resources. They fail, however, in the delivery o f vital elements o f nursing support to families, and in the fimding and provision o f respite services to assist 167 mainly women who are being reconceptualized as nurses. Power, gender and the cost o f care underlie the nature o f care in the context o f the community, and thereby provide insights to how community means In the next and concluding chapter I discuss and summarize the research findings, which reveal, in essence, the erosion o f care to families. 168 Chapter Six Relationships between Policy and Practice: The Erosion o f Care Introduction My study began with an opportunity to gain knowledge in Scotland about the roles o f nurses with families and children with special health care needs in the community. My intent was to gain an understanding o f their roles and provision o f services within the social policy domain in Scotland, an interest that arose from my own experiences and concerns. This interest and concern initiated my studies in the field o f policy. The research has been, therefore, both a personal and professional journey toward deeper understanding, which has led to new questions and has also provided unexpected insights. In exploring relationships between policy and nurses’ roles, I have also gained knowledge that has illuminated relationships between policy, nurses and 6milies, and has provided new ways o f understanding policy and role itself. Policy and roles are socially constructed and context bound. Both spring from the values embedded in culture and the way in which power is organised and realized through policy-making processes. Social and cultural values, expressed through the power o f the state and interest groups, also shape policy and roles in public institutions. Nursing’s traditional focus on the micro level o f care and on the professional struggle for autonomy and recognition, has impeded nurses’ understanding o f power and policy, and o f the nature o f changes occurring in nurse and family roles in the community. In my research, feminist and critical social theories provide explanatory and interpretive approaches that illuminate these changes through drawing attention to the relations o f power that shape both policy and roles. 169 In the nursing literature, the language used to describe the terms policy and roles conceals any notion o f a relationship between them, and the neutrality o f the terms masks other meanings. As Alasuutari (1995) points out, in the study o f human experience, reality and social life are always essentially mediated through meanings Meanings concerning policy, nurses’ and families’ roles, and the relationships between them emerged in my research in the role-related themes o f conflict, confusion, strain, fi-agmentation and reconceptualization. These meanings, discussed in this chapter, reflect the erosion c f nursing care to children and families in Scotland. In this chapter I discuss, summarize and conclude the findings, as well as present their significance and their implications for education, policy, research, and nursing practice I begin with a descriptive summary o f nurses’ roles with families and children in the community. Discussion and Summarv Nurses’ Roles with Families and Children who have Special Health Care Needs It is evident fi-om my research in Scotland that, apart fi*om a few exceptions that I will discuss, there is no single nurse role in the community involved in service provision to families and children with special health care needs in the community. Children with chronic illnesses and disabilities who, until recently were cared for by nurses in the hospital or institutional environment, are now cared for primarily at home by their families. Overall, the picture o f service provision is marked by change in both nurse and family roles. There are, however, a variety and growing number o f differing nurse roles in the community involved in the care o f families and children with special health needs. The nature and extent o f involvement depends on the role. In the Grampian region o f 170 Scotland, there are a relatively small number o f specialist health visitors and other specialist nurse roles concerned almost exclusively with children who have special health care needs. Nurses in these roles provide educative, liaison, planning, and supportive functions to both nurses and families, through services that may bridge hospital and community. Some o f the nurses also provide direct care, education, and support related to specific diseases such as cystic fibrosis, or specific care related to such areas as enteral nutrition. There is also a small but growing involvement among generic nurses, mainly health visitors, district nurses, and other nurses in the community with families and children who have special health care needs. While meeting their primary role functions with the general population o f children, families, or elderly, the nurses are also taking on specific care or procedures, such as changing a gastrostomy tube, with children who have special needs. Nurses from the hospital settings may also have varying degrees of involvement with a child’s care-specific requirement in situations where families, carers or nurses in the community cannot provide the care. Increasingly, care for families and children in the community has become family care with families supported, to the extent support is available, by nurses and other carers. This summary provides an overview o f nurses’ roles with families and children with special health care needs. At the descriptive level, however, it does not fully reflect the experiences o f nurses and families engaged in the care o f children with special health care needs in Scotland. It is my intent and hope that the themes and issues that I now summarize, more accurately reflect those experiences. 171 The Organisation o f Care My exploration o f policy and roles introduced new relationships; the relationships o f power between the state, organisations, professional groups, nurses, and families. This view o f the centrality o f power is consistent with Hugman (1991) who suggests that the power o f the state is embedded in policy and is exercised through the mediating power o f professions, and 1 would add organisations The themes of role conflict and confusion describe and illuminate the role o f power in these relationships. Role conflict Despite increases in nursing theory, knowledge, and skill coupled with growth in the complexity and diversity o f nurses’ roles, hierarchies have been and continue to be the predominant organisational structure in which nurses’ roles and work are situated. This relationship between hierarchies and nursing is generally accepted and is, to a large extent, taken for granted. The hierarchy appears natural because it is a reproduction o f social relationships throughout society (Hugman, 1991). Hierarchies constrain nurses’ roles and their ability to shape their work. The nature and impact o f these constraints emerged in the research in the theme o f role conflict. Nurse participants expressed concern about the degree o f control that is now being exerted over their work within the GP practice. This control is constraining opportunities for health visitors to carry out their educative and health promotion work with children and families and individuals across the lifespan. Participants talked about how these constraints are also having negative effects on the health o f mothers and infants who previously would have received regular and more frequent follow up in home 172 settings. Nurses are experiencing pressures to do more group and clinic work that also reflect priorities of the GP practice. The reforms did not explicitly devalue nurses’ contributions or subordinate nurses to the GP practice. However, the failure o f policy makers to be explicit about the role o f nurses, or to anticipate potential deleterious impacts on nurses and families, reflects a systematic devaluing o f nurses and other carers, primarily women, and their contributions o f caring and unpaid work. It is unclear from my analyses whether policy makers, while not explicit about the role of nurses, intended nevertheless that nurses adapt their role functions to the priorities and demands of the GP practice. Policy decisions are made in the context o f political, economic, and cultural realities (Gough, 1997), which involve the state, organisations, and professional groups, shaped by varying degrees by relations o f power. Within this context, doctors in Britain have been able to fully participate in the determination o f policy outcomes (Hill, 1980), in contrast to nurses who lack the power to shape health services and patient care. The value o f nurses’ roles and contributions on behalf o f families has been overlooked or misunderstood both in policies and hierarchical organisations. Role confusion. Nurses described confusion as another factor impeding their role contribution. To a large degree, role confusion emerges in the experiences of participants as a product o f organisational confusion, which is itself reflective o f the policy process and the nature o f organisations and professional groups. The community care reforms created a conceptual barrier between health and social care, by emphasizing their differences rather than recognizing their similarities, and 173 they deepened barriers already existing between the organisations and professional groups responsible for the delivery o f health and social care Role and organisational confusion thus reflect the gaps between policy formulation and policy implementation. On the one hand, the reforms mandated a requirement for joint working between Health and Social Services and their respective employees But on the other hand, they actually helped to strengthen the traditional Health and Social Services divide Nurses described the impacts o f the divide, which is creating barriers in their efforts to access services and resources such as respite and medical equipment on behalf o f children and families. Social workers, who have the lead role in conducting assessments for community services provision, appear at times to be mediating not only client services but also nurses’ work. Whether or not this is intended, it appears to have enhanced a struggle between nurses and social workers for professional control o f nurses’ work. As Hugman (1991) asserts, relationships between caring professions including those between nursing and social work, also constitute a form o f hierarchy. The lack o f shared power and authority in making decisions about clients and resources contradicts the notion o f collaboration explicitly stated in the community care reforms. Confusion also appears to arise from differences in organisational aims and priorities. This finding is confirmed by Lipsky (1980), who says that there is a fundamental tension in service organisations between individual client treatment versus efficient agency performances that may impede collaboration. This tension creates ambiguity in the roles o f workers and in organisational direction. A lack o f clarity in roles and responsibilities may also be an attempt on the part o f organisations to obscure responsibility. Thus, what appears to be confusion may be attributed, at least in part, to 174 the struggle for resources. This struggle, played out as a struggle for power, often leaves families without either resources or power The themes o f role conflict and confusion thus reflect the impacts o f policies on nurses and families, expressed through organisations. The impacts, whether intended or unintended, constrain and devalue nurses’ work. The nature o f these constraints on nurses’ roles and work, which emerged in the experiences o f participants, is confirmed by Baines (1991) who says that the large bureaucratic organisations in which nurses are traditionally employed act as a formidable barrier in nursing; Women as direct service professionals in these organisations have had limited autonomy, control over their work, and influence in policy and resource allocation. Hierarchical divisions...all reflect differences in power, esteem, and autonomy. Dichotomies o f this nature ensure rigid role definitions and organisational structures that fail to uncover the complexities and solutions involved in a collective responsibility for caring, (p 68) The nature o f organisations calls attention to the issue o f gender. Gender did not emerge as an explicit issue with my research participants; in other words, they did not name it. The issue of gender was, nevertheless, implicit in discussions concerning the loss of autonomy, and the changing nature o f nurses’ roles, particularly as they described their work with doctors. As Witz (1994) points out, gender divisions are pivotal in understanding roles and relationships between doctors and nurses and the systemic devaluing of nurses’ caring role. The Location o f Care My discussion shifts from the organisation o f care to its location in the community. Role strain and role fragmentation describe the effects o f policies, which. 175 while they may not be explicitly intended for nurses or Amilies, are having consequences for both. Role strain. Health visitors and other nurses are taking on tasks more traditional to the hospital setting in response to deinstitutionalization and the increased complexity o f care in the community. Nurses’ work is becoming more focused on tasks, and the holistic and preventive nature o f work is giving way to the pressures for more visible and complex technical care. The demands for increased and changing role performance in the face o f technological changes, in addition to those already occurring within the GP practice, constitute sources o f role strain. Many nurses, along with other participants, expressed feeling overwhelmed by the changes and repeated changes that have been occurring. Camall (1990) confirms this view o f role strain in stating that it can be caused by not being involved in decisions, having inadequate managerial support, having to cope with technological or other changes, and having to maintain standards of performance even under difBcult circumstances. Role strain thus reflects the responsibilities o f employer organisations, and it is within those settings that nurses and others must receive support for change. Role fi~agmentation. To a large extent, nurses have always coped with the pressures o f change and the need to adapt to new role requirements. Within the context o f the current pressures for care in the community in Scotland, however, nurses’ roles are not only being strained, but also deconstructed as their work becomes increasingly fi-agmented between families and the statutory, private, and voluntary sectors. Families are now the primary carers for 176 children with special health needs, even where nursing care is concerned. Respite care and technological and other supports are being divided among health visitors, district nurses, private nurses, specialists in the hospital and community, and lower cost formal carers. These divisions constitute an erosion o f nursing care to families. The fragmentation o f nurses’ roles and work can best be understood as an organisational strategy to promote a cost-saving division o f labour. Part o f the strategy is the flattening o f roles with the expectation that most types o f work can be done equally well by any member o f a team, a process that Ovretveit (1993) calls skill dilution. Beyond a certain point, however, skill dilution becomes de-skilling, a situation in which the profession-specific work for which individuals were hired in the first place becomes so small that it is lost (Ovretveit, 1993). De-skilling represents a failure on the part o f policy makers, nursing leaders, other health professionals, and at times nurses themselves, either to understand or defend the nature o f nurses’ work. While Benner’s (1984) w ork was among the first to highlight expert practice in the hospital setting, similar efforts are needed in community nursing practice to demonstrate the value o f community nurses’ knowledge, skills, and contributions to famUies. As Zerwekh (1991) asserts, expert practice in the community remains shrouded in vague generalizations because it is superficially documented, inadequately fijnded, and lacks descriptive models (p. 213). Leipert (1992) states that the value of conununity health nursing has implications for the roles o f community nurses, and a decline in practice is due, at least in part, to a lack o f clarity about its value. Nursing both as a profession and practice, rather than guiding and participating in planned role change, is itself being reconceptualized within the context o f the role-related 177 changes taking place in the community. Nurses and others outside the profession who work with families express differing views o f what now constitutes nursing in the community. While many o f the nurses in the research recognized the impacts o f policies on their roles, most felt unable to control the changes or their impacts on families. Some nurses also felt that the changes benefited health care, in allowing more time for GPs to carry out their clinical work. In speaking with nurses concerning the relationship between policy and their roles, my approach was to suspend an assumption that the relationship was unilateral. I invited nurses to describe how they perceived their own ability to influence policy. Apart fi’om opportunities to influence nursing or organisational policies, nurses perceived their roles separate fi’om the policy domain. A nurse summarized a predominant view o f nurses’ ability to influence policy in stating, “It goes on behind closed doors”. This view conveys the notion o f power embedded in the policy process, and the exclusion o f nurses from that process. Meanings o f Care: Reconceptualizing Familv Roles and Respite Care The notion o f care in the community gives new meanings to family care, to respite, and to nursing itself. Family roles are being reconceptualized through the relationships between care and community. Policies have an explicit role in defining the centrality of families in the care o f their children and the services available to them. A review of policies and practices, however, demonstrates contradictions between what is stated in policy and how policy is implemented. For example, although families and other carers can request an assessment o f their needs as carers, there are no resources to guarantee their needs can be met. Similarly, the principles o f choice and flexibility expressed in 178 policies concerning the provision o f respite and other services have little meaning when respite funding and resources are limited or inaccessible. Rationing practices thus contradict the principles and values expressed in policy. There may be no explicit intention in policy to promote the overwhelming changes that have occurred and are continuing to occur in the shifting boundary between nurses and families. Nevertheless, the boundary between nurses’ and family roles has shifted more dramatically than the boundary between nurses and any other carers (Kirk & Glendinning, 1998) in the community. Parents are taking on the daily and often complex and technical care formerly provided by nurses in hospital settings. Although these changes reflect role interactions between nurses and families, my research indicates that these changes have not been sought by o r negotiated between nurses or families. While some parrats may welcome the opportunity to provide that care, the research demonstrates the need for available and consistent planned respite and other support services to assist them in that role. The research also suggests that, while the shift from nursing roles to family care has not been explicitly outlined in policy, the changes are nevertheless intended, non-negotiable, and underlined by gender There is a commonality in nurses’ and families’ work that is based on gender. The work o f nurses and family carers, both o f whom are predominantly women, is caring work, and in terms o f the way this work is perceived, it is also gendered work. The construction o f gender is not simply a general pattern o f male bias that leads to the devaluation of women’s work in society, but it is also the constitution o f an economy that relies on a universalized category o f labour (Calhoun, 1995, p. 167). This category is not really labour, however, because it is simply caring work. The very lowest cost care 179 provider is thus the woman (Armstrong & Armstrong, 1996) who does nursing work for no pay in the home. Conclusion In Chapter One, I introduced a concept o f the relationship between policy, nurses, and families in which policy and nurses act as agents for families. This view was not confirmed in my research, which reveals policy as the main agent acting on, and at times in opposition to, nurses and families rather than supporting their roles and potential. Nurses themselves may fail to recognize ways in which policies, and the organisational practices through which they are expressed, are detrimental to their roles and work with families. My research findings reveal relationships between policy and nurses’ roles that demonstrate an erosion o f roles and an erosion o f care for children and families in Scotland. Nurses’ roles in primary health care and within the context o f the GP practice are changing in ways over which nurses appear to have little control. The holistic nature o f nursing care is in danger o f being lost, and with it the knowledge, and educative, planning, preventive, supportive, and coordinating functions that are vital to the health and well-being of children and families. The experiences o f nurses, families and other carers involved in the care o f children with special health needs in the community are still relatively recent in Scotland. Before the NHS and Communitv Care Act 1990 (DOH, 1990), children with special health care needs were cared for mainly in secondary care. In the context o f continuing, rapid and unpredictable change, therefore, it is unclear how extensive the expectations for care by families will be, or what the impacts may ultimately be on their health and well-being. Similarly, it is unclear how far the erosion o f nurses’ roles will extend, as long as the 180 organisational practices to reduce or control costs also constrain, redefine, and fi-agment nurses’ work. A deconstruction o f the language and meanings in policies related to community care reveals three issues - power, economics, and gender - that collectively are contributing to a devaluing and deconstruction o f nurses’ and families’ roles. As Wuest (1996) asserts, the caring role is thus socially constructed and reconstructed within a context o f social and economic relations in both the home and workplace. Power, economics and gender emerge as major forces in shaping roles and the relationship between policy and nursing practice. Nurses’ roles and the relationship between nurses’ and families are not, as role theory suggests, merely assigned by or negotiated within a cultural context. My research locates roles within a context in which some roles and groups have had, and continue to have higher status and influence in organisations, policies and decision-making. Roles are also situated within and shaped by a context that includes the dominant values, ideologies, and relations o f power fi’om which policies derive (see Diagram, Appendix E). The way in which the state and public institutions are organised, structured, and financed ultimately shape nursing work and the relationship between nurses and families. Similarly, the way in which family and its public function o f caring for the young are defined, affects the availability o f resources to families (Weir, 1994). Nursing has failed to critically examine the gendered nature of roles, and the context that shapes and changes them. With a defining interest in the client and in the role relationship between nurses and clients, nursing has taken for granted the roles and role concepts, such as socialization, which incorporate gender biases that further constrain 181 nurses and other women. Nursing also promotes negotiation with families, and with others who collaborate with nurses in the planning and provision o f care, but it is only beginning to critically examine the concepts o f rule negotiation and patient participation and their implications and meanings for families. There is little evidence in my research o f the negotiated aspects o f roles suggested in the nursing literature and described in some interpretations o f role theory For example, negotiations between role partners, whether nurses and families, nurses and doctors, nurses and social workers, do not appear to figure prominently in shaping roles. Twigg and Atkin (1994) suggest that where negotiation does occur between nurses, other professionals and clients, it means teaching clients the appropriate responses (p. 29). Similarly, negotiations may occur between nurses and doctors, or other professional groups, however. Gallery and Smith (1991) state that the negotiations can be cooperative, conflictual or coercive. Role concepts derived fi'om role theory have offered some usefiil insights into the nature o f roles: the importance o f the individual’s role conception, the concept o f role validation by the reference group, and the expectations o f role partners in shaping roles. Although role theory locates the origin o f professional role expectations with peers, clients, and the public, the expectations o f nurses and families in this research do not appear to account for the role developments and changes that are occurring. As a matter o f interest, Johnson (1993) suggests that there may be merit in retaining the concept o f role for certain structural analyses but argues that there is a need to give careful attention to each role’s implication for power (p. 128). 182 Nurses are often viewed by others, or view themselves, as responsible for the lack o f power in their role. For example, the writers in an American nursing text suggest that the biggest hindrance to empowerment is the individual nurse, and her tendency to be passive and dependent (Strader & Decker, 1995). In a similar vein, a UK based article states that women who are suffering the effects o f discrimination and oppression within the family and workplace, are encouraged to turn to therapy rather than to action or resistance (Brown & Smith, 1994). Yet even this latter view, while implicitly acknowledging the social context for powerlessness, nevertheless places responsibility for change on women themselves. As Edelman (1988) suggests, proposals to solve chronic social dilemmas by changing the attitudes and behaviour o f individuals are expressions of the same power structure that created the problems itself (p. 27). I would argue for macro perspectives on role, gender, and power. Dunn, Almquist, and Chafetz (1993) suggest that, while macro perspectives do not deny that individual characteristics and behaviours play a role in the creation and maintenance o f gender inequality, macro level variables such as communities, labour markets, states, and nations are paramount (p. 69). This understanding has the potential to promote empowerment. Nurses can become agents for and partners with families in practice and in the policy domain. There is a need, however, for nurses to reconceptualize both nursing and the nursing role to promote a new understanding of role and its relationship with policy. The construction o f a new paradigm for nursing does not require that nurses discard the micro perspective, that is, their interest in the nurse-client relationship. Nurses can contribute to a new paradigm that alters oppressive social circumstances for nurses and 183 families by defending and expanding their knowledge in practice, policy, and research, and by challenging the power relations that seek to devalue both nurse and family roles Implications o f the Research Nursing Education Nursing education has a vital role in facilitating change in the historical trends that continue to constrain nurses’ roles. The emergence o f a new paradigm for nursing is dependent upon the expansion o f the knowledge on which nurses base their practice (Gough, Maslin-Prothero, and Masterson, 1994). There are significant efforts underway in some jurisdictions in the UK to facilitate an integration o f socioeconomic and political consciousness in nursing curriculum (Isherwood, 1995). Sweeping changes introduced by the Project 2000 (1986) initiative that heralded a new approach to the initial preparation o f nurses in the UK, provide a base for the development o f a broader perspective (Gough et al., 1994). The Project 2000 document also emphasizes the need to produce flexible practitioners who have the confidence to cope with uncertainty and change (UKCC, 1986). One o f the approaches increasingly offered is education that offers a growing emphasis on reflective practice. Reflection assists individuals to awareness that can reveal sources o f oppression (Gough et al., 1994). This awareness assists nurses in promoting change in their own environments, as well as those for families and communities. Policy and Practice The research raises serious concerns about the erosion o f care and the impacts on the health o f children and families. These concerns have implications for policy and practice. In the practice arena, there must be a concerted effort by regional and local 184 health authorities and medical and nursing leaders to understand and address the concerns o f research participants, and others who may also share their concerns Some initiatives have already been taken, for example, the effort in Grampian to assess the need for a coordinated model o f service provision for children and families. There have also been efforts undertaken by a Respite Special Interest group in Grampian, as well as by national agencies in Scotland and the UK, to lobby for improvements and changes in the provision o f respite care. These initiatives must be supported and further developed by health boards and local authorities. At the level o f public policy, the current trends in Scotland and the UK have led to a GP-centric model o f primary health care that has limited the realization o f the vision of primary health care (Witz, 1994), and are constraining the roles o f nurses. There is a need, therefore, for a return to the original vision o f primary health care advanced by the World Health Organisation and by Scottish Office documents, such as Working Together for a Healthier Scotland ( 1998). This vision o f primary health care includes an essential role for community health nurses in promoting health and preventive health strategies for individuals and communities. The establishment o f Local Health Care Co-operatives in Scotland provides an opportunity for all the members o f the primary health care team to define present and fiiture goals to address the needs o f children and families. Regional health authorities have a vital role to play in seeking the involvement o f nurses and others on the team whose contribution in Scotland, unlike England, is voluntary There are also signs in Scotland of the will to achieve a more egalitarian model for health care planning and health care. In 1998, for example, a conference o f doctors and nurses in Scotland voted overwhelmingly 185 against doctors dominating the Local Health Care Co-operatives^ (Agnew, 1998). In addition, there is increasing recognition in Scotland and throughout the UK, o f growing inequalities in health arising from people’s circumstances, a recognition which must convert to action. Research Meanwhile, there is a pressing need for research to determine the impact on children and families related to the complex care that is increasingly becoming part o f families’ roles in Scotland. While it has been demonstrated^ that parents are able to perform clinical procedures (Kirk & Glendinning, 1998), their perceptions and experiences and those o f their children have not been well explored. There is also a need for evaluation research sponsored by health and local authorities that will guide the enforcement o f safe practice standards among the agencies and variously qualified staff and other carers involved in the provision o f care for children in community settings. Concerns regarding disparities in standards and/or their enforcement for the care o f children in private care homes and licensed facilities were brought to my attention, but I was unable to fully explore the concerns in order to address them in this research. Research also has a key role in engaging nurses and families in change. Feminist participatory research enlists the participation o f groups and communities in social change, while feminist advocacy research relies on groups - nurses, families, and others - to identify research issues in order to promote policy change (Gottfried, 1996). ' LHCCs are termed primary care groups or PCGs in England. ^ In my role training and supporting fiunilies, I have seen competent care by parents and informal carers demonstrated. 186 My perception from meeting and talking with nurses, social workers, carers, and others in the statutory and voluntary sectors in Scotland, is that each group has made and is making an enormous contribution to strengthening services for families. These contributions will continue to emerge through a collective will to identify new directions for policy, education, research, and practice that value the roles o f nurses, and engage and support families. Significance In conclusion, the significance o f my research is the contribution it makes to the recognition o f the profound changes affecting nurses’ and families’ roles in Scotland, and to an understanding o f the context in which these changes are occurring. These changes are in progress, and point to the need for further research and action to minimize the impacts. Ultimately, the significance o f changes affecting nurses’ roles is the impact on and erosion of care to children and families. My research also challenges nurses to a critical analysis o f role theory, which has provided an accepted view through which nurses understand and take for granted nurses’ roles. In illuminating relationships between policy and nurses’ roles, I add my voice to a small but growing number o f nurse researchers who call for theories and education in nursing that locate and understand nurses’ and families’ roles in a socio-cultural, economic and political context, ^ t h o u t this understanding, which will assist nurses and others concerned with health and social care in the community to challenge existing power relations, there will continue to be erosion and devaluing o f nurses’ roles and ultimately o f nursing itself in the community. 187 The responsibility for change does not, however, rest solely within nursing Ultimately, the provision o f services to children and families is a social responsibility There is, therefore, a social benefit to reconceptualizing the roles o f nurses and women as distinct fi*om their historical and cultural roots that subordinate them to medicine and other male-dominated systems o f power Through this process, there is a potential to afiBrm the value and contribution o f caring work by both nurses and families. 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The lyn Schellenberg, RN (MSc (MS student) û jU icS L Alice Kiger, PhD, University of Aberdeen Telephone: 01224 53329 209 PARTZCZPATZOM CONSENT FORM invited to participate in a research study titled "The role of aurees with children/faillies with special health care needs in the community A comparative study in Scotland and British Columbia" T h e purpose of this stu(^ is to gain a better understcuiding of the role of nurses working with this population in communities, and to better understand the influences of policies, programs, and nursing education on nurses' roles. Y ou a r e What is involved? Your involvement will take no more than 3 hours of your time. I will invite you to participate in either an individual 1 hour interview or a 1 - 2 hour focus group discussion with other nurses, or both. I will take notes during the individual interviews. The focus group discussion will be taped so that I can concentrate on the discussion with all the participants. Potential benefits and coocexiis. Peurticipation in the study involves no known personal risks or discomforts, or direct known benefits for yourself or others. Participation is voluntary. If you choose not to participate or wish to withdraw from the stucty it will in no way jeopeurdise your work or alter your relationship with your agency or other health professionals. Information is confidential. You can refuse to answer any questions or stop or leave the interview at any time. You can also request that any portion of the notes or tape be erased. All tapes will be transcribed (typed) . No names or identifying information which would disclose your identity will appear in any of the written reports. All tapes and notes will be kept in a secured place and will be erased at the end of the stu^. The information obtained will be written into a thesis and may be presented at conferences or in publications to educate other health professionals. Questions? If you have any questions now or at anytime during the stud^ please contact: Researcher: Carolyn Schellenberg» BSN» RN» MSc student Tel. 01224 663123 ext. 43309 Advisor: Alice Kiger» RM» PhD» University of Aberdeen Tel. 01224 53329 Z understand the nature of this study and give my consent to participate. Z acknowledge receipt of a copy of the participants' information letter and consent form. Signature:___________________________ Date:___________ Witness :_____________________________ Date :___________ 210 Appendix E Diagram (as follows) The Context o f Care In Chapter One, I define the context o f care as the socio cultural, political, and economic context in which the relationships between policy and roles are formed and situated. The words surrounding the circle identify specific factors that contribute to this context. Some factors, such as hierarchies, are discussed mainly in one specific chapter, in this case Chapter Three. Factors such as history, politics, power, economics, values, beliefs, organisations, and professions are discussed in one or more chapters, but also serve as background to discussions throughout the findings. Politics, for example, is addressed in discussions pertaining to the role o f the state and the policy process, and economics emerges repeatedly in reference to the cost of care. Similarly, the term beliefs is used to include attitudes and ideologies discussed, particularly in Chapters Four and Five. Gender is implicit in the Chapter Three findings, and becomes visible in Chapters Four and Five in the analyses. The factor o f class does not emerge in the findings, but warrants further examination in a fiiture study in terms o f its relation to power, economics, professions, and other factors. Finally, while state is not listed as a separate factor, its role and/or impact is linked with all the others, thus influencing policy, nurse and family roles. The arrows demonstrate the primary direction o f influence. The middle vertical arrow indicates policy influence on the roles o f nurses and families, as well as on the relationship between them, expressed by the horizontal arrow. 211 The C ontext of C a re History Professions Gender . Poiitics bocioi Koiicy /i\ Ciass . ^ Nurses Organisations k • Economics Families y X Power Vaiues Beiiefs Hierarchies 212