BURDEN AS THE BRIDGE TO RESILIENCY IN MENTAL ILLNESS: EFFECTIVENESS OF THE STRENGTHENING FAMILIES TOGETHER FAMILY EDUCATION INTERVENTION by Kim Dixon B.A., University of Lethbridge, 1989 THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIRMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN COMMUNITY HEALTH SCIENCE UNIVERSITY OF NORTHERN BRITISH COLUMBIA December 2009 © Kim Dixon, 2009 Reproduced with permission of the copyright owner. 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Conformement a la loi canadienne sur la protection de la vie privee, quelques formulaires secondaires ont ete enleves de cette these. While these forms may be included in the document page count, their removal does not represent any loss of content from the thesis. Bien que ces formulaires aient inclus dans la pagination, il n'y aura aucun contenu manquant. Canada Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. BURDEN AS THE BRIDGE TO RESILIENCY IN MENTAL ILLNESS: EFFECTIVENESS OF STRENGTHENING FAMILES TOGETHER FAMILY EDUCATION INTERVENTION By Kirn Dixon Abstract This study explores and describes the effectiveness of the Strengthening Families Together (SFT) education program for burden and resilience. This research used a single case study with multiple unit method to assess the effectiveness of SFT based on the trauma theory. The study combined quantitative and qualitative methodology to explore the effects of SFT and to describe a predicted decrease in burden and an increase in resiliency following participation in SFT. The Wilcoxon signed-rank test revealed burden levels were significantly lower following participation (Mdn = 39) than before participation (Mdn = 43), z = -2.23, p < .05. The qualitative pattern-matching analysis supported the predicted decrease in burden among family participants suggesting SFT was effective at decreasing burden. However, respondents' resiliency levels were not significantly higher following participation (Mdn = 45) than before participation (Mdn = 42), z = -1.53, p < .05. Although, the qualitative data revealed an increase in resiliency, this result was not supported by the quantitative results suggesting SFT may be less effective at increasing resiliency. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. iv Table of Contents Abstract ii Table of Contents iv List of Tables vii List of Figures viii Introduction 1 Chapter One 3 Impetus for the Study 3 Rationale for the Study 4 Purpose of the Study 5 Statement of Research Problem 6 Chapter Two 7 Researcher Standpoint Theoretical Perspectives Chapter Three 7 8 12 A Review of the Literature 12 Mental Illness and the Family Experience 12 Mental Illness and Family Burden 14 Mental Illness and Family Resilience 19 Mental Illness and Family Interventions 24 Mental Illness and Family Psycho-education 26 Mental Illness and Family Education 29 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. V Chapter Four 36 Methodological Strategy 36 Model 37 Concepts 39 Theory 40 Hypotheses 41 Methodology 43 Methods 45 Chapter Five 57 The Case: Strengthening Families Together 57 Sampling 59 Quantitative Measures 60 Qualitative Measures 61 Chapter Six 64 Data Analysis 64 Quantitative Analysis 64 Reliability and Validity 64 Normal Distribution 66 Correlation 72 Wilcoxon signed-rank test 76 Qualitative Analysis Stage 1: Dealing with Catastrophic Events Crisis/Chaos/Shock Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 78 80 81 vi Denial and 'Normalizing' 84 Hoping Against Hope 84 Stage 2: Learning to Cope 84 Anger, Guilt and Resentment 85 Recognition 86 Grief 88 Stage 3: Moving into Advocacy 95 Understanding 95 Acceptance 97 Advocacy and Action 98 Chapter Seven 100 Discussion 100 Recommendations 105 Limitations and Future Research 107 Conclusion 109 References 112 Appendix A Information Sheet for Participants 120 Appendix B Informed Consent Form for Pre Questionnaire and Interview 122 Appendix C Informed Consent Form for Post Questionnaire and Focus Group 124 Appendix D Before and After Questionnaire 126 Appendix E Interview Questions 132 Appendix F Focus Group Questions 133 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. vii List of Tables Table 1 SFT Methodological Strategy 37 Table 2 SFT Matrix Logic Model 39 Table 3 SFT Curriculum with Changes 58 Table 4 Cronbach's Alpha Reliability Test 64 Table 5 SFT Descriptive Statistics 69 Table 6 Demographic Correlations 76 Table 7 Non-parametric Descriptive Statistics 76 Table 8 Concepts, Stages and Emotional Responses in SFT 80 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. viii List of Figures Figure 1 Composite pre burden distribution with normal curve (n=7) 67 Figure 2 Composite post burden distribution with normal curve (n=7) 67 Figure 3 Composite pre resilience distribution with normal curve (n=7) 68 Figure 4 Composite post resilience distribution with normal curve (n=7) 68 Figure 5 Boxplot of composite pre and post burden and resilience scores 71 Figure 6 Scatterplot of composite pre and post burden (r positive) 73 Figure 7 Scatterplot of pre and post resilience (r positive) 74 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 1 Introduction There are more hospital beds occupied by individuals diagnosed with mental illness than for any other diagnosis. Eight percent of hospital beds are occupied by individuals diagnosed with schizophrenia in Canada (BCSS, 2003). The number of individuals who will experience a diagnosable mental illness in their lifetime has risen to one in four yet not everyone gets the help they need. There are more people living with mental illness and addictions on our streets and warehoused in our jails than are receiving medical treatment for mental illness (Burland, 2001). Yet, the funding available for mental health research does not even begin to parallel hospital admissions for schizophrenia. For every cancer patient about $400 is spent on research; for every individual living with schizophrenia only $11 is spent on research (BCSS, 2003). Stigma and discrimination appears to not only affect individuals but has infiltrated the realm of research. While it is stigma that stops us from accessing mental health treatment, it is discrimination that dissuades us from donating to schizophrenia and other mental health research. Yet the personal and economic costs of mental illness are immense. The Canadian workplace loses valuable productivity and taxpayers bear the extra burden of health care. "Neurophsychiatric disorders are growing faster than cardiovascular disease as a percentage of the global burden of disease" (BC Partners, 2003). Without adequate community supports the personal costs of mental illness can include the loss of housing, employment, nutrition, income, children, leisure opportunities and community participation (BC Partners, 2003). I believe researchers have an ethical responsibility to consider tackling issues that may not be prized or popular and that research is an important tool for positive change. Our efforts with protest and education to address the stigma and associated discrimination that Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 continues to plague mental illness are not effective at eliciting a change in negative attitudes or actions. Contact based strategies that elicit a positive emotional response from the audience have been found to have a strong effect and diminish discrimination. Research such as this study presents the stories of family members affected by mental illness and in this way describes their experiences to the readers. Although, the primary purpose of this research is to explore the family experience an additional benefit is the opportunity for family members to tell their stories to the researcher. The reader then not only gets the facts but may also begin to feel empathy for the lived experience of families affected by mental illness. If a study on mental illness elicits a positive emotional response from the reader then there may be a positive change in beliefs and behaviours that could lead to more research dollars and begin to alleviate the immense personal and economic costs of mental illness. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 Chapter One Impetus for the Study BC Schizophrenia Society (BCSS) Education Director Dr. Nicole Chovil (2006) suggested that an evaluation of the new Canadian Strengthening Families Together (SFT) family education program for families of individuals living with mental illness would support and enhance the work of BCSS. Mr. Gary Glacken, BCSS Executive Director encouraged an evaluation of SFT with a letter of support (2007). The Schizophrenia Society of Canada (SSC) had yet to conduct any published research evaluation of the new family intervention. Rossi and Freeman cited in Rubin and Babbie (2005, p. 395) stated that the purpose of program evaluation was "to assess and improve the conceptualization, design, planning, administration, implementation, effectiveness, efficiency, and utility of social interventions and human service programs." Although, it was beyond the scope of the research to conduct a full program evaluation, I undertook an assessment of the effectiveness of SFT by exploring and describing changes in family burden and resilience following participation in the family education program. At the time of writing the "Mental Illness and Strengthening Families Together Family Education Program: Impact on Burden and Resilience. A Pilot Study." thesis there were no other published studies of SFT. This pilot study may be the impetus for further study of SFT and other peer family education programs. The new Canadian Strengthening Family Together family education program provides support, awareness and tools for families of individuals living with mental illness. Although, the SFT family education program is conducted nationally, the study focused on participants living in Prince George. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 4 Rationale for the Study The BC Schizophrenia Society was contracted by Northern Health (NH) to improve the quality of life for those affected by mental illness through peer support, education, and advocacy. Family members and individuals living with mental illness were trained to facilitate support groups, teach education programs, and to advocate at both the individual and systemic levels. The first peer family education program offered by BCSS to family members with a relative living with mental illness was the Journey of Hope (JOH) in the mid 1990s. The JOH family education program was brought to British Columbia (BC) by families living in the lower mainland, from the National Alliance on Mentally Illness (NAMI) in the United States. The program eventually changed its name to the Family-toFamily Education Program (FFEP) and continued to be offered in BC. However, in spite of an attempt to "Canadianize" the content of FFEP, participants often commented that they would like to see a family education program that focused exclusively on the needs of Canadian families. In response to this identified need, the Schizophrenia Society of Canada (SSC) produced the Canadian Strengthening Families Together (SFT) family education program. Strengthening Families Together was piloted in a variety of locations across the country before public release in 2003. After gathering feedback from teachers and participants, the SSC revised and released the second edition of Strengthening Families Together in September 2005, which remains in use today. Over the past number of years there has been growing pressure from the Ministry of Health and the new Ministry of Healthy Living and Sport on health authorities, and subsequent pressure on contractors like the BC Schizophrenia Society, to offer evidence- Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 5 based best practices. There is plenty of evidence to support the value of education for families of individuals living with mental illness (Bertrando, 2006; Drapalski, et al, 2008; Hatfield, 1990; Johnson, 2005; Jones, 2005; Marsh & Johnson, 1997; Moore, 2005; O'Connell, 2006; Sherman, 2003). BC's mental health reform best practices recognizes that "training in coping skills, communication, information and support reduces the level of crisis in families, as well as reducing the relapse rate of the patient" (Ministry of Health, 2000, p. 5). However, most of the research is focused on professionally led family psychoeducational programs (Chovil, 2006). The benefits of this research project are twofold. There is the assessment of the effectiveness of a new family education program plus the added element of studying a peer program. Both aspects add to the research literature and specifically provide the much-needed evidence to assess the effectiveness of the Strengthening Families Together peer family education program and recommendations for possible changes needed to meet the criteria for evidence-based best practice. Purpose of the Study A review of the literature recommended that the researcher first identify the primary goal and measurable objectives of the study before the questions are posed and the discussion of methodology. The primary goal of my research was to assess and improve the effectiveness of the SFT family education program. Although, most family education programs often look for improvements in both consumer and family outcomes, the SFT study focused exclusively on the experience of family participants. The measurable objectives of the SFT study were to explore and describe changes in family burden and resiliency among participants living in Prince George who have a family member living with mental illness following participation in SFT. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 6 Statement of Research Problem The first research question that arose from these two objectives was what is the individual experience for family members affected by mental illness before participation in SFT? Secondly, do family burdens change for individuals who participate in the Strengthening Families Together family education program? Thirdly, do family participants demonstrate a change in resiliency following participation in SFT? Based on a review of the literature, the study proposed that participation in the Strengthening Families Together family education program reduces family burden and increases resiliency among family participants, supporting the argument that SFT is evidence based best practice. The SFT assessment has obvious practical significance for mental health practice and policy. If SFT proves to have a positive impact then it becomes easier to argue to sustain the program. If the study identifies areas of weakness in the program then changes can be made to improve the family intervention to move it towards evidence based best practice. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 7 Chapter Two Researcher Standpoint As the Regional Manager for the BC Schizophrenia Society (BCSS) in Prince George from 1998 to 20091 was continually reminded of the challenges facing the people I served and implemented a variety of programs over the years to improve the quality of life for those affected by mental illness. Part of my own personal experience was a growing awareness and acceptance of mental illness in my own family. While individuals go through their own journey of recovery I have discovered that family members also go through their own parallel journey of adaptation to mental illness. Given my personal experience with five generations of family members living with mental illness and eleven years of professional experience working with families affected by mental illness, the strength I had as a researcher for this study was the lived experience, however the weakness or bias I may have brought to the study were higher expectations for the SFT family intervention. This study was also influenced by my ontological perspective and epistemology which guided the methodology or "ways of doing" found in this study (Thien, 2006). One of my guiding "ways of being" is a strength-based approach that believes individuals know what they need if they are asked (Thien, 2006). The traditional medical model of care often gives health professionals the power to make decisions for families and individuals affected by mental illness. There is growing evidence that families and individuals living with mental illness need to be included in all aspects of their health care to ensure best practices (Ministry of Health, 2000; Vancouver/Coastal Mental Health Family Advisory, 2005). This assessment of the effectiveness of SFT has given a voice to families with the possibility of leading to improvements that will be based on the expressed needs of family members. After Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 8 a decade of post secondary education and more than half a century of life, I have observed that formal education has given me tools for learning but it has been the lived experience that has given me the "ways of knowing" (Thien, 2006). Families taking the Strengthening Families Together family education program came with the lived experience and this research explores and describes changes in family burden and resiliency following participation in SFT. The final selection of the theoretical perspective that guided the SFT study was supported by research and aligned with the researcher's standpoint. Theoretical Perspectives Gubmam and Tessler (1987) present three theoretical perspectives that dominated the early research on mental illness in families. The first perspective viewed the family as an etiological agent, or the cause, of mental illness. Originally the family, and in particular mothers, were blamed for causing mental illness (Lefley, 1989; O'Connell, 2006; Rungreangkulkij & Gilless, 2000). Hatfield (1990) explains that the psychoanalytical theory held at the time focused on psychological explanations of disorders rather than on a study of the brain and its biology creating a "universal theory of human deviance" (p. 4). Hatfield (1990) argues that although this position is not supported by research evidence, continued discrimination suggests that in practice this belief is held to be true even today (HamidBalma & Arthur, 2005). The second perspective viewed families merely as a possible source of support in preventing patient relapse. Expressed emotion theory is a clinical concept that studies the emotional environment of families as a possible factor in patient relapse (Rungreangkulkij & Gilles, 2000). Clinical family psycho education programs have been developed to lower expressed emotion through education and skills development. The argument that expressed Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 9 emotion can be interpreted as blaming families for causing mental illness fails to consider the entire family context or other possible causal variables. The third perspective places the emphasis on a study of the family experience of mental illness. Early studies revealed that families living with mental illness experience economic and emotional challenges or burden. Hoenig and Hamilton conceptualized objective and subjective burden in 1965. Objective burdens were defined as the observable patient behaviours and subsequent disruptions in daily life for other family members. Subjective burden was defined as the family's emotional reaction to the caregiving experience. Gubman and Tessler (1987) recognized early on that the impact of mental illness on family members might also include a rewarding or positive aspect. More recent studies (Saunders, 2003) continue to recognize that burden is related to caregiving responsibilities, however, there has been a shift in the research towards a more balanced perspective of the family experience by exploring resiliency. Hatfield (1990) adds a fourth conceptual approach of stress, coping and adaptation that is used in the study of families living with mental illness. Baxter and Diphi (1998) describe the evolution of the family trauma model through several theories conceptualizing loss and the experience of mental health consumers. As early as 1944 Erich Lindemann, as cited in Baxter and Diphi (1998), defined the process of grief as a normal response to trauma. And in 1969 Elisabeth Kubler-Ross, as cited in Baxter and Diphi (1998), described the stages of loss and grief. Several researchers (Deegan, 1988; Herman, 1992; and Strauss & Davidson, 1992) over the years recognized the loss and grief experienced by individuals living with mental illness and the process of recovery as distinguished from a cure. Hatfield first introduced the family trauma model in 1987 suggesting family members affected by Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 10 mental illness go through a different but parallel process in dealing with the trauma of mental illness, coping with unanticipated changes and adapting over time to mental illness and the changes it brings. Both the model of recovery for consumers and the model of adaptation for family members affected by mental illness normalize and validate their unique experiences and help point towards interventions that address their individual needs for successful recovery and adaptation (Baxter & Diphi, 1998). Burland (2001) uses the trauma and adaptation model in the Family-To-Family Education Program (FFEP) and suggests that individual family members dealing with mental illness move through predictable stages of emotional response including, i) dealing with a crisis, ii) learning to cope and iii) moving into advocacy. Burland (2001) goes on to suggest that families need support, education and skill training throughout this process. This model views a family's positive and negative actions and reactions as coping strategies to the episodic and persistent nature of mental illness (Lefley, 1989). Hatfield (1990) argues that although stress is a universal experience, the theory of coping and adaptation still provides the best framework to explain a family's unique experience of dealing with a catastrophic event like mental illness. Rungreangkulkij and Gilles (2000) argue for a fifth Family Resiliency Model to support the study of the entire family. Unfortunately, the complexity of this model makes it difficult to isolate variables for study and was beyond the scope of this literature review and of the Strengthening Families Together family education study. Hatfield (1990) recommends using the theory of stress, coping and adaptation as the conceptual approach to explore, describe or explain the family experience of living with mental illness. "The theory of coping and adaptation starts with the assumption that all Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 11 living systems strive to maintain themselves in their environment, to overcome obstacles, and to achieve autonomy and self-determination" (Hatfield, 1990, p. 20). In the context of the SFT study family stress is brought on by the trauma of mental illness, followed by coping with daily living challenges and finally adapting to the long-term changes mental illness brings to a family. Trauma and adaptation theory argues that all people have the capacity to master change and achieve competency. Hatfield (1990) suggests that families need problem-solving skills, education and empowerment to achieve change and competency. Hatfield (1990) argues that families dealing with mental illness experience trauma and must cope by adapting new behavioural solutions to deal with the uniqueness, duration and frequency, pervasiveness and ambiguity of mental illness. Hatfield (1990) goes on to argue that the emotional impact of mental illness threatens self-esteem and self-worth, security, integrity and optimism, and a loss of the ill relative as they were before mental illness. The National Alliance on Mentally Illness (NAMI) adopted the trauma theory in the creation of the Family-To-Family Education Program (FFEP). FFEP continues to be a leading example of evidence based family education (Dixon, L & McFarlane et al, 2001; Dixon, L & Lucksted et al, 2004). Although, Rungreangkulkij and Gilles (2000) argue for the Family Resiliency Model in the study of the entire family system, they do acknowledge that the stress and coping framework is suitable for a study of individual family members. All of these arguments support the use of the coping and adaptation theoretical approach in the Strengthening Families Together family education study while still recognizing that there is no single best way to cope and adapt to the challenges of mental illness. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 12 Chapter Three A Review of the Literature Beyond a review of research methodology to develop an evidence based methodological strategy for the study, it was important for the researcher to begin with a broad understanding of mental illness to help establish a baseline of the family experience. To narrow the scope of the literature review I focused on the experience of burden and resiliency in family members affected by mental illness. The second stage of the literature review shifted with an exploration and description of mental illness and family interventions with an emphasis on a clear distinction between professional family psychoeducation and peer family education programs. In this way, the researcher was able to begin with a broad look at the literature on mental illness and eventually bring the focus onto family education interventions like Strengthening Families Together. Mental Illness and the Family Experience Studies on the family experience of mental illness emerged soon after the deinstitutionalization of the mentally ill began in the 1950s. The tremendous impact of caring for an individual living with mental illness emerged almost immediately. "In the 1960s, social scientists in Great Britain and the United States began calling attention to the social costs of deinstitutionalization" (Gubman & Tessler, 1987, p. 228). Even in early studies of families living with mental illness, over fifty percent of families reported the costs of caregiving as burdensome (Gubman & Tessler, 1987). Although early studies of the family experience of mental illness focused on family burden, there was an acknowledgement that there may be positive aspects to the caregiving experience (Gubman & Tessler, 1987; Loukissa, 1995). Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Today the literature generally agrees that mental illness may be caused by a complex combination of, as yet, unknown biological, psychological and social factors, called the biopsycho-social model (Schizophrenia Society of Canada, 2005). Researchers agree that mental illness has a profound impact on family members (Harvey & Burns, 2003; Johnson, 2000; O'Connell, 2006; Rose, 1998; Saunders, 2003). Saunders (2003) identifies the variables that have typically been used in research between 1970 and 2000 to measure the impact of mental illness on family members including, i) coping, ii) burden and distress, and iii) resiliency, iv) depression, v) social support, vi) patient behavioural problems, and vii) family functioning. Veltman et al., (2002) found that families continue to experience living with mental illness as a "mixed blessing." In a more recent study, Tranvag and Kristoffersen (2008, p. 12) found family members "experienced a mixed feeling of uncertainty, powerlessness and hope" (Tranvag & Kristoffersen, 2008, p. 12). However, Tranvag and Kristoffersen (2008) found that the more positive aspects of the caregiving experience emerged over time including acceptance, reconciliation and hope. This finding is supported in an earlier study of male caregivers of mentally ill relatives who also "expressed improvement in role development over time" (Mays & Lund, 1999, p. 24). Tranvag and Kristoffersen (2008, p. 15) go even further to suggest that the experience of burden is the necessary bridge to resiliency over time and that "the grieving process can initiate a healing process leading to dawning acceptance [and]...this led to reconciliation and new hope." Family members affected by mental illness continue to need interventions to acquire the skills needed to cope and to sustain hope (Stjernsward & Ostman, 2008) and this is echoed in the Schizophrenia Society of Canada tag line; "A reason to hope. The means to cope." "Families living with mental illness experience stress and burden and need practical and Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 14 emotional support" and family members want to "help others in a similar situation cope and hope" (Stjernsward & Ostman, 2008, p. 365-366). I agree with Marsh and Lefley (1996) that the concept of the family experience of mental illness needs to be expanded to include both burden and resilience with a goal of reducing burden and increasing resiliency. I have included both aspects of the caregiving experience in the SFT study to honour families in their struggle and to capture a more complete and balanced picture of their experience. Mental Illness and Family Burden The literature has long agreed that families living with mental illness experience burden (Loukissa, 1995; Marsh & Johnson, 1997). "The term 'burden' simply means the negative impact of illness" (McGuire, Wells, Bruce, Miranda, Schefler, Durhan, Ford & Lewis, 2002, p. 179). Hoenig and Hamilton distinguished objective and subjective burdens in 1965. Objective family burdens refer to the specific challenges linked to symptoms, systems and stigma faced by family members every day (Marsh & Johnson, 1997). Subjective burden is defined as the family's emotional reaction to the caregiving experience (Loukissa, 1995). Caregiver burden has been linked to caregivers' characteristics and patients' conditions (Caqueo-Urizar & Gutierrez-Maldonado, 2006; Roick, Heider, Toumi & Angermeyer, 2006). Cuijpers and Stamm (2000) found that strain on family relationships and a family's ability to cope with mental illness objective burdens affected a family member's subjective burden. Another important predictor of family burden is the positive and negative symptoms an ill relative experiences (Ohaeri, 2003). "Caregivers who can cope better with the patient's behaviour or who can improve their coping abilities over time have less burden" (Roick et al, 2006, p. 363). Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. The 1980s saw an increase in the development of instruments to measure family burden. Studies on the caregiving experience in the 1980s focused on both objective and subjective burden using the newly developed measurement instruments. Most of the research in the 1980s confirmed that families living with mental illness do experience burden (Gubman & Tessler, 1987). The first studies to examine the relationship between family burden and supportive and educational interventions emerged in the late 80s. Studies continue to find that educational support interventions reduce family burden (Loukissa, 1995; Ohaeri, 2003). Sherman (2007) provided a summary of variables and measures used to assess family functioning. The tool designed to measure both objective and subjective burden was identified as the Burden Assessment Scale (BAS) created by Reinhard at al., in 1994. The BAS does not consider the impact of the ill relative's disruptive behaviour or the extra demands caregiving imposes, limiting its effective use in the SFT study (Sherman, 2007). Although, the Experience of Caregiving Inventory developed by Szmulker et al., in 1996 is used to measure positive aspects of the caregiver's role, it does not directly address resiliency, again making it a poor choice for the SFT study. The Family Member Questionnaire (FMQ) developed by Dr. Joyce Burland in the study of the effectiveness of the Family-To-Family Education Program was designed specifically to measure burden, worry, empowerment and self-care in family members following participation a family education program (Dixon, L et al., 2001a). This made the FMQ a suitable choice to quantitatively measure change in burden and resiliency among respondents following participation in the Strengthening Families Together family education program. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. The 1990s saw a growing number of studies looking at the relationship between family interventions, like psycho education, and family burden (Hatfield, 1990; Hugen, 1993; Marsh & Johnson, 1997). The results are mixed with some interventions showing significant gains while others did not appear to affect family burden (Marsh & Johnson, 1997). Sherman (2007) suggests that the mixed results might be due, in part, to the lack of consistent measurement variables and tools used to assess family functioning and the varied nature of family interventions. Better coping among family members requires adequate system supports and suitable interventions (Caqueo-Urizar & Gutierrez-Maldonado, 2006). Family interventions can decrease subjective burden and improve family functioning, unfortunately many of these services continue to be underutilized (Glanville & Dixon, 2005). Glanville and Dixon, L. (2005, p. 19) argue, "that the multidimensional experience of caring for a mentally ill family member is not adequately addressed in existing services to families." They go on to suggest that family interventions need to include effective coping strategies, education and social support. Researchers generally agree that families living with mental illness experience both objective and subjective burden (Gubman & Tessler, 1987; Hatfield, 1990; Stam & Cuijpers, 2001). They also agree that family support and education interventions can reduce burden (Hatfield, 1990; Marsh & Johnson, 1997; Stam & Cuijpers, 2001). However, every family intervention needs to be assessed separately to determine if qualifies as evidence based best practice. Research prior to the twenty-first century was largely focused on the negative aspects of the caregiving experience, particularly burden (Loukissa, 1995). Newer research has begun to take a more balanced view of the caregiving experience by exploring both the negative and positive aspects of the caregiving experience (Marsh & Lefley, 1996; Veltman Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. et al., 2002). I think it is important to note at this point that the literature (Marsh & Lefley, 1996; Saunders, 2003; Veltman et al., 2002) has identified a number of negative aspects of the caregiving experience including burden. Burden has been conceptualized as a negative aspect of the caregiving experience and has been clearly defined in the literature. However, I think a definition of resiliency, as a positive aspect of the caregiving experience, is less clear because of the paucity of data focusing on the concept. It was important to identify the distinct attributes that constitute both burden and resiliency in the SFT research study to clearly define the variables and to more accurately identify change. The research suggests that family burden is influenced by family characteristics, symptomatic illness, and availability of support and skills training, and fluctuates along with the episodic nature of mental illness (Solomon & Draine, 1995). The literature also points to a number of factors related to support and coping skills that can mediate burden. Personal and social resources build a family member's capacity to cope and adapt to living with mental illness (Solomon & Draine, 1995). Solomon and Draine (1995) suggest that by adopting a coping adaptation theoretical framework, mental health professionals will view families as a valuable resource along the continuum of care for their ill relatives. They argue that if better coping skills and increased self-efficacy, or resiliency, reduce subjective burden then these variables should be used to measure the effectiveness of educational interventions (Solomon & Draine, 1995). Lefley (1989) argues that family stigma is a determinant of family burden. Stigma is not limited to the person living with mental illness but also extends to other family members. Stigma refers to the feelings of guilt and shame that family members and individuals living with mental illness impose upon themselves. Lefley argues that mental health professionals Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. add to this family burden through discrimination by withholding support and information, providing inconsistent treatment and directives, passing judgement and alienating family members, and evoking defensive responses from family members. Lefley and Hatfield (1990) suggest that beliefs about families and individuals living with mental illness are moving towards a more positive perspective because research recognizes the biological basis of mental illness and the impact of family burden because of deinstitutionalization and the emerging role of family members as caregivers. The emergence of family-based advocacy organizations like the National Alliance on Mentally Illness (NAMI) in the United States and the Schizophrenia Society of Canada (SSC) have also helped reduced stigma and discrimination. These advocacy organizations have been instrumental in advocating for evidence based best practices for family members including, improved professional alliances, involvement in program planning and evaluation, and active participation in public and professional education. Lefley argues that this "new collaborative model of clinician-family relationships" has helped change negative views and reduces stigma and discrimination. Although Lefley (1989) and Hatfield (1990) were hopeful that individuals and systems were moving towards a more positive change in attitude about people living with mental illness and their families, discrimination is still practiced through the negative actions of individuals and institutions (Hamid-Balma & Arthur, 2005; Veltman et al., 2002). Stigma and discrimination continue to plague mental illness as evidenced by the fact that we have more people with mental illness living on our streets and warehoused in our jails than are receiving health care (Burland, 2001). Ohaeri (2003) acknowledges that there has been a paradigm shift from the discrimination described in early studies using psychoanalytical and social theories that blamed families for mental illness to a more progressive stance that Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. acknowledges family members as partners in need of support. Unfortunately, it appears that "sustained interest to actualize the positive findings of nearly five decades of research" is still elusive (Ohaeri, 2003, p 465). One of the goals of the Strengthening Families Together family education program is to diminish the stigma attached to mental illness within the family. However, addressing the broader societal issue of discrimination surrounding mental illness is beyond the scope of the SFT family education program and may continue to be a significant aspect of the caregiving experience and an attribute of burden. Mental Illness and Family Resilience "Although researchers accepted 'burden' as an 'all-encompassing' term, many caregivers reported positive and uplifting experiences" (Ohaeri, 2003, p, 457). In Saunder's (2003) review of the literature, he notes that more recent research has shifted to include an exploration and description of family member strengths in coping and adapting to the challenges of living with mental illness. Rungreangkulkij and Gilless (2000) argue that family resilience is enhanced with family psycho education and family education. Saunders (2003) argues that further study is needed to determine if resilience in families reduces burden. The literature generally agrees that support, education and coping skills all contribute to increasing resiliency in families (Lucksted & Dixon, 1999; O'Connell, 2006). Resilience can be measured in individuals, families and communities (Mannion, 1996; Medhurst, 2009). It is beyond the scope of this literature review and the SFT study to consider the characteristics of resiliency in all of these domains. The focus will be on individual resiliency among family members affected by mental illness. Children living with a parent diagnosed with mental illness were the first family members to exhibit resiliency in research (Mannion, 1996; Marsh & Lefley, 1996). This new Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. resiliency was based on the measure of personal and family capacity and community supports. Marsh and Lefley (1996) caution that this resiliency does not negate the fact that mental illness still carries a measure of burden for all family members. Even resilient individuals have a mixture of strengths and weaknesses. Resiliency is defined as "the ability to rebound from adversity" by adapting to challenging circumstances and strengthening families (Marsh & Lefley, 1996, p. 2). Dyer and McGuiness (1996, p. 276) define resiliency as "hope embedded in adversity." "It is our capacity for resilience that gives us hope and optimism in times of upheaval" (Medhurst, 2009, p. 2). Tusaie and Dyer (2004) go even further to suggest that resiliency is a combination of abilities and characteristics that allow an individual to bounce back, and cope successfully in spite of significant stress. Tusaie and Dyer (2004) add that in addition to individual protective factors, environmental risk factors might pose a greater challenge for families affected by mental illness. Resilience is not static and is maintained with a balance of individual protective factors and environmental risk factors (Dyer & McGuiness, 1996; Tusaie & Dyer, 2004). Frances Westley, as cited in Medhurst (2009, p. 2), reminds the reader that this balance and the capacity for resilience requires family members affected by mental illness "to let go and hang on simultaneously...the challenge is knowing what and how to let go." "Protective factors shield the family from the possible influence of risk factors. Risk factors decrease the probability of resilience" (Greeff et al. 2006, p. 286). Risk factors can be biological, social, economic or psychosocial. Tusaie & Dyer (2004) suggest that individuals who exhibit resilience demonstrate optimism, intelligence, creativity, and a sense of humour. They have a belief system that connects them with others while maintaining a sense of self. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. According to Dyer and McGuiness (1996), individuals who are resilient exhibit four essential attributes including the ability to rebound from crisis and carry on, an appreciation and acceptance of life's circumstance, the determination to deal with the inevitable challenges in life, and connections to others. Tusaie and Dyer (2004) add that educational abilities and coping strategies also contribute to resiliency. Dyer and McGuiness (1996) suggest that positive outcomes from family interventions that correspond to the essential attributes required for resiliency include improved, i) social and system supports, ii) personal resources such as insight and self-reliance, and iii) problem-solving skills. The concept of resilience focuses on the assets, strengths, and capabilities of the individual rather than a deficit model that guides practice based on problems and deficiencies (Greeff, Vansteenwegen & Ide, 2006; Medhurst, 2009). Resilience assumes families have the ability to cope and adapt if they have adequate resources and supports (Greeff et al, 2006). Greeff et al. (2006) divide the resiliency model into adjustment and adaptation phases. The adjustment phase requires individuals to make relatively minor changes to cope with a stressor. The trauma of mental illness requires family members to adapt with more fundamental changes to "goals, rules, boundaries and patterns of functioning" (Greeff et al., 2006, p. 286). These dramatic changes in family functioning require adequate support and help. "Three possible sources of help are described in the Resiliency Model: individual family members, the family system, and social support from the environment" (Greeff et al., 2006, p. 288). In the family system, the bond among family members and their ability to adapt are important for resiliency (Greeff et al., 2006). Social support from a variety of sources is seen as one of the most important resources for family members learning to cope and adapt to the affects of mental illness (Greeff et al., 2006; Solomon & Draine, 1995). In a Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 22 study of spouses affected by mental illness, Mannion (1996) identified four sources of support to promote change including personal and family resources plus community education and support groups. Greeff et al. (2006, p. 298) go so far as to suggest that family members need to be "supported throughout the entire adaptation process." Research that focuses exclusively on resiliency in families living with mental illness is limited. One such study by Marsh and Lefley (1996) had 39.7% of respondents still offer unsolicited remarks about family burden. In another study of resiliency in spouses affected by mental illness in 1996 (Mannion) almost 50% of the respondents volunteered negative comments. In spite of the unsolicited remarks about family burden, the capacity for family resiliency was still evident in the strengths identified by respondents. In Marsh and Lefley (1996) family resilience was demonstrated through strength and unity among family members who stayed positive even while coping with crisis and adapting to change. In the same study respondents attributed personal resiliency to their willingness to learn and grow through active participation to enhance their ability to cope. A more recent study looking at resilience in family members affected by mental illness by Greeff et al. (2006) identified three strengths that contributed to a family's ability to adapt; including mutual dependence and the ability to work together, family members ability to influence and participate in change, and change seen as normal and necessary for growth. "This characteristic of family hardiness is the single attribute that was most clearly indicated by parents and children as being directly related to family resilience" (Greeff et al., 2006, p. 296). The literature clearly supports the argument that family burden is related to caregiving responsibilities. However, further research is needed to look at resilience in families and how this may reduce the effects of burden. Given the overall goal of the SFT Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 23 family education program to improve family outcomes, it was appropriate to include both burden and resiliency in the study. Rose (1998) argues that studies that focus exclusively on family burden fail to consider the context of caregiving or how family caregivers adapt to the caregiving experience. Hope sustains families over time allowing them to adapt and move through their grief (Rose, 1998). Grief dominates subjective burden for most family members (Marsh & Johnson, 1997). Solomon and Draine (1996) distinguish between grief and burden. They argue that if grief is the emotional response to loss, then [objective] burden can be described as the added responsibility for caring for someone with diminished capacity. If subjective burden is defined as the emotional responses of family members to mental illness then grief could be considered an attribute of burden. Burland (2001) tells families in the FFEP that their most painful feelings are anger, entrapment, guilt and grief. Burland (2001) agrees with Solomon and Draine (1996) that families need to move through grief in an ongoing process of coping, adaptation and eventual acceptance and letting go. Tranvag and Kristoffersen (2008, p. 15) agree that "the grieving process can initiate a healing process leading to dawning acceptance,... reconciliation, and new hope" among family members who experience grief over the losses in mental illness. Hope is a significant part of the grieving process and is linked to a family's ability to cope and adapt to the ever-changing world of mental illness (Bland & Darlington, 2002). Hope ebbs and flows in response to the family's knowledge of mental illness and its episodic nature. Hope helps families move from a challenging present to a more realistic and positive future. This definition links today's losses, and grief, to a more hopeful future. Families identified a variety of sources of hope including, i) family and friends, ii) professionals, iii) religious or spiritual beliefs, and iv) attitude (Bland & Darlington, 2002). The importance of Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 24 family and friends argues for the value of peer support and the SFT family education program. Grief and hope may be more adequately processed in an ongoing family support group, rather than a time limited family education program. However, given the strength and prevalence of these feelings it was important to note the impact of the SFT family education program on grief and hope among family participants. Mental Illness and Family Interventions A study of a family's experience of living with mental illness can point to their needs and suggest possible interventions. Typically families are not prepared for the responsibility of caregiving and often do not receive adequate supports themselves (Tel & Esmek, 2006). The irony is that family members caring for an ill relative are at "risk of psychological and physical disorders" if they do not have adequate knowledge, skills and support (Tel & Esmek, 2006, p.55). "The content [of family education interventions] also needs to be flexible to accommodate the needs of the group and the input from the families as to the topics covered" (Mullen, Murray & Happell, 2002, p. 225). When asked what they need, families cited information about mental illness, how to navigate the mental health system and how they can help their ill relative (Johnson, 2005). Bertrando (2006) outlines the evolution of family interventions for schizophrenia that date from 1955 to 2005. The first interventions believed the family needed to change their communication patterns to address family psychopathology. Secondly, antipsychiatry emerged suggesting schizophrenia was a result of distortions in Western society. The third intervention model started working with the individual living with mental illness and focused on their relationships with others. Finally, psychoeducation emerged as the fourth mental health intervention for families affected by Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. mental illness and recognized schizophrenia as a biological disorder. Bertrando (2005) along with Magliano and Fiorillo (2007) agree that a fifth phase of family interventions for schizophrenia is developing right now with the integration of a variety strategies to improve both consumer and family member outcomes. Murray-Swank and Dixon, L. (2004) recognized that family interventions had come full circle beginning with professional interventions for consumers, and eventually adding supports for the rest of the family, followed by peer interventions for family members and finally adding peer supports for consumers and recognizing the value and importance of approaches that include both the consumer and their family as an evidence-based practice. In a new meta-analysis on psychoeducation in schizophrenia, it was found that "statistically significant results on relapse and rehospitalization were found only when families were included" (Rummel-Kluge & Kissling, 2008, p. 171). Mental health interventions can be created for consumers or family members only, or designed for both patient and family participation and improved outcomes (Mullen et al, 2002). Family interventions can include individual or group services led by professionals or peers. Although, there are a great many family interventions, in 1999 the World Schizophrenia Fellowship, as cited in McFarlane, Dixon, Lukens & Lucksted, 2003), standardized the goals, principles and methods to be used in family interventions. McFarlane et al. (2003) detail the goals and principles for working with families and included behavioural family management, family psychoeducation, psychoeducational multifamily groups, relatives' groups, family consultation and therapeutic education as evidence-based family intervention models. Services can include education, support, advocacy and talk therapy (Hatfield, 1990; Marsh & Johnson, 1997). Talk therapy is the responsibility of Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 26 qualified service providers and not a component of peer family education. Scheyett (1990) argues that advocacy is yet another burden of care placed on family caregivers because of the continued disregard of families by the system. It was important to remember family members participating in the SFT study may identify advocacy as an attribute of burden. Marsh and Lefley (1996) argue that providing information, support and skills training to families will enhance family outcomes. Hatfield (1990) agrees that education and support are two family interventions that fit with the theoretical model of coping and adaptation. Education programs often include knowledge, skills development and emotional support. Support groups focus on a discussion of challenges, solutions and information exchange through a semi-structured sharing and caring format rather than a defined curriculum (Pickett-Schenk, 2003). Although both education programs and support groups have been found to, increase family members knowledge of mental illness and available services, enhance problem-solving ability and relationships, and, reduce isolation and improve wellbeing, the focus of this literature review is on education models only (Pickett-Schenk, 2003). Mental Illness and Family Psychoeducation Family psychoeducation was developed in 1980 and represented a significant shift in thinking that recognized the caring and supportive role of family members rather than viewing them as the cause of mental illness (Bertrando, 2006) and that families can help recovery (McFarlane, Dixon, Lukens, & Lucksted, 2003). Psychoeducation is defined "as systematic, structured, didactic information on the illness and its treatment, and includes integrating emotional aspects in order to enable the participants-patients as well as family members-to cope with the illness" (Rummel-Kluge & Kissling, 2008, p. 169). Although there are a variety of psychoeducational programs designed and led by professionals and Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. primarily concerned with consumer outcomes, Bertrando (2006) identifies six common principles that guide psychoeducation including not blaming for mental illness, recognizing that mental illness is serious and persistent and that medication is critical to recovery and the importance of information to family members' coping skills. Bertrando (2006) also notes that psychoeducation interventions should be evidence based, and can be implemented by a variety of health care professionals. Family psychoeducation is grounded in the theory of expressed emotion and is only one part of an overall treatment plan primarily concerned with improving consumer outcomes (Johnson, 2005). Principles of working with families are supported by research and include providing emotional support, education, resources and problem-solving skills (Dixon, McFarlane, Lefley, Lucksted, Cohen & Falloon, et al., 2001a). Family psycho­ education can include both educational and therapeutic components including family education, support, therapy, crisis intervention, and family treatment (Hugen, 1993; Solomon, 1996). Educational material is typically presented by professionals and supplemented with therapeutic skills development over an extended period of time with a goal of reducing relapse in the patient (Solomon, 1996). Family psychoeducation is not always offered to family members because the role of families is not always valued and because of the additional resources required to implement family interventions. Lehman as cited in Bertrando (2006, p. 17) observed that "psychoeducation tends to disappear 'on the way to the clinic'" and Mullen et al. (2002, p. 227) agree, "family interventions ...are not necessarily viewed as being part of routine clinical practice." There is plenty of research to support psychoeducation as evidence based best practice (Lucksted & Dixon, 1999; Marsh & Johnson, 1997; Moore, 2005). Lucksted Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 28 and Dixon (1999) assert that although there has been ample study on the effectiveness of family psychoeducation, there has been limited research on the efficacy of family education. Dixon, L et al. (2001a) argue that further research is needed to first identify barriers to the implementation of psychoeducation and second explore the integration of family psycho education with current psychosocial interventions that will lead to the development of strategies to introduce and sustain family psychoeducation. Bertrando (2006, p, 17) is less diplomatic in suggesting that perhaps because psychoeducation is derived from a biological theory of schizophrenia, the intervention may be "essentially useless." Today the biopsychosocial model of mental illness offers a more comprehensive approach to the research and design of suitable interventions (Mullen et al., 2002). The vulnerability-stresscoping model, "with its assumption of a biopsychosocial cluster of causes" is internationally recognized (Bauml, Frobose, Kraemer, Rentrop and Pitschel-Walz, 2006, p. SI) and locally implemented. "The principles of psychosocial rehabilitation form the philosophical foundation for all best practices in mental health" (Ministry of Health and Ministry Responsible for Seniors, 2000, p. 2). Dixon, L., Lucksted, et al. (2004) agree with Hatfield (1990) and Solomon (1996) that given the barriers to the implementation of professional family psychoeducation, limited health care resources, and the growing demand for family interventions, a more practical and sustainable option may be peer family education. Johnson (2005) and Bertrando (2006) argue that a combination of self-help and a variety of therapeutic interventions may be more beneficial to families affected by mental illness. Unfortunately, our current health care system, particularly in northern rural and remote communities, is unlikely to acquire the human and financial resources to implement or sustain this ideal and comprehensive Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. integration of family interventions for mental illness. BC mental health reform best practice (Ministry of Health et al., 2005) suggests that investing in training opportunities and resources to support self-help are a cost-effective strategy to support family members and their ill relative. Mental Illness and Family Education Family education has evolved as a more sustainable alternative to family psycho­ education in opposition to the concept of expressed emotion and to address the needs of family members. Family education is based on the trauma theory of stress, coping and adaptation with a goal of improving family member outcomes and operates independently of any treatment plan for the patient (Solomon, 1996; Le Gacy, 1998) and does not rely on mental health professionals (Johnson, 2005). Families experience both burden and resiliency because they need to continually make adjustments to accommodate the episodic nature of mental illness in order to effectively cope (Scheyett, 1990; Solomon, 1996). The goals of family education are focused on family outcomes that include reduced stress and burden, and improved coping skills and quality of life. Family education programs can be taught by peers in an individual or group setting and often include support, education and skills training components including advocacy (Le Gacy, 1998; Burland, 2001). Le Gacy (1998) argues that families need both head and heart knowledge to learn about mental illness and to process their feelings of loss and grief. Doka, as cited in Le Gacy (1998, p.137), went even further to suggest that families affected by mental illness experience "disenfranchised grief because their loss is not openly acknowledged, publicly mourned or socially supported." And, MacGregor as cited in Le Gacy (1998, p. 137), says that "grieving is a social event; grief work cannot be done in isolation." Le Gacy (1998) then argues that supportive family Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. training that works through the heart leads to healing for family members affected by mental illness. "When emotional issues surface in the classes, teachers need to be comfortable offering guidance, rather than listening and reflecting back as a therapist might" (Le Gacy, 1998, p. 139). This is where a family member teacher can share their personal experience in ways that a service provider could not. The two family education programs that have received attention in the research literature are the Journey of Hope (JOH) program implemented by the National Alliance on Mentally Illness (NAMI), a family advocacy organization in the United States and later the Family-to-Family Education Program (FFEP). The JOH program was written in 1990 by Dr. Joyce Burland, a family member trained as a certified family education specialist and by Dr. Agnes Hatfield, a respected researcher and family member (Burland, 2001). The Journey of Hope program continues to be offered in some parts of the United States and the Familyto-Family Education Program was adopted by NAMI in 1998. In 2006, Pickett-Schenk, Cook, Steigman, Lippincott, Bennett and Grey (2006a, 2006b) published two studies looking at the effectiveness of the JOH family education program with an emphasis on positive family outcomes. According to Pickett-Schenk et al. (2006), the research is beginning to recognize that both formal and informal support help family members cope with mental illness but more research needs to examine the benefits of family-led education like JOH and Strengthening Families Together. "Social learning and support theories suggest that interactions with instructors and classmates who are peers (i.e., other family members) and who share similar experiences enhance family-led education program participants' well-being and strengthen their ability to manage illness-related problems" (Picket-Schenk et al, 2006b, p. 1044). Both studies (Pickett-Schenk et al, 2006a, Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2006b) found that the JOH family-led education program significantly improved caregiving satisfaction and family member psychological well-being and that these results were maintained over time. A pilot study on the effectiveness of the FFEP was lead by Dr. Lisa Dixon in 2001. In 2004, the same researchers continued their study of the FFEP with a more controlled evaluation of the effectiveness of the family education program and hypothesized that participation in the program would decrease burden and increase empowerment. Researchers found that the FFEP successfully achieved its goals to reduce subjective burden, increase empowerment, increase knowledge of mental illness and the mental health system, and increase self-care among participants (Dixon et al., 2004). The 2004 study concluded that the addition of qualitative methodology would enhance quantitative findings (Dixon, et al. 2004). Dr. Lisa Dixon began a four-year study of the FFEP in 2005 to expand the evidence base for the intervention. As part of this study, the researchers are also investigating the impact of family participation in the FFEP on the patients. Research on the FFEP demonstrates a gradual building of knowledge that began with a pilot study and has evolved into the current longitudinal study that is looking at both family and consumer outcomes. At the time of conducting this literature review there were no articles on the 2004 to 2008 study of the FFEP. The shared unique features of the JOH and FFEP family interventions including peer family member teachers and a focus of the curriculum on consumer recovery may explain in part the success of these family-led education programs (Pickett-Schenk et al., 2006a, 2006b). Pickett-Schenk et al. (2006a, 2006b) note that improved outcomes were also observed among the control groups and that significant changes among participants in family Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. education programs may be accelerated by the intervention. This change in the control group is called "continued maturation in which families' ability to cope with their relatives' mental illness naturally increases over time" (Pickett-Schenk et al., 2006a, p. 552). At the time of writing this thesis, the Canadian Strengthening Families Together (SFT) family education program had not yet been the subject of any empirical studies. A pilot study of the effectiveness of SFT was important for "emerging research establishing family-led educational interventions as an evidence-based practice" (Pickett-Schenk, 2006b, p. 1049). The current SFT study also presented an opportunity to look at both the burden of caregiving and the resiliency of families affected by mental illness. The FFEP was offered in British Columbia from 1998 to 2005. The new Canadian Strengthening Families Together (SFT) family education program was implemented nationally and formally adopted by the BC Schizophrenia Society in 2005. The first SFT teacher training event for family members living in northern British Columbia was held in the spring of 2005 and the first family education programs were conducted in Prince George in the fall of 2005 with the release of the SFT second edition. There has been limited empirical research conducted on family education interventions and none on the new Canadian Strengthening Families Together (SFT) 2005 edition. The limited research that has been done suggests that family outcomes need to align with the goal and objectives of the program to measure improvement (Dixon et al., 2001a; Soloman, 1996)). The broad goal of the Strengthening Families Together (SFT) family education program is to provide support, education and coping skills. Support is provided to families through discussion of daily challenges and the opportunity to connect with other family members. SFT provides reliable and consistent information about mental illness, Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. treatment options, causes, research, and available mental health services to increase awareness of mental illness and to diminish the stigma attached to diagnosis. Families participating in SFT are introduced to problem-solving, coping, advocacy and communication skills. SFT has teaching outlines and participant handouts for ten sessions including, i) What is Mental Illness?, ii) Schizophrenia, iii) Mood & Anxiety Disorders, iv) Coping as a Family - Part 1, v) Coping as a Family - Part 2, vi) Treating Mental Illness, vii) Understanding the Mental Health System, viii) Mental Illness, Addictions, & Criminal Justice, ix) Living with Mental Illness and x) Striving for Change: Advocacy (SSC, 2005). Strengthening Families Together (SFT) is an example of a family education program designed to provide families with "Canadian-based information on the topics associated with living daily with a mental illness" (Schizophrenia Society of Canada, 2005, p. 5). The SFT family education program is available nationally and can be adapted to meet the unique needs of families at the local level by incorporating local resources. Although, all SFT family education program materials are included in a manual to encourage peer family members to teach the program, there is an ongoing debate about the need for actual teacher training. Currently there is no established orientation and training protocols for peer family members to teach SFT. SFT program materials include implementation guidelines and teaching outlines and handouts. Implementation guidelines include, i) program outline, ii) teaching requirements and tips iii) planning and implementation ideas, and iv) reporting requirements. Teaching outlines and participant handouts are provided for each of the ten sessions The Standing Senate Committee on Social Affairs, Science and Technology (2006) argues that in the absence of adequate professional services and to enhance recovery, families and people living with mental illness are advocating for more self-help and peer support. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. The Committee (2006) goes on to suggest that this will require building capacity among peers and research into the benefits and savings of self-help and peer initiatives. The Committee (2006) also acknowledges that this will require support from government including education and training plus technical and financial support. In exploring the experience of caregiving in rural areas, Kohn-Wood and Wilson (2005) go even further to suggest that professionals need to collaborate with families to enhance the continuum of available services. In northern rural and remote communities, where population is sparse and resources limited, interventions need to accommodate a broader population to ensure sustainability. The SFT family education program is not diagnosis specific and includes a core curriculum that can be easily modified to meet the needs of a broad range of individual participants. This supports the need to assess the effectiveness of the SFT family education program in a northern rural and remote community. Schene, Tessler, and Gamache (1994) suggest that the selection of measurement instruments for research should be guided largely by the purpose of the study but also needs to consider available time, researcher experience and research methods. Researchers may use a mixed methodological approach to enhance the validity of their research findings (Rubin & Babbie, 2005). The purpose of the SFT research study is to assess the effectiveness of the family education program. Schene et al. (1994) go on to suggest that the selection of any measurement instrument begins with how the variables are conceptualized. The family experience of mental illness is now recognized to contain both challenging and rewarding aspects. The SFT research study looked for changes in family burden and resiliency after participation in SFT and hypothesized that participants in the family Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 35 education program would experience a decrease in burden and an increase in resiliency following participation in SFT. A qualitative methodological approach using open-ended questions and inductive reasoning would capture a holistic picture of the family experience. In addition, I added a quantitative questionnaire before and after participation in SFT to substantiate qualitative findings. The literature suggests that measurable outcomes be tied to the program goal and objectives to measure program effectiveness (Sherman, 2003). The broad goal of the Strengthening Families Together (SFT) family education program is to provide support, education and coping skills. SFT objectives are, i) to provide opportunities for support and connection, ii) to increase knowledge of mental illness and awareness of mental health services, iii) to address stigma, and iv) to build confidence with communication, problemsolving, coping and advocacy skills. Johnston (2007) distinguishes between program outputs and participant outcomes. In the SFT study, program outputs are the program goal and objectives. The participant outcomes I selected to measure SFT effectiveness were family burden and resilience. Saunders (2003) and Pickett-Schenk et al. (2006a) argue that a strength focused approach in research and practice that shifts from only looking at the negative aspects of caregiving to recognizing and including the positive caregiving experience may empower families further. This study of the SFT family education program built on past research by integrating current knowledge of the family experience of burden and resilience and successful family education interventions. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 36 Chapter Four Methodological Strategy The literature does not agree on the benefits of using mixed methodology to improve the rigor of a research study. However, Wiener, Pritchard, Frauenhoffer and Edmonds (1993) present a convincing argument for combining "quasi-experimental" quantitative and qualitative methods in outcome evaluations like the SFT study. Ethical considerations did not allow the researcher to withhold the SFT intervention from family members to create a control group. Wiener et al. (1993) suggest that to balance practicality with rigorous evaluation, the researcher should consider a methodological approach that includes a variety of strategies. "If convergences across disparate perspectives and methodologies is found, then the consensus that is reached is more likely to be 'true' despite the conflicting irrelevancies that the consensus is based on" (Wiener et al, 1993, p. 491). The SFT study based the selection of a mixed methodological approach on the argument presented by Wiener et al (1993) to enhance rigor. Silverman (2005) suggests that the development of a methodological strategy has a series of seven components. I have used Silverman's (2005, p.100) model see Table 1, below to summarize the methodological strategy used in the study of "Mental Illness and Strengthening Families Together Family Education Program: Impact on Burden and Resilience. A Pilot Study." The methodological strategy provided the context necessary for the researcher to then detail selected research methods and design. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 37 Table 1 SFT Methodological Strategy Model Concepts Theory Hypotheses Methodology Method(s) Findings Matrix Logic Model SFT Family Education Program Family Burden and Resiliency Trauma Theory of Stress, Coping and Adaptation SFT reduces family burden SFT increases family resiliency Single Case Study with Multiple Units Quantitative Pre/Post Questionnaire Qualitative Pre Interviews and Post Focus Group Pattern-Matching Revise Hypotheses The following sections will discuss the model, concepts, theory and hypothesis used in the SFT project. Clarity in each of these components led to the development of a methodological approach to address the research questions. Models, concepts and theories are selected to help the researcher conduct a study in a particular way (Silverman, 2005). "They can never be disproved but only found to be more or less useful" (Silverman, 2005, p. 99). In the following discussion of model, concepts and theory I argue why each selection is useful to the study of the Strengthening Families Together family education program. Model Mason (2005, p. 30) suggests that a discussion of methodological strategy needs to begin with an explanation of the model the researcher uses to look at reality and "the logic by which you will go about answering your research question." Chovil (2006) recommended considering the logic model as a useful tool for program evaluation. The Health Communications Unit (2001, p. 2) supports the argument that "logic models guide the development of program evaluations." The Health Communications Unit (2001, p. 2) also Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. cites several benefits of using the logic model that are pertinent to program evaluation including providing a template for evaluation design and the identification of success indicators. Donabedian developed the matrix model cited by The Alberta Mental Health Board (2002). The Board (2002) considers this the gold standard logic model suitable for most evaluation projects and states that it is particularly suitable for novice researchers because of its relative simplicity. Table 2 illustrates the components of the matrix model developed by Donabedian and expanded to include the service level added by Tansella and Thornicroft as cited by The Alberta Mental Health Board (2002). I have added details of input, process and outputs at the client level to demonstrate how this model can be used to clarify the focus of measurement for an evaluation of SFT. Johnston (2007) adds a fifth column to the matrix logic model to distinguish between program outputs and participant outcomes. In the SFT study, program outputs are the program goals to provide support, education and coping skills and program objectives, i) to provide opportunities for support and connection, ii) to increase knowledge of mental illness and awareness of mental health services, iii) to address stigma, and iv) to build confidence with communication, problem-solving, coping and advocacy skills. The participant outcomes I selected to measure SFT effectiveness are family burden and resilience. By separating output and outcome I was able to include recommendations for improvement to the SFT at both the system and program levels in addition to including SSC and BCSS participation during the input phase of the evaluation project. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 39 Table 2 SFT Matrix Logic Model Service Level Input Phase Process Phase Output Phase Outcome Phase Population System ssc N/A N/A N/A N/A N/A N/A Recommendations BCSS BCSS Regions Family Teachers SFT Manual N/A Family Participants SFT Program N/A Support Education Coping Skills Recommendations Decrease Burden Increase Resilience Program Client Concepts "Concepts offer ways of looking at the world which are essential in defining a research problem" (Silverman, 2005, p. 98). Concepts are ideas derived from a given model (Silverman, 2005). The matrix logic model includes four components of any health service including the inputs, the process phase, program outputs and participant outcomes. Each of these components can be found at the population, system, program and client level. The effects or impacts of services on participant outcomes can include "improved clinical condition, functioning, quality of life and client satisfaction" (Alberta Mental Health Board, 2002, p. 3). By using the matrix model I was able to clearly illustrate the focus of measurement for the SFT study at the client level. In this way I was able to stay focused on collecting data from individual clients and measuring changes in the selected variables of burden and resiliency following participation in the Strengthening Families Together family education program. "The matrix model provides a simple yet comprehensive way to conceptualize any evaluation project" (Alberta Mental Health Board, 2002, p. 4). Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 40 Theory Theory is "a set of concepts used to define and/or explain some phenomenon" (Silverman, 2005, p. 98). Gubman and Tessler (1987) presented three theoretical perspectives that dominated the early research on mental illness in families detailed in the previous literature review; i) psychoanalytical, ii) expressed emotion, and iii) family experience. Rungreangkulkij and Gilles (2000) argued for a Family Resiliency Model to support the study of the entire family. Unfortunately, the complexity of this model made it difficult to isolate variables for study and was beyond the scope of the Strengthening Families Together family education program study. The SFT study uses the trauma theory of stress, coping and adaptation recommended by Hatfield (1990) and more recently by Solomon (1996) in the study of families living with mental illness. Burland (2001) also * uses the trauma model in the Family-To-Family Education Program (FFEP) to describe the emotional stages and practical needs of families affected by mental illness. Tusaie and Dyer (2004) argue that the theory of coping and adaptation is well suited to any study that includes resiliency because it allows for a broader more holistic focus that includes a look at strength and growth within adversity. This theory views a family's positive and negative actions and reactions as coping strategies to the episodic and persistent nature of mental illness (Lefley, 1989). Hatfield (1990) argues that although stress is ubiquitous, the theory of coping and adaptation provides the best framework to explain a family's unique experience of dealing with a catastrophic event like mental illness. Hatfield (1990) recommends using the theory of coping and adaptation as the conceptual approach to explore, describe or explain the family experience of living with mental illness. "The theory of coping and adaptation starts with the assumption that all Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 41 living systems strive to maintain themselves in their environment, to overcome obstacles, and to achieve autonomy and self-determination" (Hatfield, 1990, p. 20). In this context, coping refers to adaptation in response to a very challenging situation. Trauma theory argues that all people have the capacity to master change and achieve competency. Hatfield (1990) suggests that families need problem-solving skills, education and empowerment to achieve change and competency. Hatfield (1990) argues that families dealing with mental illness experience trauma and must cope by adapting new behavioural solutions to deal with the uniqueness, duration and frequency, pervasiveness and ambiguity of mental illness. Hatfield (1990) goes on to argue that the emotional impact of mental illness threatens self-esteem and self-worth, security, integrity and optimism, and a loss of the ill relative as they were before mental illness. The National Alliance on Mentally 111 (NAMI) adopted the trauma theory in the creation of the Family-To-Family Education Program (FFEP), which continues to be a leading example of evidence-based family education. Although, Rungreangkulkij and Gillis (2000) argue for the Family Resiliency Model in the study of the entire family system, they do acknowledge that the stress and coping framework is suitable for a study of individual family members. All of these arguments supported the use of the coping and adaptation theoretical approach in the; Strengthening Families Together family education study while still recognizing that there is no single best way to cope and adapt to the challenges of mental illness. Hypotheses Unlike models, concepts and theories, "hypotheses are tested in research" (Silverman, 2005, p. 99). This study proposed that participation in the Strengthening Families Together Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 42 family education program would reduce family burden and increase family resiliency, supporting the argument that SFT is an evidence-based best practice. The current research supports the argument that families go through predictable stages of emotional response to the trauma of mental illness and this determines what they need at the time (Burland, 2001; Mental Health Case Management Association of ON). However, the impact of serious mental illness on the family "will vary according to the context, the people and the situation" (Mental Health Case Management Association of ON). The NAMI Family to Family Education Program calls this the family burden. Burland (2001) describes the family members' feelings of guilt and grief as their subjective life burden. A family member's objective life burden addresses the real life responsibilities that caregiving imposes. Mental illness can impact family routines, family relationships, family resources and family identity (Mental Health Case Management Association of ON). Resiliency is defined as "the ability to rebound from adversity" by adapting to challenging circumstances and strengthening families (Marsh & Lefley, 1996, p. 2). Dyer and McGuiness (1996, p. 276) define resiliency as "hope embedded in adversity." Tusaie and Dyer (2004) go even further to suggest that resiliency is a combination of abilities and characteristics that allow an individual to bounce back, and cope successfully in spite of significant stress. Tusaie and Dyer (2004) add that in addition to these individual protective factors, environmental risk factors, like the lack of social support due to continued stigma and discrimination, might pose a greater challenge for families affected by mental illness. Resilience is not static and is maintained with a balance of individual protective factors and environmental risk factors (Dyer & McGuiness, 1996; Tusaie & Dyer, 2004). It was beyond the scope of the SFT study to look at all the aspects of the family experience. The focus of Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 43 this study looked at the changes in family burden and resiliency among families following participation in the Strengthening Families Together family education program. Methodology Like models, concepts and theories, methodologies are selected on the basis of usefulness (Silverman, 2005). I have elected to use case study to assess the effectiveness of the Strengthening Families Together family education program. "The effects of community-based prevention programs have been widely investigated using case methodology" (Tellis, 1997, p. 4). Tellis (1997, p. 4) goes on to say, "case study evaluations can cover both process and outcomes, because they can include both quantitative and qualitative data." The case study method is particularly suited to an in-depth investigation that allows for more complete observation, reconstruction and analysis (Tellis, 1997). Tellis (1997, p. 5) goes on to say that case study gives the researcher a more "holistic understanding of cultural systems of action" and gives a voice to the "actors." The system of action in this study is the Strengthening Families Together family education program and the actors are families living in Prince George affected by mental illness. The study of the system of action needs to focus on one or two issues or variables (Tellis, 1997). In the SFT study, I chose to focus on family burden and resiliency among participants. Case study does not require a minimum number of cases nor does it require a random sampling process. Evaluation research typically relies on availability samples (Rubin & Babbie, 2005). Case study design can include a single case, for example a single SFT class. Within this single case, there are a number of units or people that can be analyzed as in the SFT study. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 44 The ability of case studies to generalize has been criticized. However, Yin cited in Tellis (1997) argues that there is a difference between statistical and analytic generalization. In a case study, generalization of results are made to theory not to populations. The analytic model proposes that a single case is acceptable if it meets the established goal and objectives of the study. Rubin and Babbie (2005) agree that single-case evaluation designs have a high degree of internal validity that can be tested for generalizability in replicated studies. Case studies have also faced criticism about the ability to maintain validity and reliability. Validity and reliability in case study methodology can primarily be achieved with the use of multiple sources of evidence through a triangulated research strategy (Tellis, 1997). Data source triangulation was achieved by gathering data from a number of participants in the single SFT case and using both quantitative and qualitative data collection: survey questionnaires provided quantitative data while individual interviews and a focus group elicited qualitative data. Case study components include design, conduct, analysis and conclusions with an emphasis on the development of protocols in study design (Tellis, 1997). Protocols detail an overview of the project, field procedures, case study questions and a guide for reporting (Tellis, 1997). "A study's external validity could be adequate even if it cannot be generalized to many other settings. A study must be generalizable to some real-world settings, and it must represent that which it intends to represent" (Rubin & Babbie, 2005, p. 336). There were a variety of methods that could have been used to conduct an assessment of the effectiveness of the Strengthening Families Together family education program. The case study boasts a strong set of protocols to enhance reliability and allows for generalization Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. with an established goal and objectives, availability sampling and the combined use of qualitative and quantitative measures. I selected case study methodology as a viable option to assess the effectiveness of SFT. Methods Like models, concepts, theories and methodologies, methods are selected based on usefulness (Silverman, 2005). Specifically, methods need to be selected based on the best fit with the selected methodological strategy. "Of special interest to practitioners is the trend toward using a case study approach that combines qualitative and quantitative methods while using single-case designs to evaluate one's own practice effectiveness" (Rubin & Babbie, 2005, p. 441). The work of William Nugent is cited in Rubin and Babbie (2005, p. 441) in the use of a "case study that combined qualitative methods and a single-case evaluation design" as an example of how a practitioner can successfully combine qualitative and quantitative methods to assess the impact of their practice. The primary research method Nugent used for his study was quantitative data gathered from a client's self-reports during treatment. Nugent conducted qualitative interviews before and after treatment "to buttress his quantitative findings" (Rubin & Babbie, 2005, p. 442). It is interesting to note that Nugent's qualitative interviews identified aspects of treatment that were most helpful and changes the client had made. Rubin and Babbie (2005) suggest that these findings would not have been discovered without the additional use of qualitative methods. Pattern matching in qualitative analysis "attempts to assess an overall model of explanation by matching a pattern of predictions to a pattern of observations" (Northey et al. 2005, p. 97). Further, pattern-matching is a process used to relate the actual data to the predictions and to decide whether there was an effect or no effect (Cao, 2007). Pattern Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. matching in pre and post test designs means there must be changes in the dependent variables only after changes in the independent variable. The SFT study used a pre and post test design that asked how burden and resiliency change following participation in SFT and proposed that there would be a decrease in burden and an increase in resiliency following participation in the family education program. Northey et al. (2005) acknowledge that although we cannot measure an exact amount of change, the researcher can note whether a change has occurred. Pattern-matching data analysis is recognized as one approach to improve the internal validity of evaluations that use mixed methodology (Wiener et al, 1993). Typically, patternmatching begins with predictions that assume that the program is effective and both methodologies must support this outcome to be considered tenable (Wiener, et al, 1993). Secondly, the researcher assumes the program is not effective and constructs opposing predictions. Only then is the data collected and analyzed to "compare the observed patterns with those predicted under condition of success and failure" (Wiener et al., 1993, p. 491). The researchers' conclusions are then based on the 'goodness of fit' between the predicted patterns and the outcomes. Wiener et al. (1993) also suggest that the more complicated the predictions the better the goodness of fit and the greater the internal validity of the results. Wiener et al. (1993, p. 491) go even further to suggest that pattern-matching could be considered quasi-experimental because it also uses "the logic of ruling out plausible rival hypotheses." "Pattern-matching has been portrayed to have an essential role in case study research" (Cao, 2007, p. 446). Yin, as cited in Wiener et al. (1993), suggests that the real-life setting and variety of sources of data available in case studies including quantitative surveys and Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. personal interviews, makes the SFT case study suitable for combining methodologies and using the pattern-matching approach. Pattern-matching works much the same way in case studies with predictions made about the outcomes and several types of data collected to test the predictions. However, Yin as cited in Wiener et al. (1993), says that for evaluations like the SFT study, the program is assumed to be effective and only successful predictions are matched to observed patterns using the 'goodness of fit' criteria. Internal validity is strengthened when the predicted pattern matches the observed pattern and the predictions are more complex (Wiener et al., 1993). "The burden falls to the critic to come up with alternative explanations (plausible rival hypotheses) that could explain the observed results" (Wiener et al., 1993, p. 492). The SFT pilot study only looked at broad patterns of change in burden and resiliency in family participants. Future studies could enhance internal validity further by considering more complex predictions of success and effectiveness of SFT including consumer outcomes. Based on the research of successful family education interventions in mental health certain types of change, or patterns, in participants could be expected following participation in the SFT family education program; these include increased empowerment, decreased worry and burden, understanding of mental illness and the mental health system, increased knowledge of mental illness and better self care. Following a review of the literature I hypothesized, or predicted, that family participants would experience a decrease in burden and an increase in resiliency following participation in the SFT family education program. If the actual results match the prediction, called pattern-matching, then conclusions about the effects of the SFT family education program might be plausible (Cao, 2007). Alternately, if the actual results do not show the patterns predicted then the hypothesizing of SFT effects Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 48 may have to be questioned (Cao, 2007). By examining the proposed changes, in this case burden and resilience following participation in SFT, conclusions about whether there is an effect or no effect can be drawn. Yin, as cited in Cao (2007), stipulates that there are five components of case study research; from the opening research questions and propositions, to the detailing of the units of analysis, logic linking data to propositions, and finally discussing the criteria for interpreting the findings. To review, the SFT study asks what is the individual experience for family members affected by mental illness and does burden and resilience change following participation in SFT. I proposed, or predicted, that there would be a decrease in burden and an increase in resiliency following participation in SFT based on the trauma theory of stress, coping and adaptation. The researcher will be more confident that any relationships proposed among concepts are plausible if there is a continuous interplay between data collection, analysis and theory (Rubin & Babbie, 2005). Cao (2007) argues that components of case study research are linked to patternmatching. First, theory is the basis of the predicted pattern of events. In the SFT study, the trauma theory of stress, coping and adaptation links the family experience data to the propositions of decreased burden and increased resiliency. "These proposition can act as a series of benchmarks against which actual data are compared" (Cao, 2007, p. 446). After the case study data was gathered, patterns in the data were compared with predicted patterns based on the predefined criteria. Secondly, although not applicable to the SFT exploratory and descriptive study, internal validity is strengthened with pattern-matching in explanatory or causal case studies (Cao, 2007). Thirdly, in pattern-matching the concepts of burden and resilience are clearly operationalized using the four steps for concept analysis recommended Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. by Dyer and McGuiness (1996) to make meaningful comparisons between predicted and actual patterns of change. The four steps for concept analysis used in this study were; i) identify uses of the concept, ii) determine attributes of the concept, iii) construct a model to illustrate concept, and iv) define antecedents and consequences of concept. Burden was the term used almost exclusively to describe the entire experience of caring for someone living with mental illness until fairly recently (Glanville & Dixon, 2005; Ohaeri, 2003). "The term 'burden' simply means the negative impact of illness" (McGuire, Wells, Bruce, Miranda, Scheffler, Durham, Ford & Lewis, 2002, p. 179). Although, burden remains a significant aspect of the caregiving experience, researchers have discovered that there can be positive aspects of caring for someone affected by mental illness. These "emotional and cognitive transformations" will be dealt with in the next section on resiliency (Ohaeri, 2003, p.457). Family burden has been broadly divided into two categories; objective and subjective burden. "Objective burden refers to day-to-day practical problems such as constraints in leisure, social and work activities, loss of income, and disruption of family relationships and household routines. Subjective burden describes the negative psychological impact on the caregiver and includes feelings of loss, depression, anxiety and embarrassment" (Glanville & Dixon, 2005, p.16). There are also immense economic and personal costs associated with having a mental illness or addiction, however the focus of the SFT study is on the caregiving experience of individual family members affected by mental disorders. Tranvag and Kristofferson (2008) identify eleven burdensome aspects of the lived experience for partners affected by bipolar; fear, accusations, self-doubt, care and information, stigma, powerlessness, loneliness, anger and despair, persistent threat, health Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 50 problems, and grief. Mays and Lund (1999) focused specifically on the experience of male caregivers affected by mental illness and found men experienced burden primarily as objective financial strain and more subjective social challenges. Mays and Lund (1999, p.27) suggest that men "reduce the subjective experience of burden" with "more action oriented, persistent, and firm approaches than the nurturing, supportive approaches" reported for women to caregiving. A recent study by Stjernsward and Ostman (2008, p. 358), with a sample of both genders exploring and describing the experience of burden for a variety of family relationships and ages affected by depression, found that participants "expressed a feeling of not living their own life, struggling to balance relationships, adapting to and re­ evaluating their life circumstance and struggling to voice their ill relatives' and their own needs." Studies that considered the level of involvement of family members revealed that primary caregivers experienced more burden and resilience than caregivers with less contact (Harvey & Burns, 2003). As noted above differences in the experience of burden for caregivers can be found in the literature depending on their gender, age, family relationship, and level of involvement with the ill relative. In addition a relative's diagnosis and length of illness, which can affect the severity of symptoms, has been found to affect family burden (Roick, Heider, Toumi, & Angermeyer, 2006; Rossler, Salize, van Os, & Riecher-Rossler, 2005). Roick et al. (2006) and Rossler et al. (2005, p. 401) found a patients symptoms adversely affects family burden with "psychosis [was] ranked the third most disabling condition, higher than paraplegia and blindness, by the general population." The research also notes differences in family burden based on a variety of other demographic variables including socio-economic status plus regional and cultural differences (Chiu, Wei, & Lee, 2006; Johnson, 2000; Magana, Garcia, Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Hernandex, & Cortaz, 2007; Roick, et al„ 2006), which were not considered in the SFT study. In conclusion, "the burden on families range from emotional reactions to the illness, the stress of coping with disturbed behaviours, the disruption of household routine, the stigma they [family members] too are confronted with and the restriction of social activities, to economic difficulties" and each were considered attributes of burden in the SFT study (Rossler et al., 2005, p. 402). Dixon (2007) presents four models of understanding the family role in mental illness; i) mechanistic, ii) communications, iii) organismic and iv) biological. In the mechanistic model, it was believed that the family environment was responsible for mental illness in the family. Problems in communication among family members was considered the cause of mental illness in the communications model. In the organismic model, the family system enabled the "expression of dysfunction" or mental illness, which in turn affected family members (Dixon, 2007, p. 6). Today, the biological model recognizes that family genetics contributes to brain disorders. The original models of mental illness regarded family members as the problem and added to the burden of illness. The biological model used in the SFT study agrees that mental illness has a negative impact on other family members who experience both objective and subjective burdens. Family members experience trauma and stress and need support and education to cope and adapt. The antecedent to the experience of burden for those affected by mental illness is usually a combination of crisis and the ongoing episodic nature of symptoms. The negative consequences of burden have been noted above, however, research is beginning to reveal positive aspects of the caregiving experience for families affected by mental illness. The Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. following discussion considers the burden of mental illness as the necessary bridge to resiliency among family members. The concept of resiliency in family members affected by mental illness is relatively new in comparison to the concept of burden. Studies on resiliency in the 1980s focused on children raised by parents with mental illness. In the 1990s further study moved to look at resiliency in consumers and other family members (Mannion, 1996; Marsh & Lefley, 1996; Enns, Reddon, & McDonald, 1999). Research into resiliency among family members affected by mental illness continues with more recent studies expanding beyond the individual to look at resiliency in families and communities (VanBreda, 2001). The SFT study was interested in individual resiliency. The concept of resilience helps us understand why one person appears to "fall apart" from life's challenges yet another individual "bounces-back" even in the face of adversity. Resilience, "hope embedded in adversity" believes there is opportunity in every crisis (Dyer & McGuiness, 1996). The definition of resilience has evolved over time to reflect a dynamic process of successfully coping with and adapting to adversity. Definitions of resilience focus on family member strengths and hardiness to cope and adapt to adversity using internal and external resources (Greeff, Vansteenwegen & Ide, 2006). The process of resiliency is influenced by this combination of personal and environmental protective factors and competencies (Dyer & McGuinness, 1996; Greeff, Vansteenwegen & Ide, 2006). Although everyone has the potential to enhance resiliency, the presence of risk factors for some individuals may influence resilience. "Protective factors are defined as operating to protect those at risk from the effects of the risk factors" (Tusaie & Dyer, 2004, p. 4). Biopsychosocial risk factors increase the likelihood of negative outcomes and decrease Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. resiliency (Greeff, Vansteenwegen & Ide, 2006). Protective factors mitigate the influence of risk factors and increase an individual's ability to cope and adapt. Because, the balance between risk and protective factors is a dynamic process, resiliency in an individual can change depending on the situation (Tusaie & Dyer, 2004). The Resiliency Wheel (Henderson & Milstein, 2003) model illustrates protective factors that can wrap around an individual to reduce risk and improve resilience. Mitigating risk factors in the environment include an individual's life skills and their connections to others balanced with clear and consistent boundaries. An individual can build resiliency in the environment through care and support from others and by creating opportunities for meaningful participation while setting and communicating expectations. Resiliency is "a combination of abilities and characteristics that interact dynamically to allow an individual to bounce back, cope successfully, and function above the norm [and grow stronger] in spite of significant stress or adversity" (Tusaie & Dyer, 2004, p. 3). Resilience is reflected in our work performance, behaviour and psychosocial adjustment and our physical health and over time can vary and change in any one domain for any one individual (Tusaie & Dyer, 2004). Tusaie and Dyer (2004) suggest that individuals who exhibit resilience demonstrate, optimism, intelligence, creativity, and a sense of humour. They have a belief system that connects them with others while maintaining a sense of self. Tusaie and Dyer (2004) add that educational abilities and coping strategies also contribute to resiliency. In 1996 Dyer and McGuiness identified four critical attributes of resiliency including, rebounding and carrying on, a sense of self, determination, and a prosocial attitude. A sense of self refers to a balanced perspective on life that includes an appreciation and acceptance of events. Resilient Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. individuals are determined to deal with the challenges that they expect in life. Dyer and McGuiness (1996) suggest that positive outcomes from family interventions that correspond to the essential attributes required for resiliency include improved social and system supports, personal resources such as insight and self-reliance, and problem-solving skills. Tusaie and Dyer (2004) identify the two main environmental factors that influence resilience as social support and life events. Greeff, Vansteenwegen and Ide (2006) identified three characteristics found in resilient families including mutual dependence and the ability to work together, family members believe they influence and actively participate in outcomes, and change is normal and promotes growth. "This characteristic of family hardiness is the single attribute that was most clearly indicated by parents and children as being directly related to family resilience" (Greeff, Vansteenwegen & Ide, 2006, p. 296). Individual and environmental factors continue to be important to understand the concept of resiliency but the interplay between these factors and the outcome led to the development of models of resilience. Richardson's Resilience Process Model, as cited in Tusaie and Dyer (2004), suggests that when an individual's stability is disrupted their actions produce one of four possible reintegration outcomes; i) resilience, ii) homoeostatis, iii) loss, and iv) dysfunction. Other models have focused on individual family members and larger systems like families and communities. The Resiliency Model (Greeff, Vansteenwegen & Ide, 2006) has two phases to describe the process of resiliency. The first adjustment phase is when families make minor changes in functioning to cope with a stressful situation. Families make more fundamental changes to goal, rules, boundaries and patterns of functioning when the situation becomes a crisis and they move into the second adaptation phase (Greef, Vansteenwegen & Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Ide, 2006). The Resiliency Model (Greeff, Vansteenwegen & Ide, 2006) identifies three sources of critical support from individual family members and the family system, plus social support from the environment. According to McCubbin et al. as cited in Greef, Vansteenwegen and Ide (2006), the two most important resources for family members are cohesion and adaptability. Cohesion is "the bond of unit that runs through the family" and adaptability is "the capacity of the family to deal effectively with obstacles and change" (Greeff, Vansteenwegen & Ide, 2006, p. 288). Social support is seen as the most important element of adaptive coping for family members. "All models [are] consistent in identifying resilience as a dynamic process involving a personal negotiation through life and fluctuating across time, developmental stage, and context" (Tusaie & Dyer, 2004, p. 6). "The clearest descriptions and measurements of resilience today consists of a quantitative scale ... combined with a qualitative piece ..." (Tusaie & Dyer, 2004, p. 6). Given the definition of resiliency presented previously, an obvious antecedent to resiliency would be adversity itself (Dyer & McGuiness, 1996). In a more recent study by Tranvag and Kristoffersen (2008), they concur that the negative experiences of those affected by mental illness can lead to new understanding through the process of grief, acceptance and reconciliation. Dyer and McGuiness (1996) go on to say that at least one caring individual to validate a person's worth is needed help develop resilience during adversity. The primary consequence of resilience is effective coping in one challenging situation leading to a "hardiness" and ability to cope with future challenges more effectively (Dyer & McGuiness, 1996). Tranvag and Kristoffersen (2008) found that grief over loss in mental illness was the beginning of a healing process for family members. The journey of recovery moved family Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. members towards dawning acceptance and eventually coming to terms or reconciliation with the affects of mental illness (Tranvag & Kristoffersen, 2008). In conclusion, in this chapter I have detailed the methodological strategy presented by Silverman (2005) and used in the SFT study. I have described the model, concepts, theory, hypotheses, methodology, and methods used in the SFT study. In summary, I selected a methodology that combined quantitative and qualitative methods using a single-case design with multiply units and a pattern-matching data analysis approach. I used this combination of research methods and multiple sources of evidence using pattern-matching analysis to strengthen the validity and reliability of the study and to enhance the generalizability of the research findings. The findings that arose as a result of this process were then used to affirm or modify the hypotheses and make recommendations for change to the SFT family education program intervention to move it towards evidence based best practice. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 57 Chapter Five The Case: Strengthening Families Together In the previous section on methodological strategy, I provided the context for the SFT study and argued for the selection of a single case study design that combines quantitative and qualitative methods. In this section on research methods and design, I will detail the specific procedures and tools I used to assess the effectiveness of the Strengthening Families Together family education program. To begin, it may be important for future study to detail the changes that were made to the SFT curriculum to accommodate the needs of the participants. Variations to the SFT curriculum are encouraged and are both a strength, and a potential weakness, of the program. Flexibility in curriculum development is a strength because it can accommodate the unique needs of each new group of family participants and introduce new and current knowledge. Innovation and change becomes a challenge, and a possible weakness of the program, when the family education program peer teachers are not trained or experienced in teaching or group facilitation. The current SFT family education program does not have a teachertraining component. Strengthening Families Together is meant to be a self-directed family education program. In this study, the SFT teachers were not only peer family members but both were highly experienced in teaching and facilitation and confident in making adjustments to the curriculum to meet the needs of the group. The three main components of each session include lecture, discussion and activity. The most significant change was the extension of each session from the recommended two hours to two and a half hours to encourage full group discussion throughout the entire program, not just at the designated and time limited spots in the curriculum. This change Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 58 was made in response to the teacher's knowledge of previous participants' request for more discussion time. The remaining changes were made to the lectures and activities to enhance content and participant learning and are detailed in Table 3. Table 3 SFT Curriculum with Changes Session Topic 1 What is Mental Illness? Variations 2 Schizophrenia Add Consumer Story 3 Mood & Anxiety Disorders 4 Coping as a Family. Part 1 5 Coping as a Family. Part 2 6 Treating Mental Illness 7 Understanding the Mental Health System Add Consumer Story Delete Lets Review Activity Add Relative Group Activity Add Stages of Emotional Response Lecture/Discussion Add Reflective Responses Activity Defer Problem Solving Activity to Class 10 Add Spirituality Lecture/Discussion Add Medication Game Activity Add Service Provider Story 8 Mental Illness, Addictions, and Criminal Justice 9 Living with Mental Illness 10 Striving for Change: Advocacy Add Homelessness Lecture/Discussion Add Forensic Hospital Video Delete Lets Review Activity Add "Hot Potato" Suicide Discussion Add Problem Solving Activity from Class 5 Mental health consumer and provider guests were invited to share their experiences in the sessions on schizophrenia, mood and anxiety disorders, and understanding the mental health system plus a video of the criminal justice system was shown. The most significant change to the SFT curriculum was the addition of lecture and discussion on the stages of emotional response, spirituality, homelessness and suicide. The SFT teachers also added Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. participant activities to enhance learning including relative groups, reflective responses, and a medication game. Only two "Let's Review" activities were deleted from sessions three and eight and problem solving was moved due to lack of time from session five to session ten. It is interesting to note that experienced SFT teachers continue to make changes to the SFT curriculum and that these improvements were recently incorporated into the new 2009 SFT teacher training introduced in Prince George. Sampling I used availability or convenience sampling to select participants. Family members were selected based on their pre-registration in the SFT family education program in Prince George from September to December 2007 and their agreement to participate. Ten (10) family members pre-registered in SFT and eight (8) people agreed to participate in the study. One (1) family member did not start SFT after the pre-interview and an additional two (2) family members joined the class after the start of program leaving a total of seven (7) study participants in a class of eleven (11). Of the seven (7) study participants five (5) were parents and two (2) were partners. The study participants included two (2) males and five (5) females ranging in age from 40 to over 60 years. Participants had relatives living with psychosis (1) or bipolar (6) with some having dealt with mental illness for over ten years and others for less than one year. All participants were involved in the lives of their relative at least once a week to upwards of 24 hours a day. Attendance by study participants was consistent with everyone attending at least eight (8) of the ten (10) sessions. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 60 Quantitative Measures In addition to the qualitative pre interviews and post focus group, the researcher administered a quantitative questionnaire found in appendix D, using an attitude scale, before and after participation in SFT. Triangulation, or the use of a combination of quantitative and qualitative methods "deals with systematic error by using several different research methods to collect the same information" (Rubin & Babbie, 2005, p. 181). In addition, the use of pattern-matching analysis described in the previous chapter strengthens the internal validity of evaluation using mixed methodology when both methodologies support the predictions or hypotheses (Wiener et al, 1993). "When people cannot be assigned to control groups, time-series designs can help evaluate the impact of programs or interventions on groups of individuals" (Rubin & Babbie, 2005, p. 365). The treated group acts as their own control group when the dependent variables are measured repeatedly (Rubin & Babbie, 2005). Repeated measures are necessary to watch for extraneous factors that could account for changes in family burden and resiliency among SFT participants over time. I would argue that because SFT is a relatively short-term intervention, administering a quantitative questionnaire before and after participation provided adequate data for this pilot study. This replicates the procedure followed in the pilot study of the effectiveness of the Family-To-Family Education Program (Dixon, L., Stewart, et al, 2001). The SFT questionnaire used a Likert type scale that replicates the questions used to measure burden, worry, empowerment and self-care in the Dixon, L. et al. (2004) study on the outcomes of the Family-To-Family Education Program. The reliability and validity of the scale is discussed in the next chapter. This format offered a number of responses for each Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. variable that was then combined into a composite score for family burden and resilience. Attitude scales also give respondents a choice of multiple answers to each item to "capture the 'grey areas' of people's thinking" (Carter, 2001, p. 92). Qualitative Measures The qualitative component of the study included both audio-recorded individual interviews conducted before participation in SFT and an audio-recorded focus group conducted after completion of the program. Felker (2006, p. 6) suggests that interviews "encourage the participant to share stories and uncover meanings in their experiences and probes are specifically useful in this type of interview." To facilitate this process I began each interview with the open-ended question, "I am interested in your experience as a family member affected by mental illness and/or addictions. Can you tell me how your story began and what finally brought you to BCSS and the SFT family education program"? Moira as cited in Silverman (2005, p. 20) suggests that starting with this type of open-ended question allows "respondents to structure their own accounts" with "minimal interruption from the interviewer." The interviewer can then use probes to elicit detailed responses around the issues being investigated, in this instance burden and resilience. In addition to the probes introduced during the respondents story, pre interview questions that helped elicit discussion of family burdens and resilience included i) How has mental illness and/or addictions affected your life? ii) What are the hardest aspects of having a relative living with mental illness and/or addictions?, and, iii) What might help you cope more effectively with mental illness and/or addictions? Focus groups consist of participants "with similar backgrounds, who knew one another or had something in common" (Austen, Jefferson, & Thein, 2003, p. 5). "A Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. relatively speedy and inexpensive qualitative research method often used...for collecting other forms of program evaluation data, involves the use of focus groups" (Rubin & Babbie, 2005, p. 420). "The group dynamics that occur in focus groups can bring out aspects of the topic that researchers may not have anticipated and that may not have emerged in individual interviews" (Rubin & Babbie, 2005, p. 454). I would argue that because the purpose of the study is to not only assess the impact of SFT on family participants but to make recommendations for improvement, a combination of individual pre interviews and a post focus group helped achieve this goal. Rubin and Babbie (2005) agree that focus groups help generate more ideas for improvement as a result of group dynamics. Post focus group questions that helped identify any changes in family burden and resilience included: • How do mental illness and/or addictions continue to affect your life? • What continues to be the hardest aspect of having a relative living with mental illness and/or addictions? • What has helped you cope more effectively with mental illness and/or addictions? • What message about your experience with mental illness and/or addictions would you like to share withj i) NH mental health and addictions system, ii) SSC and BCSS, iii) general public, iv) family and friends and v) other family members living with mental illness and/or addictions. Rubin and Babbie (2005) caution that any measurement instrument used in single- case designs is susceptible to social desirability bias because of the small non-probability sample. In the SFT study, the researcher also had a professional relationship with participants as coordinator and co-teacher of the family education program. To reduce social desirability biases, I introduced the concept to the focus group and advised study participants Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. that their comments, both positive and negative, were important to ensure the best outcomes for any family member who participates in SFT in the future. All respondents' comments about the program, both positive and negative were fully recorded and included in the analysis and results. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Chapter Six Data Analysis Quantitative Analysis "Today, quantitative analysis is almost always done by computer programs such as SPSS" (Rubin & Babbie, 2005, p. 552). SPSS Version 15.0 statistical software was used to explore and describe the findings in the SFT study. Once the data was fully quantified and entered into the computer the researcher began quantitative analysis. Reliability and Validity In conversation, MacMillan (2008) suggested running the Cronbach's Alpha test to measure the reliability, or consistency, of the scales used in the study before other testing. Just a reminder that the scales for burden and resilience used in this research were drawn from a study of the Family-to-Family Education Program to draw on the teachings from previous research and to support future comparative research (Dixon et al, 2004). Table 4 summarizes the results of Cronbach's Alpha for reliability of the composite pre and post burden and resilience variables used in the SFT study. Table 4 Cronbach's Alpha Reliability Test Composite Variable Pre Burden Post Burden Pre Resilience Post Resilience Cronbach's Alpha .83 .89 .72 .52 Cronbach's Alpha Based on Standardized Items .82 .90 .78 .49 N of Items 16 16 14 14 The same items were used in both the pre and post questionnaires for burden and resiliency. Cronbach's Alpha reliability scores for pre and post burden items were Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. maintained at an acceptable value of .8. However, although pre resilience scores were less reliable at .7, there was a substantial drop in reliability to .5 for post resilience items. All post resilience items decreased .1 to .4 points. Because the same items were used for both pre and post resilience, the overall decrease in reliability may have been due in part to the small sample size or some other unknown factor contributing to the decrease in the reliability scores of resiliency following participation in SFT. Further development of measures of resiliency and testing of reliability in a large random sample would benefit future research. Although, it would be beneficial to conduct a factor analysis to determine the validity of the scale used in this study the sample size is not adequate. Field (2005) suggests that at least 10 to 15 participants per variable are required although other researchers suggest that much larger samples (N=300) are required to measure validity (Hurlburt, 2006). The 4-year study of the Family-to-Family education program currently being conducted is working with a much larger random sample and may be suitable for a factor analysis to determine the validity of the scale to enhance future research of family education programs. Field (2005) recommends that the first step in analyzing data is to explore it before determining which statistical tests are appropriate. Researchers agree (Field, 2005; Hurlburt, 2006) that data must meet four basic assumptions before parametric tests can be performed; data must be normally distributed, variances should be the same throughout the data, data should be measured at the interval level and data from different participants must be independent. The assumptions of interval data and independent measurements are gauged by common sense (Field, 2005). The researcher assumed that the measurements were independent and the measures of burden and resiliency were assumed to have equal intervals. Although, Field (2005) suggests the Levene's test to test for homogeneity of variance or the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. non-parametric alternative the Moses Extreme Reactions, neither test was necessary given the essential assumption of normality was not met in the following tests. There are a number of sophisticated tests for exploring the distribution of the data including Kolmogorov-Smirnov, Shapiro-Wilk and normal Q-Q plots but they were not necessary given the small non-random sample and the results that were found with the following standard frequency distributions and descriptive statistics testing. Normal Distribution The researcher followed the steps detailed by Field (2005) in exploring the distribution of the data and to check for normal distribution. The first step was the creation of a series of histograms to view the frequency distributions of composite pre and post burden and resilience variable data sets. Figures 1 to 4 on the following pages show a nonnormal distribution of data for each composite variable with no noticeable outliers. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 67 2.0 1.5- *•> C 3 O o 0.5- 0.0 40 35 45 50 CompositePreBurden Figure 1. Composite pre burden distribution with normal curve (n = 7). 2.0 1.5- 1 0.5- 00 J 1— I 36 40 ' V 44 1 48 CompositePostBurden Figure 2. Composite post burden distribution with normal curve (n = 7). Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 36 38 40 42 44 CompositePreResilience Figure 3. Composite pre resilience distribution with normal curve (n = 7). 2.0 • 1.5 • C 3 O 1.0 \ ~T~ 0.0 40 42 46 CompositePostResilience Figure 4. Composite post resilience distribution with normal curve (n = 7). Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 69 The second test the researcher applied to explore the distribution of the variables further was the creation of a table of descriptive statistics and boxplots for pre and post composite burden and resiliency scores. Table 5 describes the characteristics of the data including measures of central tendency, measures of variability, and measures of shape. The measures of central tendency include the mean, median and mode. Average burden scores declined by 2.57 and the mean resiliency scores increased by 2.58 following participation in SFT. Median scores for burden also declined from 43 to 39 and increased for resiliency from 42 to 45 following participation in SFT. Table 5 SFT Descriptive Statistics Composite PreBurden N Composite PostBurden Composite PreResilience Composite PostResilience Valid 7 7 7 7 Missing 0 0 0 0 Mean 42.86 40.29 41.71 44.29 Std. Error of Mean 2.109 2.347 1.459 .969 Median 43.00 39.00 42.00 45.00 Mode 35(a) 48 42 45(a) Std. Deviation 5.581 6.211 3.861 2.563 Variance 31.143 38.571 14.905 6.571 Skewness -.023 .259 -.670 -.692 Std. Error of Skewness .794 .794 .794 .794 Kurtosis -1.319 -1.750 .401 -.281 Std. Error of Kurtosis 1.587 1.587 1.587 1.587 Range 15 15 11 7 Minimum 35 33 35 40 Maximum 50 48 46 47 a Multiple modes exist. The smallest value is shown Measures of variability include range, standard deviation, and variance. The range of scores remained the same at 15 for burden but there was a decline in the range of scores for resiliency from 11 to 7 following participation in SFT. The sample standard deviation and variance "contain exactly the same information about the variation of a distribution" Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. (Hurlburt, 2005, p. 92). In both cases there was an increase in variation of distribution for burden and a decrease in variation for resiliency following participation in SFT. "There are two main ways in which a distribution can deviate from normal: (1) lack of symmetry (called skewness) and (2) pointyness (called kurtosis)" (Field, 2005, p. 8). A "distribution is skewed if one 'tail' (the side of a distribution) is longer than the other" (Hurlburt, 2006, p.41). Figures 3 and 4 on the previous pages illustrate that both pre and post resilience distributions are negatively skewed and the results in Table 5 confirm this with skew readings of -.670 and -.692 respectively. "The tail of a skewed distribution 'pulls the mean' in its direction" making the average and standard deviation less useful in describing the data (Hurlburt, 2005, p.67). In a perfectly normal distribution the values of skew and kurtosis are 0. Although, skew results for pre and post burden are within acceptable limits for normal distributions (Pre burden = -.023) (Post burden = .259), there is more chance of Type II errors or missing a result that is there, also called a false negative, because of the small sample size. The creation of a boxplot in Figure 5 identified an outlier in the composite preresilience scores. Outliers will also distort the measures of central tendency and variability and again make them less useful in describing composite pre resilience scores. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 71 50 JL 45 40 O 35 5 30 t : CompositePreBurden i r CompositePostBurden CompositePreResilience CompositePostResilience Figure 5. Boxplot of composite pre and post burden and resilience scores. In summary, an exploration of the data revealed a non-normal distribution of data for each composite variable. Descriptive statistics measured changes in central tendency, variability and shape for burden and resiliency. Finally, the boxplot in Figure 5 revealed an outlier in the composite pre resilience scores. Field (2005) acknowledges that corrections for distributional problems and outliers can be made to the data, however, he goes on to say that "a deviation from normality ... tells us that we cannot use a parametric test, because the assumption of normality in not tenable" (Field, 2005, p.96). Alternative non-parametric tests were more suitable to describe the data in this case study. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 72 Correlation "Correlation coefficient is the descriptive statistic that measures the degree of the relationship between two variables" (Hurlburt, 2006, p. 389). The non-parametric correlation test used in the SFT study was Spearman's rho. A correlation coefficient is based on pairs of data and in this study these pairs were different measurements performed on the same subjects. The SFT study was interested in the relationship between pre and post scores for burden and resiliency. The SFT study was not looking at the possible relationship between burden and resiliency, therefore no correlation testing was conducted with these variables. Scatterplots graph the relationship between two variables and are the first step in correlational analysis (Hurlburt, 2006; Field 2005). A scatterplot may help tell the researcher three things; i) whether there may be a relationship, ii) type of relationship, and iii) identify any possible outliers which can bias the correlational coefficient (Field, 2005). Hurlburt (2006, p. 391) suggests researchers look at "the slope and width of the imaginary ellipse that can be drawn around most of the points in the scatter diagram" to help determine strength of the relationship and whether it is positive or negative. Figures 6 and 7 are the scatter diagrams for composite burden and resiliency scores respectively. Using the concept of an imaginary ellipse on the burden data, Figure 6 suggests a positive relationship with a fairly narrow scattering of data suggesting a relatively strong relationship for pre and post burden (r positive). Using the same technique for resiliency data, Figure 7 again suggests a positive relationship however the data is more widely scattered suggesting a weaker relationship for pre and post resiliency scores. Figure 7 also identifies two possible outliers, one male and one female, which Field (2005) reminds us can bias the correlational coefficient. Further Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. correlation testing was needed to help describe the degree of the relationship between pre and post scores for burden and resiliency. 48-i c 0) XJ l_ Fenfsdmale 44- 3 m (A O 0L © Female 40^ W O a. P q Male | U 36-1 i Male Female i 35 i 40 Female i 45 i 50 CompositePreBurden Figure 6. Scatterplot of composite pre and post burden (r positive) Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Female Female a> o c 0) w a> 46 T S 44- <0 Female , Female Male o a. 0> '55 o g" 42- 1 Female O o 40- i 35.0 i 37.5 i 40.0 i Male 42.5 i 45.0 CompositePreResilience Figure 7. Scatterplot of pre and post resilience (r positive). The SFT study used Spearman's rho correlation coefficient as a suitable nonparametric test to measure any possible relationships between variables. "The most frequent hypothesis we wish to evaluate regarding Spearman's rho is whether it is significantly different from 0 - that is, whether our data are related at all" (Hurlburt, 2006, p. 406). A correlation coefficient of 1.0 is the strongest possible degree of relationship while 0.0 indicates no statistical relationship (Hurlburt, 2006). "A coefficient of+1 indicates that the two variables are perfectly positively correlated, so as one variable increases the other increases by a proportionate amount. Conversely, a coefficient of -1 indicates a perfect negative relationship: if one variable increases the other decreases by a proportionate amount" (Field. 2005, p.l11). According to Cohen as cited in Hurlburt (2006), the sample Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. size in the SFT study was not large enough to use the correlation coefficient as a measure of effect size. The second step in the correlational analysis was the running of Spearman's rho correlation coefficient using SPSS. The researcher began by looking for any relationships between the demographic variables and composite burden and resiliency scores. Table 6 shows a significant positive relationship between composite pre burden scores and the extent of involvement family members had with their ill relative, r = .78, p (two-tailed) < 0.05, although no cause and effect relationship can be assumed. There were no other significant relationships found between burden and resiliency and any of the other demographic variables tested including gender of participant, length of illness, relationship to ill relative, age of participant, and diagnosis. The study was primarily interested in any possible relationship between pre and post burden and resiliency outcome. There was a significant positive relationship found between the composite post burden scores and the composite pre burden scores, p - .847, df = 5 , p < 0.05 however, no cause and effect relationship can be established. The relationship between composite pre and post resilience scores was not significant, p = .324, df = 5,p< 0.05. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 76 Table 6 Demographic Correlations Age of participant Composite -.38 Preburden Composite -.29 Postburden Composite .15 Preresilience Composite -.43 Postresilience Diagnosis Extent of involvement Gender of participant Length of illness Relationship to ill relative .00 .77* -.16 .15 .16 .21 .36 -.16 .47 .24 -.43 -.22 .00 -.21 .00 .52 -.27 -.64 -.12 -.08 Wilcoxon signed-rank test Field (2005, p.534) and Hurlburt (2006) recommend the Wilcoxon signed-rank test as the non-parametric equivalent of the dependent t-test to measure change "in situations in which there are two sets of scores to compare, but these scores come from the same participants." The Wilcoxon signed-rank test is suitable for comparing the pre and post burden and resilience composite scores to measure any differences. Table 7 Non-parametric Descriptive Statistics Composite PostBurden N Valid Missing Composite PostResilience 7 7 Composite PreBurden Composite PreResilience 7 7 0 0 0 0 Median 39.00 45.00 43.00 42.00 Range 15 7 15 11 Table 7 shows that for respondents, burden levels were significantly lower following participation in SFT {Mdn = 39) than before participation in SFT (Mdn = 43), z = -2.23, p < .05. Six (6) of the seven (7) respondents reported experiencing less burden following participation in SFT. Only one (1) respondents' burden remained unchanged following Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. participation in SFT. No respondents experienced more burden following participation is SFT. However, for respondents resiliency levels were not significantly higher following participation in SFT (Mdn - 45) than before participation in SFT (Mdn = 42), z = -1.53, p < .05. Five (5) of the seven (7) respondents reported experiencing more resiliency following participation in SFT. Two (2) respondents experienced less resiliency following participation in SFT. The level of significance is the probability of making a Type I error or finding something when it is in fact not there also called a false positive (Hurlburt, 2006). Ethically the researcher needs to minimize the probability of Type I errors to reduce the possibility of harm to individuals and expense to the scientific community. According to Hurlburt (2006, p. 193) p = .01 or p = .05 are both "an acceptable probability of reporting Type I error results". The researcher also needs to consider the probability of Type II errors or missing something that is there also called a false negative. If the researcher were to use p = .10 then there would be greater probability of Type I errors and a decrease in Type II errors. The default level of significance for the Wilcoxon signed ranks test at p = .05 balances the need to minimize both Type I and II errors thereby reducing the potential human costs. The results of the quantitative data analysis supported the initial hypothesis with a significant decrease in burden following participation in SFT. However the results did not support the hypothesis that there would be a significant increase in resiliency after participation in SFT. The next step in the analysis was to compare these same predictions to the patterns of change found in the qualitative analysis. In this way the researcher linked quantitative analysis with the pattern-matching approach used in the following qualitative Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 78 analysis. In conversation, MacMillan (2008) added that quantitative analysis might provide the researcher with leads into the qualitative data. In addition to the significant decrease in burden and less significant increase in resiliency in participants following participation in SFT, the quantitative data also revealed an outlier with a low pre resilience score and two participants whose resilience decreased following participation in SFT. Analyzing the qualitative data with these quantitative results in mind provided the researcher with leads to help explore and describe the experience of burden and resilience for participants. Included in the pre and post questionnaires was a final open-ended question asking respondents for any comments they would like to add about how having a family member living with a mental illness and/or addictions has affected their life. These comments were included in the following qualitative analysis. Qualitative Analysis Table 8 summarizes the qualitative analysis and begins by placing the concepts of burden and resilience along a continuum of predictable stages and emotional responses detailed in trauma theory (Burland, 2001). The researcher used the broad definition of the concept of burden as describing the objective experiences and subjective feelings that describe the negative aspects of caring for someone living with mental illness. As suggested by Rubin and Babbie (2005), the researcher aligned the trauma theory of stress, coping and adaptation used in this study to the pattern matching analysis by starting with the three broad stages family members go through when dealing with mental illness (Burland, 2001); i) dealing with catastrophic events, ii) learning to cope and iii) moving into advocacy. Under these broad stages I added an additional series of predictable emotional responses family members experience when dealing with mental illness also included in the trauma theory Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. (Burland, 2001). Finally, I have added the family member experiences and feelings that emerged from the qualitative analysis in the SFT study under each of these predictable patterns. The concepts, stages, and emotional responses used in the pattern matching analysis along with a summary of family members experiences and feelings found in the data are summarized in Table 8. The opened ended question at the end of the quantitative questionnaire that asked respondents if they had any comments to add about how having a family member living with a mental illness and/or addictions has affected their life revealed common experiences and feelings among family participants. The pre-interviews expanded on these initial comments to provide the researcher with plenty of data to explore and describe the lived experience of family members affected by mental illness before participation in SFT. To further align with the trauma theory adopted in this study, the definition of resiliency as a dynamic process of successfully coping with and adapting to adversity in addition to describing the positive aspects of caring for someone living with mental illness that emerged from the qualitative analysis of data from the post focus group. Pattern matching analysis in evaluation studies like SFT assume the intervention is effective. Based on the review of the literature, the researcher predicted that participants would experience a decrease in burden and an increase in resiliency after participation in SFT. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 80 Table 8 Concepts, Stages and Emotional Responses in SFT Burden Dealing with Catastrophic Events • Psychosis • Suicide • Threats and Violence • Addictions • Police Intervention • Marital Break-up • Loss of Custody Resilience Learning to Cope Moving into Advocacy • Rights • Relapse Prevention and Crisis Planning • Voice • Ulysses Agreement • Information • Support • Inclusion • Communication and Problem-Solving • Limit Setting and Letting Go • Caregiving and SelfCare Anger/Guilt/Resentment Understanding • Knowledge (head) • Blame • Forgiveness • Empathy (heart) Crisis/Chaos/Shock • Crying and Laughter • Finances and Work • Perception and Recognition Language • Fear and Worry • Stigma and Discrimination • Loss Denial; 'normalizing' Hoping Against Hope Grief • Self • Relationships • Individuals Acceptance • Expectations • Hope Advocacy/Action • Individual • Systemic The following is a detailed description of the findings: Stage 1: Dealing with Catastrophic Events This stage under the concept of burden includes the predictable emotional responses of: i) crisis, chaos and shock, ii) denial and 'normalizing', and iii) hoping against hope. Under each of these headings is a description drawn from the data that captures the negative experiences and feelings family members affected by mental illness and addiction expressed before and after participation in SFT. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 81 Crisis/Chaos/Shock For many family members their introduction into the world of mental illness is often through crisis and the participants in this study were no exception, with family members faced with psychotic breaks, suicide attempts, threats and violence, addictions, police intervention, marital break-up and loss of custody. One participant commented, "that [mental health] crisis felt like it went on for a long time." He had a psychotic outbreak, we had to call 911 and it was horrible experience, horrible experience. She didn't want to live anymore. She 'd told me about ways that she thought of killing herself. She was suicidal. He was making threats, he was, he was violent, you know with all kinds [of] things that really frightened the girls. The literature review suggests that resiliency is built on the human experience of adversity. Dealing with crisis can be the force that leads individuals to learn to cope and adapt to adversity. The researcher found examples of resiliency described later in the analysis. Six of the seven family members describing the catastrophic events that were a part of the mental illness experience cried during the pre-interview while telling their story of how having a family member living with a mental illness and/or addiction had affected their life. One participant who had been dealing with mental illness personally and professionally for decades was surprised by the tears and commented, "obviously some unresolved emotion because look at how tearful I am." "I hope you have lots of Kleenex!" Another participant "panicked" when faced with mental illness for the first time and asked herself "what am I going to do, how am I going to deal with this?" Another family member echoed this sentiment and was "scared' and "didn't know how to handle it [mental illness]." The tears Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. that fell in the pre-interviews were replaced with laughter throughout the focus group discussion that followed SFT. One participant talked at length about the additional financial burden mental illness had placed on their family. "I think financially none of them are in great shape, which puts a little onus on me...so there's been some struggles there...here's my daughter that's sick and if she has too much money, will spend it all or she might go out and buy drugs. " Another family member acknowledged mental illness affected her work. "I'd be spending time on the phone at work talking with him over and over and over and then ending up leaving work and going home." There was no discussion of the affect mental illness had on finances or work following participation in SFT. Before participation in SFT participants often described their situation in negative terms. One participant repeatedly expressed the negative impact of mental illness by describing their situation as a "problem." "I want help with the problem" and "most family members feel that the problem is mine for having [the] child in [my] home." The use of language that conveys such negativity captures the early experience of burden for many family members affected by mental illness and addictions. Following participation in SFT there was a shift in how families described their situation that reflected a more positive perception of their experience in spite of the challenges. One participant captured the experience of many family members with"it is a journey learning about living with mental illness, with many ups and downs." Another family participant "wonder[ed] [if there is some] if language can be part of change" and asked "what would be appropriate?" The answer came from another participant; "I don't want to [be] known as my condition, lama person living [with] whatever" Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 83 Stigma and discrimination was a common thread of experience through family member stories. Stigma is a barrier we place on ourselves that in the case of mental illness often stops us from seeking help and talking about our experience. Discrimination is the barrier that is placed on individuals, family members and service providers working in mental health that threatens our human rights and our well-being. One respondent was surprised to learn that besides her newly diagnosed relative her "normal happy family" included a number of family members who had not revealed their mental health diagnosis because of the stigma and fear of discrimination. And, the newly diagnosed relative "was devastated" by the disclosure of her mental illness. Discrimination was evident even among professionals: There was a question in your questionnaire, do you think that [that] child is lazy? And I never ever thought that but so many people around me were telling me that. School psychologist had made statements, and made statements in front of a group of people with me there, to the effect that this child was in a, in a home and that was, it was the environment that was causing this behaviour. Another respondent with a long history of personal and professional experience was not immune to discrimination. They [Ministry] thought that there was just problems in the house! They didn't look at what could be happening with him which was kind of I, I, I mean a big part of the hurt in this whole thing for me is, is the Ministry involvement and, and how they handle this [mental illness]. Individuals living with mental illness have said that "the only thing worse than getting mental illness is having mental illness - that is, finding that you must negotiate your recovery in the face of monstrous discrimination" (Burland, 2001, p. 11.2). And, when asked what the hardest aspect of having a relative living with mental illness or addiction the answer was the same for some respondents in the study. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Probably the hardest is the non-acceptance by people out there ... make remarks, which are very hurting. They don't look at him as an individual who has got some disabilities. They just seem to think if you kick him in the rear end, it's going to change. They think ofbi-polar and they think of a crazy person is what they think of. So trying to explain it to a family member and [and] not have them think differently of her is very difficult. After participation in SFT stigma and discrimination was still the hardest aspect of dealing mental illness for some participants who found other people "pull away" because "they don't know'''' anything about mental illness and "don't talk about it" However, another family member found that when they did start talking more openly about mental illness they discovered more people affected by mental illness needing support. Ifeel stronger than ever before that talking about this [mental illness]..the way to get rid of the fear and the stigma and that you know is by raising awareness and educating people and I think we can all play a part in that. Denial and 'Normalizing' Two participants whose ill relative was also experiencing physical symptoms both struggled with denial because of the additional symptoms. "I'm going, maybe it's not a mental illness. So probably there is still a bit of denial for me." Hoping Against Hope In an effort to deal with the catastrophic event of a diagnosis of mental illness, family members often deny that anything has changed and try to normalize the situation in order to cling to the last vestiges hope. "Like most good things if you don't see it, you don't worry about it and I guess you know as time progressed, it seemed like she was getting better." Stage 2: Learning to Cope This stage falls under the concepts of both burden and resilience as family members transition from dealing with catastrophic events and begin to learn to cope with mental Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 85 illness. In the trauma theory of stress, coping and adaptation while learning to cope families move through another series of predictable emotional responses including; i) anger, guilt and resentment, ii) recognition, and iii) grief. Again, under each of these headings is a description drawn from the data that captures the mix of negative and positive experiences and feelings family members affected by mental illness and addiction expressed before and after participation in the SFT family education program. Anger, Guilt and Resentment Before SFT most parents and partners alike did not realize that their feelings of anger, guilt and resentment are normal predictable emotional responses to mental illness, not negative or bad emotions. And then through all of that [mental illness], anger, resentment, like that, you know and a lot of anger andjust like, like I know I love oh I don't like him at times, and, and then I'm like, how can I think that someone like you know when they can't help it. And, so then the guilt. And it was always laughter and when all of this [mental illness] happened the laugher stopped in our house. And it was really it was hard to see the kids struggling and I didn 't feel that I had the skills at the time to [to] really help them understand him you know. And to get past it and allow him to come back to our home. So, I carry guilt I carry a huge amount of, how I, what could I have done differently to have facilitated him coming back. Anger and resentment was not always directed towards themselves or the ill relative. As one family member found, inadequate response by the Ministry lead to harm and hurt feelings. It could have been really different. They could have, rather than ending up in crisis and ending up on the psych ward, his experience could have been very different. I have some resentment about that, have some real anger about that obviously, you know. If they had listened the first time, that would have been amazing, had they listened the second or third or fourth time, even thai would been you know, but to have messed with [him] for two years without the support that he needed. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 86 Family members often blamed themselves for their relative's mental illness and the failure of our education and health systems to adequately prevent and treat the individual with mental illness and support the family. Following SFT one participant stopped feeling guilty from blame and started healing with forgiveness. What I realizedfrom [SFT] is that I just, Jjust had never forgiven myself and made mistakes because I didn't have knowledge and what has come for me out of this [SFT] is that I have come to a place where I have forgiven myself for things that Ijust I didn't know any differently at that time but I know that I can be a good support. Recognition Before participating in SFT family members described feeling like they were walking on egg shells or "waiting for the [other] shoe to fair and not knowing what to expect next as "watching what we are doing with him so that we don't trigger, you know, something going on" or Not knowing what I was going home to, if 1was coming home to, you know, [a] hole in the wall or a smashed up chair or you know, my computer ripped out of the wall or the phones, you know, no phone.. .uncertainty is the hardest part. Another family member described the roller coaster ride known as living with mental illness and how it has affected their life in the following way: I don't know all that much about bi-polar other than the fact that I understand this teeter-totter that they are all on all the time. Consequently you, as a person who is living with them are also in this whirlpool right along with them. It's hard on you. I'll say in the last two years, I really have gotten older. Before participating in SFT, it was difficult for some family members to believe in their own capabilities and that of their ill relative. I couldn't even concentrate on my job because you know it just that [mental illness] seems to consume you. I can't do this anymore, I need to learn how to not pretend and how just be myself again and be who I used to be, no matter that he has an illness and like I, we can still do this, I can do this and I just don't know how I can right now. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. When you asked in the questionnaire do I still have fear for his future. Yah I do, because of the choices he makes, not because he doesn 't know where to get support. He's reckless, you know he's really, really reckless. Fear of the unknown and those things over which they have no control continued to worry participants even after participating in SFT. Family members were worried about lack of diagnosis and insight, ongoing addictions, episodic symptoms, possible suicide and fear of the future for their ill relative. One family member still felt like "they were living on the edge all the time" and "I don't think it matters how much I know about it [mental illness] it will always scare me. " Another participant found the hardest aspect of mental illness was that their ill relative does not"accept the fact that they have a mental illness" and they "don't follow through with their medications" yet continues to self-medicate with "addictions. " Although family members still worried about the future of their ill relative, one respondent qualified this by saying, "but it doesn't paralyse me -I can deal with it." Another family member also began to realize that "he is capable and makes choices in spite of living with mental illness." Family members are often surprised to learn that they feel denial, sadness, anger, fear and finally acceptance because they have experienced losses and are grieving. Once they have recognized the loss they can begin to process the grief (SSC, 2005). Before SFT one participant expressed their loss of self as ".. .take[ing] away the person you were before being involved [with ill relative] and "I was a very outgoing person had lots of friends, had lots of activities in my life but then that's gone." Another family member expressed the loss of a past because "/ feel like I'm starting to raise a family over again." Still another participant expressed a loss of time for themselves and the impact on other important relationships in their lives: Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 88 So we haven't gone away, we didn't do any holidays or anything and I still haven't. So that's my biggest roadblock at the moment, I don't want to leave her. I want to be there, there all the time for her. You've got other family members. You have to make sure you [are] still including them or spending enough time with them. Another respondent expressed the loss of custody of their ill relative and the impact on the entire family. The social workers made a decision that he had frightened the girls so much that he was not allowed back. And he wanted back, he wanted back to our family. And it was horrible, Kim, it was really horrible. It was really [a] hard time in our family because the boys really wanted their brother back. And the girls were just really scared of him so it was really hard on our whole family. Some family members recognized the loss and the need to regain what was lost to heal. "There is a trust lost so we have to rebuild that trust. And it's not a trust that she got sick, it's a trust that she did the drugs." And, because of the episodic nature of mental illness some participants experienced repeated ongoing loss. "He's not there and then the next day, I have a partner again. " After participating in SFT another participant was able to recognize a loss in their intimate relationship because "in the past 10 years we [husband and wife] have gone out alone together less than 30 times." Grief Before participating in SFT one participant felt that '''"there's a hurt there that just never really seems to hear even after dealing with mental illness for decades. They continued by asking: How do you go back, how do you go back to what our family could have been, you know? Because they [family] had been robbed of their brother. I didn't even realize how much it still is hurtful until last night when I was thinking about it. I would have liked there to have been some better closure. This same family member began to realize the need "to just, you know, put it [mental illness] out there and, and heal it." Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 89 There was one participant who expressed "sadness, upset, uncertainty ..." before participating in SFT and these feelings seemed to persist even after SFT with the heart wrenching sentiment that"there are times when the tomorrows of uncertainly (sp) create sadness." Although some participants had "pick[ed] up certain tools" from the lived experience family members were eager to learn how to cope with mental illness. "If I could believe that there is nothing that I did that caused this [mental illness] and if there's nothing that I can do to make it [mental illness] better, I could cope." Some participants were learning to cope through participation in the BCSS family support group but were still struggling with the concept of recovery and a reason to hope before participation in SFT. "We cope, I don't believe that it's better but we cope." One participant recognized the risk mental illness has on our own mental health as family members and the need to develop healthy coping skills. They went from being "very positive" before mental illness to feeling "worried, anxious, [and] embarrassed." I thought I was actually becoming depressed and not being able to cope with it [mental illness]. I was starting to not want to be leaving the house other than my job. And, Iwasn % I'm not, I'm well, I'm not enjoying life basically were and that's what brought me here [BCSS]. Because I know there's a way I can cope with this and there is a way to learn how to deal with this. And I just need to know, I need to learn that. Even when there was no diagnosis family members learnt to cope more effectively following participation in SFT. "I don't really know what I'm dealing with - that's frustrating - but all the learning I'm doing helps to cope." Some of the new coping skills participants learnt included; i) relapse prevention and crisis planning, ii) Ulysses Agreements, iii) support, iv) communication and problem-solving skills, v) limit setting and letting go and vi) self-care and caregiving. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 90 Even before participating in SFT one family member learnt to cope with crisis through experience. He had a psychotic outbreak, we had to call 911 and it was horrible experience, horrible experience." However, the next incident "and again 911, RCMP involvement. This time I was a little more prepared for what the situation was and he didn't go in the police car this time. He went in the ambulance and I was allowed to go with him and I was able to tell them a little more about the previous experience and they were more compassionate and empathetic. " The family member also recognized that they felt less fearful during the second incident and "...things were going to [be] happen and deal with it." Although family members experienced ongoing fear and worry about their ill relative they "now know what [you have] to look for" and "what I have picked up from this [SFT] is that I can live through this as long as I watch for those things [signs of relapse].'''' Family members were learning to trust their instincts when their ill relative was in danger of relapse -"I'm learning better to do this" and taking action when they need to "with the support and knowledge gained throughout courseRelapse prevention includes managing "triggers" and knowing how to "respond' to signs of relapse. "7 can cope better and respond in a way that's more favourable to what the behaviour is and help him.'''' Another family continued that they were coping better with a combination of lived experience and ^thinking about that safety [crisis] plan''' introduced in SFT. The SFT curriculum introduced family members to a number of tools including the "Ulysses Agreement" as a tool for relapse prevention and crisis planning. Ulysses Agreements fulfil a similar function as Representation Agreements but are designed specifically for individuals living with mental illness. "I've been thinking about them [tools] and I've been thinking about sort of stylizing one [Ulysses Agreement] that fits, you know our family" and "having [that] those tools I think are, are just great." Although, there is a Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 91 lot of information and a number to tools introduced in the SFT curriculum family members acknowledged "there is a lot to take in but I think it's going to be very helpful to just go over it more and more and more." The struggle to communicate effectively with their ill relative was a common theme among family participants before participation in SFT. Ifind that I'm not sure how to deal with [name]. When she's in a good mood, I can deal with her easy. And, if she's having a tough day, I'm not sure what to say to make it better. After SFT one participant acknowledged that they had gained more "listening" skills and family members gained confidence in problem solving "especially with the support of BCSS & Kim." Support, both personal and professional, is critical to the process of recovery for the individual living with mental illness and their family members. One participant who had accessed BCSS individual and group family support services before participation in SFT recognized "support is really important and I think continuing to have support from people [peers] who understand." Another family member was clear "7 don't want to be judged, I want to be supported." Yet, supports are often lacking on so many fronts for families affected by mental illness. This lack of support appeared both before and after participation in SFT. Before SFT respondents commented "... they [other family members] do not give support" and "We are almost housebound because there's very few people out there that we know." Family members have got to see him as having a disability in order [to get help], I can't do it myself. So if I was to get more information, I could talk to my relatives, ...so that I could get them on board instead of them pushing him away when he does show up. Even when supports were identified systemic challenges added to family burden. One family member transitioning from youth to adult services commented, "disengaging Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. ourselves now from that service sort of seems to be a difficult transition to work out." Another participant struggled to access support for herself after their ill relative refused to access available services. They inadvertently found BCSS and individual and group family support services that"really; really help and just knowing that I had someone to come talk to that could understand." This frustration with an apparent lack of connection between mental health services often made it hard for family members to find the support they so desperately need. "Well one of the things I think would have helped is when the diagnosis is made that the professionals that are working with you... say you know if you go to such and such a place, there is a support group going on there" Another family member concurred; "I've had social workers, [social worker] saying to me, well what have you found like because we need to know" and the family member replying "aren't you supposed to be helping me?" "This [BCSS] is the only place that I've found the help and support that I needed." Participants commented that the name of the BC Schizophrenia Society is a barrier to access for some families affected by mood and anxiety spectrum disorders. There was still a sprinkling of comments around lack of personal and professional support's following participation in SFT: I have found that there are few resources [respite] to leave our son. If I do not help my ill relative, no one else will. There is no one other than services in Public (sp) at present. I do however wish they [other family members] were more involved in general. Ifeel like I'm dealing with a lot of stuff on my own. However, there was a growing awareness among participants after SFT that"other people feel the same way as me, that I'm kind of not alone out there" and "I think anytime you connect with people in a meaningful way [SFT], it makes life easier." There was also a Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. growing awareness among family members of the need to work in partnership with their ill relative and mental health service providers to "work hand in hand." Before participation in SFT limit setting and letting go seemed unthinkable for some family members. As a parent, you have children and you go through twenty years of raising them and slowly letting to. And, Ifind now that I can't let go and I will never be able to let go. Other family members who had accessed BCSS individual and group family support services before participation in SFT were learning to set boundaries. I can only do so much, I think that's been a key. And helping me in saying you can do this much, but where, where do I draw the line, you know, where do I stop, and were do I set my boundaries. After participation in SFT, the results were mixed regarding respondents perceived ability to set healthy boundaries. One family member stated that they could not set firm limits with their ill relative over those things, which were important to them "as there have been times when to do so has resulted in destructive behaviour." Another family member could set firm limits with their ill relative over those things, which were important to them "when its about me but not for all issues in household" and "in things that Ifeel really strongly about - but I still have trouble with some boundaries" suggests this participant was learning to set healthy boundaries. The concept of letting go is closely tied to limit setting. Separating ourselves, or letting go, from the adverse effects of another person's mental illness can help us look at our situation realistically and objectively (Al-Anon, 2000). Like the issue of boundaries a participant's ability to let go seemed to depend on the situation and their own recovery. One respondent captured the struggle family members go through in letting go: Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 94 You just want to protect her you just want to be there for her all the time. I wanted to do everything for her, ldidn't want her to have to worry about any problems that she had. So I wanted to smother her, which was the wrong thing to do, because she has to learn to deal with it too. Even after participating in SFT one participant still felt embarrassed by their ill relative's behaviour "when we are in an eniroment (sp) which is new." Yet another family member acknowledged that better grooming and personal hygiene of their ill relative was "an issue at times but doesn't bother me." Still another participant said, "I'm getting better at kind of trying to pull backfrom that [ups and downs of mental illness]. I can take care of myself." The antithesis of self-care in mental illness is the added burden of caregiving. Family members often have more responsibilities with caregiving yet are often short on the resources they need to carry this added burden. I'm the constant caretaker. I have to look after myself, I have to look after my job, I have to look after him and I got to look [after] the household and I go to look after the dogs, and I got to look after the car insurance, and I got to look after everything, you know. Although one participant said before participation in SFT "I think I take some of my frustration out on my dear wife and I don't think that's fair and again I don't know how to deal with that," they did demonstrate an intuitive need for self care even if it was infused with guilt. "Ifind that I spend a little bit more time by myself now and I don't particularly like that idea." Following participation in SFT, family members began to realize the importance of self-care. "I really think about it [self-care] more now than I did before and I really I've been going to the gym more and walking more.'''' I have been reminded many times how important health care is you know to keep good care of yourself in order to keep you there when your family members [are having] difficult times, you know you are better able to cope [with mental illness] when you are coping better yourself. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 95 Stage 3: Moving into Advocacy This stage falls under the concept of resilience after family members have successfully coped with crisis and now begin adapting to the long-term affects of mental illness. In the trauma theory of stress, coping and adaptation while moving into advocacy families move through another series of predictable emotional responses including; i) understanding, ii) acceptance, and finally iii) advocacy and action. Again, under each of these headings is a description drawn from the data that captures the more positive aspects of the family member experience expressed before and after participation in the SFT family education program. Understanding In families affected by mental illness two types of understanding emerged. The first was an increased knowledge of the facts about mental illness. The second was an empathetic understanding of the illness experience. Family members in the study exhibited both increased knowledge and empathetic understanding before and after participation in SFT. After many years of professional experience, one respondent understood that"it's [mental illness] not all environmental, it's not all other people, it is got something to do with something that we are born with." This professional experience also gave this family member the skills and confidence to advocate for their loved one and navigate through systems that were often adversarial and discriminatory. If I don't advocate or that I'm not doing it I'm not, I'm not getting any results, it seems like I've had to kick the can till it's very battered before somebody really listens. Another family member with many years of professional experience clearly understood what was happening with their ill relative. llIwork with people who I know to Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 96 have mental illness and I, I started seeing patterns that were really, really similar.'''' But, even this understanding was not enough to overcome the systemic barriers to timely assessment, diagnosis and treatment. This family member still had to deal with crisis before there was any intervention. Still another family member who has accessed BCSS family support services before participating in SFT acknowledged: It was pretty hard to talk about it [mental illness] what's going on because a lot of people would then, you feel like you 're responsible, Ifeel like as a parent I'm the one who, must be something I did or you know, whatever so that was I think that was the hardest part. And that's changed with my getting, understanding [information] more about what's going on. One family member with an understanding and knowledge of mental illness before SFT displayed empathy for their ill relative early on. He didn 't know, I, I realize now, he didn 't know what was going on with him so he was kind ofprotecting himself because I think he was really scared. This same family member continued to empathize with her ill relative after decades of illness. He still struggles, Kim, he still struggles and that, and I think because of he's such a creative person, in some ways I think that you know you have another, another burden for him because he just, he just doesn't want to be held down. Other family members who had no professional experience and who had not accessed any BCSS family interventions before SFT had a more typical response to mental illness. "You begin to feel extremely helpless. You want to help that individual but you don't know anything about it" but "Iknow there's a way lean cope with this [mental illness] and there is a way to learn how to deal with this. And I just need to know, I need to learn that." During the post focus group family participants described their changing understanding of mental illness with more knowledge of the facts. "I have a better Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 97 understanding of mental illness and medications and what those medication do to people.'''' Another participant concurred; "One of the things that really helped me, helped is understanding and a lot of it was CP's explanation about the brain and the chemicals Family members also described growing empathy for individuals living with mental illness with the inclusion of guest speakers living with mental illness in the SFT curriculum. "One thing that I found really positive is finding out how many wonderful, wonderful people live with mental illness''' and "understanding really how they felt.'''' This increased knowledge and empathy helped other family members realize that "in understanding that that she's not, she not you know trying to pull the wool over my eyes, not trying to manipulate us somehow." Another family member commented, "he is capable and makes choices in spite of living with mental illness." This increased understanding among family members drew a call to action from participants for increased knowledge and empathy among the general public beginning with mental health education in our schools and adequate resources for "mental health [services] across the life span" in our health authority. Acceptance Before SFT but after accessing BCSS family support services one participant was moving towards acceptance but acknowledged the struggle. It's not what you picture in your life is being the parent of a you know of a child who's got a mental illness and to the point where OK this is, coming to the point of acceptance and being able to step back and say, OK I need to do this for myself. And, and you know, it's so difficult some times. Even in the throes of feeling anger, guilt and resentment while learning to cope with mental illness, one family member was looking for a glimmer of hope. "He's going to feel Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 98 good, I'm going to feel good, so yah there is that hope. " "That [is] what you are looking for." "Acceptance comes from all the knowledge that I learned [and] all the tools in the [SFT] book. " After SFT, family participants began to shift to more realistic expectations for their ill relative and respect their choices. "It's not having those high expectations anymore...that's made it easier." I have to learn to accept that [their choices] and recognize that they do have a quality of life and that they're [making choices] just like I am for me and they are for themselves. And I have to respect that. And celebrate it too, not always be fearful of their decisions, you know and think that I have to fix them. Family members were able to listen more empathetically to their ill relative without getting upset over the beliefs they were expressing "with a lot of self discipline" "most times" and they were getting along with their ill relative "majority of time and with again knowldege gaine (sp). " Acceptance was pivotal in the recovery of one family member. I do not have to like [mental illness] lean accept it, it is in our family, it is [in] our home but I do have a life, like lean actually control my life now as well as help and do what I need to do also to help him out. I am quite confident in being able to maintain you know a happy life whereas I'll tell you what, two months ago I did not think it was possible at all. Advocacy and Action There was little discussion of advocacy by family members before participation in SFT. SFT introduced family participants to the concepts of advocacy including their right to information, inclusion and a voice in mental health. After SFT produced a much different story with some participants experiencing a significant paradigm shift. "I've been a real jerk thinking that these [street]people [living with mental illness] are all losers, and it's [SFT] made me more, more aware of their situations." Still another participants asks, Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 99 Why the heck haven't we done something about it? Why, why hasn't there been more public outcry against [this] horrible stuff that's being done and I'm now more willing...[to take] action. Closer to home participants had become "more sympathetic toward people with a mental illness." When I"saw people go on stress leave and, and you know truly I thought it was laziness. I don't think that anymore." Still, "there aren't a lot of good things that I have seen happening for [people affected by] mental illness." This growing awareness of advocacy moved participants towards action. "I was thinking about [the] advocacy and I think [that's something] having the knowledge... makes that easier to do." "You know [advocacy] starts, starts you know [by] raising your voices a little bit about it [mental illness]." "There are some challenges there all the time and you kind of have to rise to meet those challenges." And the rally cry, "We've got some work to do!" The qualitative pattern matching analysis suggests respondents experienced the normal and predictable stages and emotional responses outlined in the trauma theory, while moving from burden as the bridge to resiliency in mental illness. The qualitative results suggest SFT was effective at reducing burden and increasing resiliency among family participants. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 100 Chapter Seven Discussion This final chapter offers an interpretation of the quantitative and qualitative descriptions found in the previous section. The quantitative analysis followed the prescribed criteria for describing the data using non-parametric testing making the methodology easily replicable. There was a strong positive relationship found between pre and post burden scores and significantly lower levels of burden following participation in SFT, suggesting the family education program may be effective in reducing burden. There was a weak positive relationship between pre and post resilience scores and no statistical significance in levels of resilience following participation in SFT suggesting the family intervention may not be as effective in increasing resiliency. However, following the principle of pattern matching in mixed methodology outlined by Wiener et al. (1993), the results must be supported by both the quantitative and qualitative results to be tenable. The concepts, stages, and emotional responses used in the qualitative analysis were aligned with the trauma theory of stress, coping and adaptation making a clear link between theory and analysis. On the basis of the literature review, the researcher predicted that family participants would experience a decrease in burden and an increase in resiliency following participation in the SFT family education program intervention. In the qualitative analysis, the researcher can note whether there has been a change, however, cannot comment on the significance of the change. Unlike other physical illnesses, typically the medical community does not screen for mental illness nor does our education system have a standardized curriculum to routinely educate us about mental health. Consequently for many family members their introduction Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 101 into the world of mental illness is often through crisis. The participants in this study were no exception with family members faced with psychotic breaks, suicide attempts, threats and violence, addictions, police intervention, marital break-up, and loss of custody. Family participants experienced the normal predictable emotional responses of shock, denial and hoping against hope when dealing with the catastrophic event of mental illness. There was a noticeable shift from the initial negative response to crisis to a more positive understanding and acceptance of mental illness among most participants following participation in SFT. Laughter replaced crying, the objective financial burden was not mentioned, and the problem of mental illness was reframed as a learning journey suggesting reduced burden among family participants. Although, stigma and discrimination remained a common thread of experience for family members before and after participation in SFT, participants exhibited resiliency in dealing with the ongoing challenge. The concepts of burden and resilience were apparent in the learning to cope stage as family members transition from dealing with catastrophic events and begin to learn to cope with mental illness. SFT family participants struggled with anger, guilt and resentment before recognizing the losses mental illness brings. Family members began to realize that they needed to acknowledge the losses in order to process the grief they were experiencing. Although at first glance these feelings appear negative, family participants learned that they are normal and predictable emotional responses to mental illness and moved from feeling guilty from blame and started healing with forgiveness suggesting a shift from burden to resilience. The support, education and coping skills provided by the SFT intervention were acknowledged as contributing factors in learning to cope among family participants. The Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. continuing need for support was echoed by family members both before and after SFT, however there was a growing awareness that they are not alone in their challenge. The academic knowledge and practical coping skills of relapse prevention, crisis planning, and the Ulysses Agreement were specifically identified as tools that helped build resiliency. To a lesser extent, communication and problem-solving skills were mentioned by family participants as tools to help cope with mental illness. The importance of limit setting and letting go were acknowledged among family participants, however they also recognized that setting boundaries was a process that evolved over time depending on the situation and their growing ability to cope and adapt. The other coping skill family participants talked about following participation in SFT was the importance of balancing their role as caregivers with the need for self-care. All of these findings suggest that family members received support, education and coping skills following participation in SFT which helped them become more resilient and move into advocacy. The moving into advocacy stage includes the concept of resilience after family members have successfully coped with crisis and begin adapting to the long-term affects of mental illness. SFT family participants gained an understanding of mental illness and empathy for the lived experience, which in turn led to realistic expectations for themselves and their ill relative along with renewed hope. Acceptance of mental illness and growing confidence in their ability to not only survive but to thrive was evident among family participants following participation in SFT. Advocacy among family participants was primarily focused at the individual level before SFT. Following participation in SFT, family members were much more aware of the systemic challenges and their right and responsibility to information, inclusion and a voice in mental health. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 103 To summarize the quantitative results revealed that burden significantly decreased following participation in SFT. The qualitative results also suggest a possible decrease in burden among family participants to align with the quantitative findings, thus supporting the hypothesis that SFT is effective in reducing burden among family participants. Although the qualitative data suggests a possible increase in resiliency among family participants, this result was not supported by the quantitative results suggesting SFT may be less effective at increasing resiliency in family members. The section on limitations offers alternative explanations for these findings and suggests how future research can enhance this pilot study. A recent study by Tranvag and Kristofferson (2008) suggests that the experience of burden is the necessary bridge to resiliency over time. "The grieving process can initiate a healing process leading to dawning acceptance ... this led to reconciliation and new hope" (Tranvag & Kristofferson, 2008, p.15). Their conclusion, "education cannot cover all aspects of their needs. It is also important that they [family members] are afforded the opportunity to work through their thought processes and emotional reactions through guidance dialogues" (Tanvag & Kristofferson, 2008, p.15). Although family interventions have been shown to significantly reduce family burden, Glanville and Dixon (2005) argue that the construct of burden does not consider the complexity and multidimensional nature of the caregiving experience. They go on to suggest that family interventions that are designed from a stress, coping and adaptation theoretical framework, like the Family-to-Family Education Program (FFEP), address a broader range of issues and concerns faced by family members affected by mental illness. Glanville and Dixon (2005) go even further by suggesting that effective family interventions must not only consider burdensome issues, but also address the demands of caregiving, how stressors and Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 104 mediating factors affect family member well-being and teach effective coping strategies based on the unique needs of each caregiver. This new research may provide some explanation as to why, although this study found a significant decrease in burden, there was a less significant increase in resiliency following participation in SFT. In contrast, the National Alliance for the Mentally 111 Family-to-Family Education Program (FFEP), described previously, uses the trauma model to help family members achieve emotional understanding and healing plus the model encourages power and action. The FFEP curriculum includes all the elements family members need to process their grief and restore hope; i) speaking pain, ii) normalizing, iii) coming out, iv) empathetic identification with the victim, v) modeling and vi) restoring hope (Burland, 2001). In addition, the FFEP curriculum includes opportunities for breaking the silence, consciousness raising, empowerment, assertiveness and skill training, liberation, solidarity and activism to move family members to power and action (Burland, 2001). The FFEP "merges education with specific types of support to aide families through the various stages of understanding and coping with a family member's illness" (Glanville & Dixon, 2005, p. 20). This certainly does not negate the importance of the benefits provided by the Schizophrenia Society of Canada Strengthening Families Together (SFT) family education program, however additional supports and interventions may be needed to help some family members process their grief and move more fully into advocacy. Studies continue to support the fact that families affected by mental illness experience burden and more still needs to be done to help family members build long-term resiliency to successfully cope and adapt (Stjernswrd & Ostman, 2008; Chiu, Wei, & Lee, 2006). The outlier with the low pre- Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. resilience score and the two participants whose resilience scores declined following participation in SFT also support this argument and the need for effective interventions to not only decrease burden but to increase resiliency. Recommendations It is not clear what theoretical framework was used in the design of the Strengthening Families Together curriculum. If the trauma model of stress, coping and adaptation was used then the SFT study suggests that the curriculum may not adequately support the needs of family members affected by mental illness to successfully adapt and move into advocacy. A clear definition of the theoretical framework could lead to broader goals for the SFT family intervention to include building resiliency in family members affected by mental illness. The SFT curriculum could then be revised based on a sound theoretical foundation with goals and objectives that capture a more balanced and complete picture of the caregiving experience and evolving needs of family members. The current goals of the SFT family education program are to provide support, education and coping skills and the measurable program objectives are, i) to provide opportunities for support and connection, ii) to increase knowledge of mental illness and awareness of mental health services, iii) to address stigma, and iv) to build confidence with communication, problem-solving, coping and advocacy skills. The goals and objectives of SFT do not appear to include the broader goals of emotional understanding and healing or power and action found in the FFEP and recommended by Tranvag and Kristofferson (2008). Although, the teachers for the SFT family education program in this study facilitated more discussion time than the curriculum suggests, participants in the SFT study still echoed a need for "a support group function [because] when you're learning all this Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 106 stuff you need time to process it as well." There was even the suggestion that participants would benefit from meeting again at three and six-month intervals in follow up to SFT. In their study of family interventions over the last decade, Magliano and Fiorillo (2007, p. 32) suggested that families needed "booster sessions following interventions to maintain relatives' communication and problem solving skills over time." The closed SFT family education program ended and family participants were left feeling somewhat abandoned with comments like, "we 're on our own again," even with the availability of individual support and an open monthly family support group. "Mutual support groups [are] associated with consistently greater improvements in patient and family functioning.. .compared with psychoeducation" (Rummel-Kluge & Kissling, 2008, p. 170). Even if changes to the current SFT family education curriculum were made, the challenge for untrained and inexperienced peer family members remains their ability to teach the education content and direct the activities but, perhaps even more importantly, the skills to facilitate the support discussions. Based on the results of this study, I would recommend the SFT education program add teacher and facilitator training for SFT leaders to promote a safe and effective family intervention. Two intervening variables identified in the study might have affected the outcomes for some study participants. Some respondents had professional health care experience and still others had accessed BCSS individual and group family support services before participating in SFT. Evidence of the influence of an intervening variable is captured with one respondents comment that "as a result of all this [mental illness] we have joined the focus [support] group here [BCSS] of course and I think that helps." Sampling in future Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 107 studies might consider excluding these participants to reduce the influence of intervening variables. Future research might consider using a single experimental or naturalistic methodological approach to test program effectiveness. However, in this study the case study design using pattern matching was a realistic approach to an outcome evaluation. "Such an approach remains true to the deductive logic of quasi-experimental research by taking advantage of other methodologies that are available in the repertoire of qualitative researchers" (Wiener et al., 1993, p. 500). Weiner et al. (1993, p. 500) go on the say that "combining two or more maximally different methodologies with maximally different biases can only increase the rigor of the conclusions of either method applied by itself." Limitations and Future Research Regardless of the explanation for the outcomes, the results match the successful outcome pattern for a decrease in burden but not for an increase in resiliency. I concluded that the Strengthening Families Together family education program was effective in reducing burden, but there is not enough support to conclude that the program had been as effective in increasing resiliency. One of the limitations of evaluating goodness of fit of observed case study results with expected successful outcome results is similar to the problem of statistical decision-' making. "If one concludes wrongly that the pattern is not a close enough fit when in fact it is a match, then one is committing a type II error, failing to conclude that a successful program is effective. On the other hand, if one uses a decision strategy that is too favorable, then one may commit a Type I error concluding that the observed outcome data fit those predicted for the successful program while the program was in fact not effective" (Wiener et al, 1993, p. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 108 499). I have used the same conservative approach I used in the quantitative analysis to protect against Type I error. I concluded that the successful pattern was matched in reducing burden, which was supported in both the quantitative and qualitative analysis. However, although a change in resiliency was noted in the qualitative analysis, there was not a significant increase found in the quantitative results. Both the quantitative and qualitative measures used in this study had limitations that may have contributed to the results. The instrument used to measure post resilience in the quantitative analysis had a decrease in reliability suggesting it had lower sensitivity and may have missed changes in resiliency. The development of a quantitative instrument for resiliency and further testing of reliability would benefit future research. The post focus group used in the qualitative analysis did not provide the researcher with the detail of the individual interviews and may also have missed changes in resiliency. Future research that includes a more in-depth look at the family experience following the intervention would provide more data. Both quantitative and qualitative methodology would benefit from a larger random sample and a more universally accepted definition of the concept of resiliency that could be used in future research. Although, the teachers maintained intervention fidelity when adding lecture content, participant activities and discussion time to the SFT curriculum to enhance the program, these changes may make it more challenging for future researchers to replicate this study. "The term intervention fidelity refers to the degree to which the intervention actually delivered to clients was delivered as intended" (Rubin & Babbie, 2005, p. 354). However, I would argue that the flexibility of the SFT curriculum and current lack of teacher training may make it difficult to achieve consistency across studies of the family education program Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 109 even though the program was delivered as intended. The lack of consistency in SFT teacher training and the flexibility of the SFT curriculum also make it difficult to generalize any findings in this study to the broader population. Standardized SFT teacher training would add some consistency to the education program. A more rigid SFT curriculum would make research easier to replicate but may detract from the benefits of a flexible curriculum that can be adapted to meet the unique needs of family participants across the country. The challenge will be to incorporate changes in SFT to improve outcomes for family members while still maintaining the benefits of a flexible curriculum. Conclusion "If one out of five Canadians will be affected by a mental disorder, or by the consequences of addiction, at some point in their life, then another four or five family members will also in some way be affected" leaving no one unaffected (Jones, 2005 p. 42). With depression projected to be the leading cause of disability in the next decade and declining availability of formal health care services, the need to build capacity among family members as informal caregivers is not only beneficial but a necessity. Beyond the obvious economic costs, there are the personal costs for consumers and family members that can no longer be avoided. We cannot afford to neglect families as valuable resources in the continuum of care for individuals living with mental illness and in managing their own wellbeing. Relatively low cost peer family interventions, like the Strengthening Families Together family education program, are an opportunity for families to supplement the high cost of dwindling health care resources and take responsibility for helping to maintain the well-being of individuals and communities. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 110 Evidence based best practice has long recognized the importance of family support and involvement in mental health, yet family members are typically excluded from the continuum of care. In the trauma model of stress, coping and adaptation as family members move into advocacy a significant part of our recovery is putting our lived experience to good use by sharing our wisdom with others to reduce their burden and ease their journey in dealing with mental illness and in learning to cope and adapt. Family interventions like SFT not only help family members, but the ill relative they support and health care providers plus the communities in which they live. Since the publication of the second edition of Strengthening Families Together (SFT) family education program by the Schizophrenia Society of Canada (SSC) in 2005 and beginning the SFT study in 2007 there has been worldwide economic calamity, which has had a negative impact on the political climate and on many aspects of our personal lives. In 2009 the SSC and the British Columbia Schizophrenia Society (BCSS) were both maintaining virtual offices in the face of diminishing operating dollars. There are likely limited financial resources available to make formal changes to SFT nationally. For the moment BCSS is focusing on regional operations throughout the province. The opportunity, while funding from Northern Health continues, is for the researcher to make changes to SFT based on a review of the current literature and findings from this study and incorporate the revised SFT into Prince George and the northern interior region programming and share these resources with others as funding becomes available. At the time of writing I have completed changes to the SFT curriculum and have developed a teacher training curriculum. The BCSS Prince George Branch funded SFT teacher training in the spring of 2009 and the revised curriculum will be taught in Prince George and the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Ill northern interior beginning September 2009. In addition BCSS received funding from the Canada Post Foundation to have the researcher offer SFT teacher training throughout the province, and the Yukon government has invited the researcher to conduct SFT teacher training in Whitehorse in the winter of 2010. Although all the recommended changes to SFT may not be feasible at this time, there was still the opportunity to revise SFT and improve the quality of life for those affected by mental illness by starting within our own community. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 112 References Al-Anon Family Group Headquarter, Inc. (2000). Detachment. Ottawa, Canada: Al-Anon Family Group headquarters, Inc. Alberta Mental Health Board. (2002). Program/Service Evaluation Standards. Research Evaluation Program. Edmonton, AB: Alberta Mental Health Board. Austen, S., Jefferson, T., & Thein, Vicki. (2003). Gendered social indicators and grounded theory. 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Goal and Objectives Goal: To assess and improve the effectiveness of the Strengthening Families Together family education program by exploring and describing changes in family burden and resiliency before and after participation in SFT. Objectives To explore and describe changes in family burden before and after participation in SFT To explore and describe changes in family resiliency before and after participation SFT Participant Task Requirements and Project Duration • You have been chosen for this research because you responded favourably to a request for participants from individuals registered for the Strengthening Families Together family education program. • Your participation in the project is entirely voluntary and you have the right to refuse to participate in any activity or respond to any question. • Your participation may benefit other family members by improving the effectiveness of SFT. • There are no known risks associated with your participation, however a list of supportive services will be made available. • There will be no costs for you, nor will you be paid for your participation. • You have the right to withdraw consent and discontinue your participation at any point in the study and any information you provided will not be included in the study and will be destroyed immediately. • Your participation or non-participation will not in any way impact your access to services Participation in the project will require: 1 to 2 hour meeting scheduled at a time and place of your convenience to: Review information sheet and sign consent form(s) Complete questionnaire Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 121 Participate in interview Participation in the 10-session Strengthening Families Together education program. 2 to 2.5 hour focus group at a pre-scheduled date, time and place to: Complete questionnaire Participate in focus group Confidentiality/Anonymity and Distribution of Research Findings . Your confidentiality and anonymity will be protected. All of the information you provide through questionnaires will be stored in a locked cabinet in the researcher's office until the project report is complete. All of the researcher's observations and all of the information you provide through the audio-recorded interview and the video-recorded focus group will be transcribed the researcher and stored in a locked cabinet in the researcher's office until the project report is complete. I can guarantee my confidentiality, however, confidentiality within a focus group setting cannot be guaranteed. All the information gathered will be analyzed by the researcher. Your information will be combined with the information received by others who participate in this study. What is learned about your experience of participating in the Strengthening Families Together family education program will be reported in a final research report, academic journals professional conferences or SSC/BCSS agency meetings, but without information that could identify you as an individual. You will not be identified with any reported or published information. Once your information is included in the study, it can no longer be identified as yours. A summary of the research results and/or a final copy of the research report will be available to you upon completion of the study at your request (contact information below). All information related to the project including questionnaires, audio and video recordings and transcriptions will be destroyed within 5 years by shredding papers and deleting audio and video recordings. Researcher and Supervision Information If you have any questions or comments please contact: Researcher: Kim Dixon, Community Health Science graduate student at UNBC P.O. Box 504, Prince George, BC. V2L 4S6 (250) 561-8033 or toll free 1-888-561-8055 Email: kimdixon@bcsspg.org If you have any concerns about how this project is being conducted, you may contact: Thesis Supervisor Dawn Hemingway, Social Work and Community Health faculty member at the University of Northern British Columbia who can be reached at (250) 960-5694 or hemingwa@unbc.ca OR Office of Research at the University of Northern British Columbia at (250) 960-5820 or reb@unbc.ca Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 122 Appendix B Informed Consent Form for Pre Questionnaire and Interview The purpose of an informed consent is to ensure that you understand the goal of the study and how you will be involved. Study Title Mental Illness and Strengthening Families Together Family Education Program: Impact on Burden and Resilience. A Pilot Study." A Thesis Research Project by Kim Dixon registered in the Master of Science Community Health Science Program at UNBC Goal: To assess and improve the effectiveness of the Strengthening Families Together family education program by exploring and describing changes in family burden and resiliency before and after participation in SFT. Task Requirements and Project Duration Participation in the project will require: 1 to 2 hour meeting scheduled at a date, time and place of your convenience to: Review information sheet and sign consent forms(s) Complete questionnaire Participate in interview Participation in the 10-session Strengthening Families Together peer education program. 2 to 2.5 hour focus group at a pre-scheduled date, time and place to: Complete questionnaire Participate in focus group • • • • • • • Right to Withdraw You have been chosen for this research because you responded favourably to a request for participants from individuals registered for the Strengthening Families Together family education program. Your participation in the project is entirely voluntary and you have the right to refuse to participate in any activity or respond to any question. Your participation may benefit other family members by improving the effectiveness of SFT. There are no known risks associated with your participation, however a list of support services will be made available. There will be no costs for you, nor will you be paid for your participation. You have the right to withdraw consent and discontinue your participation at any point in the study and any information you have provided will not be included in the study and will be destroyed immediately Your participation or non-participation will not in anyway impact your access to services Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 123 Confidentiality/Anonymity and Distribution of Research Findings Your confidentiality and anonymity will be protected. All of the information you provide through questionnaires will be stored in a locked cabinet in the researcher's office until the project report is complete. All of the researcher's observations and all of the information you provide through the audio-recorded interview will be transcribed by the researcher and stored in a locked cabinet in the researcher's office until the project report is complete. The researcher will analyze all the information gathered. Your information will be combined with the information received by others who participate in this study. What is learned about your experience of participating in the Strengthening Families Together family education program will be reported in a final research report, academic journals, professional conferences or SSC/BCSS agency meetings, but without information that could identify you as an individual. You will not be identified with any reported or published information. Once your information is included in the study, it can no longer be identified as yours. A summary of the research results and/or a final copy of the research report will be available to you upon completion of the study at your request (contact information below). All information related to the project including questionnaires, audio recordings and transcriptions will be destroyed within 5 years by shredding papers and deleting audio recordings. Researcher and Supervision Information If you have any questions or comments please contact: Researcher: Kim Dixon, Community Health Science graduate student at UNBC P.O. Box 504, Prince George, BC. V2L 4S6 (250) 561-8033 or toll free 1-888-561-8055 Email: kimdixon@bcsspg.org If you have any concerns about how this project is being conducted, you may contact: Thesis Supervisor Dawn Hemingway, Social Work and Community Health faculty member at the University of Northern British Columbia who can be reached at (250) 960-5694 or hemingwa@unbc.ca OR Office of Research at UNBC at (250) 960-5820 or reb@unbc.ca I have read the information sheet and consent and am willing to participate in this study as described. I am aware that I may discontinue my involvement whenever I wish. Name: Signature: Address: Phone: Date: I have explained the project and answered any questions for the above participant and believe he/she understands his/her involvement. Researcher: Signature: Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 124 Appendix C Informed Consent Form for Post Questionnaire and Focus Group The purpose of an informed consent is to ensure that you understand the goal of the study and how you will be involved. Study Title Mental Illness and Strengthening Families Together Family Education Program: Impact on Burden and Resilience. A Pilot Study." A Thesis Research Project by Kim Dixon registered in the Master of Science Community Health Science Program at UNBC Goal: To assess and improve the effectiveness of the Strengthening Families Together family education program by exploring and describing changes in family burden and resiliency before and after participation in SFT. Task Requirements and Project Duration Participation in the project will require: 1 to 2 hour meeting scheduled at a date, time and place of your convenience to: Review information sheet and sign consent form(s) Complete questionnaire Participate in interview Participation in the 10-session Strengthening Families Together peer education program. 2 to 2.5 hour focus group at a pre-scheduled date, time and place to: Complete questionnaire Participate in focus group • • • • • • • Right to Withdraw You have been chosen for this research because you responded favourably to a request for participants from individuals registered for the Strengthening Families Together family education program. Your participation in the project is entirely voluntary and you have the right to refuse to participate in any activity or respond to any question. Your participation may benefit other family members by improving the effectiveness of SFT. There are no known risks associated with your participation, however a list of support services will be made available. There will be no costs for you, nor will you be paid for your participation. You have the right to withdraw consent and discontinue your participation at any point in the study and any information you have provided will not be included in the study and will be destroyed immediately Your participation or non-participation will not in anyway impact your access to services Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 125 Confidentiality/Anonymity and Distribution of Research Findings Your confidentiality and anonymity will be protected. All of the information you provide through questionnaires will be stored in a locked cabinet in the researcher's office until the project report is complete. All of the researcher's observations and all of the information you provide through the video-recorded focus group will be transcribed by the researcher and stored in a locked cabinet in the researcher's office until the project report is complete. I can guarantee my confidentiality, however, confidentiality within a focus group setting cannot be guaranteed. The researcher will analyze all the information gathered. Your information will be combined with the information received by others who participate in this study. What is learned about your experience of participating in the Strengthening Families Together family education program will be reported in a final research report, academic journals, professional conferences or SSC/BCSS agency meetings, but without information that could identify you as an individual. You will not be identified with any reported or published information. Once your information is included in the study, it can no longer be identified as yours. A summary of the research results and/or a final copy of the research report will be available to you upon completion of the study at your request (contact information below). All information related to the project including questionnaires, video recordings and transcriptions will be destroyed within 5 years by shredding papers and deleting video recordings. Researcher and Supervision Information If you have any questions or comments please contact: Researcher: Kim Dixon, Community Health Science graduate student at UNBC P.O. Box 504, Prince George, BC. V2L 4S6 (250) 561-8033 or toll free 1-888-561-8055 Email: kimdixon@,bcsspg.org If you have any concerns about how this project is being conducted, you may contact: Thesis Supervisor Dawn Hemingway, Social Work and Community Health faculty member at the University of Northern British Columbia who can be reached at (250) 960-5694 or hemingwa@,unbc.ca OR Office of Research at UNBC at (250) 960-5820 or reb@unbc.ca I have read the information sheet and consent and am willing to participate in this study as described. I am aware that I may discontinue my involvement whenever I wish. Name: Signature: Address: Phone: Date: I have explained the project and answered any questions for the above participant and believe he/she understands his/her involvement Researcher: Signature: Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 126 Appendix D "Mental Illness and Strengthening Families Together Family Education Program: Impact on Burden and Resiliency. A Pilot Study." Before and After Questionnaire Please select your response by marking an X in the bracket: 1. Are you female or male? [ ] Female [ ] Male 2. What is your age? [ ] Under 19 years [ ] 19-29 years [ ] 30-39 years [ ] 40-49 years [ ] 50-59 years [ ] 60 years and over 3. Do you have a family member living with a mental illness? [ ] Yes [ ] No 4. What is your relationship to the primary family member living with a mental illness? I am a(n): [ ] Parent [ ] Partner [ ] Sibling [ ] Adult child [ ] Other (Please Specify) Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 127 5. What is the extent of your involvement or contact with the family member living with a mental illness? ] None ] Once a week or less ] Once every few days ] Daily ] Available 24 hours a day How long has your family member been living with a mental illness? ] Less than 1-year ] 1 to 5 years ] 6 - 10 years ] Over 10 years ] Deceased What primary mental illness diagnosis does your family member have? ] Schizophrenia ] Bipolar ] Depression , ] Anxiety ] Concurrent (Mental Illness and Problem Substance Use) ] Other (Please Specify) Are you registered to participate in the Strengthening Families Together Family Education Program? If yes, how many sessions did you attend? [ ] Yes ->Number of Sessions [ ] No Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Please rate the following by circling your response: 9. I feel useful when I help my ill relative. STRONGLY AGREE 10. AGREE DISAGREE STRONGLY DISAGREE AGREE DISAGREE STRONGLY DISAGREE AGREE DISAGREE STRONGLY DISAGREE AGREE DISAGREE STRONGLY DISAGREE I am sure there is a way to solve problems when they come up. STRONGLY AGREE 16. STRONGLY DISAGREE I can have a full and happy life despite the sadness I sometimes feel about my relative's illness. STRONGLY AGREE 15. DISAGREE I can trust my instincts when I feel my ill relative is in danger of relapse. STRONGLY AGREE 14. AGREE I can identify the support I need to keep going in this life hardship. STRONGLY AGREE 13. STRONGLY DISAGREE I can set firm limits with my ill relative over those things, which are important to me. STRONGLY AGREE 12. DISAGREE I can listen empathetically to my ill relative without getting upset over the beliefs s/he is expressing. STRONGLY AGREE 11. AGREE AGREE DISAGREE STRONGLY DISAGREE Taking action when I need to is therapeutic for me. STRONGLY AGREE AGREE DISAGREE STRONGLY DISAGREE Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 129 17. One of the hardest things about dealing with my ill relative is that his/her problems are so unpredictable. STRONGLY AGREE 18. AGREE DISAGREE STRONGLY DISAGREE AGREE DISAGREE STRONGLY DISAGREE AGREE DISAGREE STRONGLY DISAGREE AGREE DISAGREE STRONGLY DISAGREE Sometimes, I feel that my ill relative is not really mentally ill but instead is just being lazy or uncooperative. STRONGLY AGREE 24. STRONGLY DISAGREE I feel sad when I think about the shattered dreams mental illness has caused my ill relative. STRONGLY AGREE 23. DISAGREE I worry about the effect of stigma and discrimination on my relative's future life prospects. STRONGLY AGREE 22. AGREE One of the hardest things about my ill relative's problem is worrying about whether or not the worst symptoms will occur again. STRONGLY AGREE 21. STRONGLY DISAGREE Sometimes, trying to deal with my ill relative's problem makes me feel helpless. STRONGLY AGREE 20. DISAGREE I worry about what the future will bring for my ill relative. STRONGLY AGREE 19. AGREE AGREE DISAGREE STRONGLY DISAGREE I feel that my ill relative tries to manipulate me. STRONGLY AGREE AGREE DISAGREE STRONGLY DISAGREE Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 130 25. If I do not help my ill relative, no one else will. STRONGLY AGREE 26. DISAGREE STRONGLY DISAGREE AGREE DISAGREE STRONGLY DISAGREE AGREE DISAGREE STRONGLY DISAGREE AGREE DISAGREE STRONGLY DISAGREE AGREE DISAGREE STRONGLY DISAGREE I wish I could get more help for my ill relative from other members of my family. STRONGLY AGREE 33. AGREE I feel that my ill relative is too dependent on me. STRONGLY AGREE 32. STRONGLY DISAGREE Sometimes, I am not sure where my ill relative fits in as part of the family. STRONGLY AGREE 31. DISAGREE I can never plan to do things with other people unless I first stop and think about whether or not my ill relative will need me. STRONGLY AGREE 30. AGREE My family and I often have disagreements about my involvement with my ill relative. STRONGLY AGREE 29. STRONGLY DISAGREE I feel embarrassed by my ill relative's behaviour. STRONGLY AGREE 28. DISAGREE I wish my ill relative would show better grooming and personal hygiene. STRONGLY AGREE 27. AGREE AGREE DISAGREE STRONGLY DISAGREE I do not feel alone because I know that there are other families with problems much like mine. STRONGLY AGREE AGREE DISAGREE STRONGLY DISAGREE Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 131 34. I get along with my ill relative. STRONGLY AGREE 35. DISAGREE STRONGLY DISAGREE AGREE DISAGREE STRONGLY DISAGREE AGREE DISAGREE STRONGLY DISAGREE I take time for myself to take care of myself and do the things I enjoy. STRONGLY AGREE 39. AGREE I feel guilty about my relative's illness. STRONGLY AGREE 38. STRONGLY DISAGREE I have a happy outlook on life in general. STRONGLY AGREE 37. DISAGREE I plan to participate in activities to lower stigma and discrimination against people with mental illness in my community. STRONGLY AGREE 36. AGREE AGREE DISAGREE STRONGLY DISAGREE Do you have any comments to add about how having a family member living with a mental illness and/or addictions has affected your life? Please write below. THANK YOU Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Appendix E "Mental Illness and Strengthening Families Together Family Education Program: Impact on Burden and Resiliency. A Pilot Study." Interview Questions To be asked before participation in the SFT family education program: • I am interested in your experience as a family member affected by mental illness and/or addictions. Can you tell me how your story began and what finally brought you to BCSS and the SFT family education program? • How has mental illness and/or addictions affected your life? • What are the hardest aspects of having a relative living with mental illness and/or addictions? • What might help you cope more effectively with mental illness and/or addictions? Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 133 Appendix F "Mental Illness and Strengthening Families Together Family Education Program: Impact on Burden and Resiliency. A Pilot Study." Focus Group Questions To be asked after participation in the SFT family education program: • How do mental illness and/or addictions continue to affect your life? • What continues to be the hardest aspect of having a relative living with mental illness and/or addictions? • What has helped you cope more effectively with mental illness and/or addictions? • What message about your experience with mental illness and/or addictions would you like to share with, i) NH mental health and addictions system, ii) SSC and BCSS, iii) general public, iv) family and friends and v) other family members living with mental illness and/or addictions? Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.