From Pillar To Post: Transitioning From Child And Youth Mental Health Services To Adult Mental Health Services In Prince George, British Columbia Lynne Boutcher BSc., University O f Glasgow, Scotland, 1998 Thesis Submitted In Partial Fulfillment O f The Requirements For The Degree O f Master O f Social Work The University O f Northern British Columbia March 2007 © Lynne Boutcher, 2007 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 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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. i*i Canada Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Abstract This study explored the transition process from Child and Youth Mental Health, (under the Ministry o f Children and Family Development) to Adult Mental Health (under the Ministry of Health) in Prince George, British Columbia, as experienced by clients, service providers, and administrators. Presently the transition to AMH is supposed to happen when clients reach nineteen years o f age. The experiences and observations from the participants regarding the transition process were ascertained through a phenomenological approach. Interviews and focus groups were conducted with three groups o f participants: administrators from both Ministries; service providers from both Ministries; and, service users who had recently completed the transition process. The results indicate that there are various areas o f the transition process that are in need o f improvement: communication between service providers; joint service provision for clients; and, a blurring o f the age criteria currently in place for transitioning clients. Further implications for policy, practice, and considerations for future research are also considered. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Table o f Contents Abstract...........................................................................................................................................ii Table o f Contents......................................................................................................................... iii Acknowledgements...................................................................................................................... vi Chapter One: Introduction............................................................................................................1 Rationale for the Study.............................................................................................................1 Researcher Standpoint............................................................................................................. 2 Need for Research..................................................................................................................... 4 C onclusion................................................................................................................................. 5 Chapter Two: Literature R eview .................................................................................................6 Theoretical Standpoint..............................................................................................................6 Transition from Child to A dult............................................................................................... 9 When does one become an adult?......................................................................................... 10 Mental Health During the Transition to Adulthood............................................................15 Canadians’ Mental H ealth ..................................................................................................... 19 British Columbia’s Children’s Mental H ealth.................................................................... 22 Mental Health Services in Prince George............................................................................24 Child and Adolescent Mental Health Services through Intersect................................ 25 Adult Mental Health Services........................................................................................... 26 Early Psychosis Intervention............................................................................................ 27 Dissemination of R esearch....................................................................................................38 D efinitions............................................................................................................................... 39 Chapter Three: M ethodology.....................................................................................................42 Aims and Objectives...............................................................................................................42 G oals.................................................................................................................................... 42 Research Questions............................................................................................................ 43 Theoretical A pproach........................................................................................................ 43 Phenomenological Approach to Interviewing and Focus G roups............................... 47 Similarities and Differences Between Interviews and Focus Groups..........................50 Justification for Selection..................................................................................................53 Ethical Considerations....................................................................................................... 55 Reproduced with permission of the copyright owner. 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Research M ethods/Design.....................................................................................................57 Participants.......................................................................................................................... 57 Data C ollection...................................................................................................................59 Procedures........................................................................................................................... 64 Data A nalysis......................................................................................................................67 Chapter Four: R esults.................................................................................................................68 Communication....................................................................................................................... 68 Administrators.....................................................................................................................69 Service Providers............................................................................................................... 71 Service U sers...................................................................................................................... 75 Age o f Transfer....................................................................................................................... 76 Administrators.....................................................................................................................77 Service Providers............................................................................................................... 80 Service U sers...................................................................................................................... 85 Service Provision....................................................................................................................86 Administrators.....................................................................................................................86 Service Providers............................................................................................................... 88 Service U se rs......................................................................................................................91 Turf Issues................................................................................................................................94 Administrators.....................................................................................................................94 Service Providers............................................................................................................... 96 Client N e ed ..............................................................................................................................97 Administrators.....................................................................................................................97 Service Providers............................................................................................................... 99 Service U se rs.................................................................................................................... 101 W orkload................................................................................................................................ 103 Administrators...................................................................................................................103 Service Providers..............................................................................................................103 Service U se rs.................................................................................................................... 105 Chapter Five: D iscussion......................................................................................................... 107 Similarities and Differences Across the G roups...............................................................107 Reproduced with permission of the copyright owner. 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V Implications for Policy..........................................................................................................113 Implications for Practice...................................................................................................... 119 Limitations o f This Study.................................................................................................... 123 Suggestions for Future R esearch........................................................................................ 124 Conclusion............................................................................................................................. 126 References...................................................................................................................................128 Appendix A: Map o f Northern Health A uthority................................................................. 147 Appendix B: Interview/Focus Group Questions................................................................... 148 Appendix C: Information Sheets and Consent Form s..........................................................152 Appendix D: UNBC Ethics A pproval....................................................................................163 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Acknowledgements The completion o f this thesis would not have been possible had it not been for the support o f a number o f individuals: I extend thanks to Sheryl Fillion, Sandi DeWolf, and Beth Ann Derksen for their assistance in recruiting clients for the interviews: that was a time o f much anxiety for me and I am grateful that it all came together. I would also like to thank all the participants o f this study, who made it possible to proceed with this thesis topic. The overwhelming interest in this research study from the participants, UNBC professors, and community members alike was a great source o f encouragement for me to persist with it and see it through. My thanks also go to my supervisor, Dr. Glen Schmidt, for his patience, encouragement, and expertise throughout the thesis process and also through my entire MSW experience. I also thank my committee members, Dawn Hemingway and Dr. Cindy Hardy, for their recommendations and fine tuning o f m y work. I wish to thank m y many proof readers who took the time (a lot o f time!) to read through my work and offer suggestions for tweaking it here and there. You know who you all are - so thank-you. I would never have made it through this MSW journey had it not been for the support of my friends and family, both here in Prince George, and in Scotland - my home © . I thank them for seeing me through my ups and downs, my beliefs and my doubts, but none more so than my husband Paul. I have so much to thank him for; I don’t know where to begin. His belief in me is never failing. I am grateful for his unceasing support and for loving me “most o f the time.” Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 1 Chapter One Introduction Rationale fo r the Study In 1995 Justice Gove made numerous recommendations surrounding the structure o f service delivery for children in British Columbia (BC). One o f those recommendations was for all services for children and youth to be aggregated under one ministry: The Ministry for Children and Family Development (MCFD). Subsequently, mental health services are under the management o f two Ministries: MCFD for children and youth and Ministry o f Health for adults. Previously, all mental health services were managed by Ministry o f Health. Presently, upon reaching the age o f nineteen, youth receiving mental health services pass through a transition from Child and Youth Mental Health (CYMH) to Adult Mental Health (AMH). The primary questions to explore are 1) what is this transition process like for clients? and 2) what are the successes/failures o f structure o f service delivery? In brief conversations with social work faculty, service providers within MCFD and Ministry o f Health, and some managers/supervisors from both Ministries, this research topic was met with great interest. It appears that the reason for this interest is two-fold: 1) the division o f mental health services and the transition process have yet to be researched, and 2) the question remains as to whether the division o f mental health services is beneficial for service users. This latter point is still a topic o f great debate. So much so that for a very brief period in 2005, a provincial government decision saw the amalgamation o f CYMH services with AMH services, under Ministry o f Health. However, this decision was later withdrawn and the original Post-Gove division o f Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 services resumed (Henlon, 2005a, 2005b, 2005c). The fact that the division o f services is, or recently was, a subject o f debate within the provincial government assured me that this was a relevant research topic, with practitioners from both Ministries articulating a vested interest in the outcomes. Researcher Standpoint As the researcher in this proposed project, it is important to offer some insight into the position I hold in this research project. This, in turn, helps ensure that rigour is achieved in the research process (Davies & Dodd, 2002). Throughout my life I have been surrounded by a variety o f social supports. The oft-heard phrase “it takes a community to raise a child” rings true for me. Family, friends, and mentors have all played a positive role in bringing me to the position that I hold today. This support has been unfaltering and continues presently as I pursue my endeavour in the Master o f Social W ork program. However, I recognize that I am in a very fortunate position. Many others have not been blessed with a safe, supportive, and nurturing environment in which to grow. There are various factors that can impact a child or youth’s mental health; for instance, poverty (Eamon, 2002; McLeod & Shanahan 1996), traumatic events (Turner & Lloyd, 1995), and attachment problems (Green & Goldwyn, 2002). In addition, my work experience in mental health and addictions has demonstrated to me that there are a variety o f structural factors that contribute to the development o f an individual’s mental health problems. I have also been interested in how these individuals have been served by society. W hat resources, supports, and services are available to help them? Having lived in Canada for less than four years, I am Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 still somewhat naive about the systems and structures that are in place for individuals with mental health issues. I am interested in how accurately policy is reflected in practice. From conversations with service providers within CYMH, I have learned that the policy regarding the age o f transition o f services is not always reflected in practice. The formal transfer o f services should occur once a client reaches the age o f nineteen (CYMH, 2003) and “it is essential that planning for the transition from children’s mental health to adult mental health begin well ahead o f the formal transfer” (p. 18). However, in practice, it transpires that some clients in their early twenties may still receive services from CYMH (S. Perry, personal communication, April 3, 2006; P. Boutcher, personal communication March 27, 2006). I am interested in what factors contribute to these apparent inconsistencies in the transition process. I have had no personal encounters with mental health services in Canada or Scotland (my place o f birth); however, I have had indirect experiences o f both AMH and CYMH through friends and my husband. Recently, a friend o f mine has been accessing AMH services for depression. He has shared some o f his frustrations with the ‘hoops’ he has had to jump through in order to receive help for his depression. These include: participation in group therapy where he is the only male participant; groups that are not age-appropriate; and groups arranged at inconvenient times (e.g., 5 to 7 pm, at the end o f a working day, with no refreshments provided). Following a discussion with one o f the mental health counsellors in AMH, I learned that group counselling/support is a common approach used at AMH services (C. McQuarrie, personal communication September 16, 2005). The issues raised by my friend are also apparent for youth transitioning to AMH Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 4 and may be indicative o f a northern environment such as Prince George. There are fewer services available for clients in Prince George, in comparison to more urban communities, thus group supports that are available are not always appropriate. These are important factors for me to be mindful o f when exploring the topic o f transition. My husband, a local physician, is contracted with MCFD for child and adolescent psychiatry services through Intersect Child and Youth Services in Prince George (hereafter, Intersect). When I was researching potential thesis topics, he introduced the idea o f exploring the transition process. From conversations with his colleagues, it transpired that many therapists and counsellors were not convinced that the transition process was well structured or met all the needs o f clients. Although the transition process is supposed to begin in advance o f an individual’s nineteenth birthday, many o f the Intersect counsellors were concerned about how well the clients functioned during, and following the transfer. As I was interested in learning more about the structure of mental health services in BC, and because this particular topic was o f interest to many (university faculty, service providers, and ministry managers), I concluded that this was an appropriate focus for my thesis project. I have been fortunate to share in the experiences o f service users and service providers o f mental health services in Prince George and this has encouraged me to pursue this thesis topic, in the hopes that it will be o f benefit to the two Ministries, service providers, and service users. Need fo r Research It is apparent that there is a gap in the research literature surrounding the structure that is in place for the delivery o f mental health services in BC. Therefore, it seemed Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. appropriate to ascertain the experiences o f service users transitioning from CYMH to AMH. The Commission on the Future o f Health Care in Canada (CFHCC) (2002) advocate for the inclusion o f service users’ opinions when developing the structure and policies of mental health services. Furthermore, to build a holistic picture o f the transition process, it was necessary to hear the opinion o f service providers and administrators from both CYMH and AMH. It is important to consider the views o f service users as well as providers and administrators when exploring the effectiveness o f the transition process and also for seeking suggestions for improvement o f the process. Conclusion This study explores the transition process by firstly conducting a literature review on mental health, exploring the definitions o f adolescent and adult, and the research on transferring into different systems o f care. Secondly, a description o f the qualitative approach to the research is provided and an explanation o f the methods applied in the research. Thirdly, the results are reported according to the theoretical approach and finally these results are discussed with consideration to the impact o f the research on policy and practice. It is hoped the findings o f this research study will be o f benefit to the Ministries and agencies/services involved in the delivery o f mental health services in Prince George. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 6 Chapter Two Literature Review Theoretical Standpoint Radical social work (Fook, 1993) and structural social work theory (Mullaly, 1997) are similar theories both being applied in Canadian schools o f social work, including the social work department at the University o f Northern British Columbia. There are five main themes present within radical social work: 1) socio-economic structures are the source o f individual problems, 2) the role o f radical social workers as agents o f social control is continually analysed, 3) the present social, political, and economic environments are critiqued, 4) radical social workers strive to protect individuals from oppression by dominant groups in society, and 5) radical social workers strive for social change (Fook). Although all the themes are integral to radical social work, the first theme “is the cornerstone o f a radical approach” (p. 7). Radical and structural social work both stem from critical theory. Critical theory “provides criticisms and alternatives to traditional, mainstream social theory, philosophy, and science” (Mullaly, 1997 p. 108). As opposed to traditional neo-conservatist beliefs o f blaming individuals for the difficulties they experience, structural social work theory focuses on societal structures as contributing factors to the oppression and injustices individuals face (Payne, 1997). The focus on societal structures is the same as the first theme in radical social work. Structural social work theory, as outlined by Mullaly, will be the foundation for this thesis, hence, it is necessary to elaborate further on the history and principles o f this theory. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 7 The principles o f structural social work theory urge social workers to explore the context o f the individual’s lived experience; therefore, the focus is not on the individual’s problem, but on structural factors that are contributing to, or causing the problem. “Given this view of social problems, structural social workers seek to change the social system and not the individuals who receive, through no fault o f their own, the results o f defective social arrangements” (Mullaly, 1997, p. 133). “The goal o f structural social work is transformation [italics in original]. That is, it seeks to change the society in which this occurs, rather than simply dealing with the consequences o f it” (Payne, 1997, p. 223). The focus o f structural social work is on the elimination o f oppression, as it is seen as the root o f the majority o f social problems. However, Mullaly (2002) cautions that the term ‘oppression’ does not mean that one group o f people are the oppressors and another group are the oppressed. There is variability within this concept where, for example, oppressed members can also be oppressors. Mullaly (2002) elaborates, saying that oppression “is not a static concept but a dynamic and relational one” (p. 27). Mullaly (2002) clarifies the meaning o f oppression: What determines oppression is when a person is blocked from opportunities to self-development, is excluded from full participation in society, does not have certain rights that the dominant group takes for granted or is assigned a secondclass citizenship, not because o f individual talent, merit, or failure but because o f his or her membership in a particular group or category o f people, (p. 28) Mullaly (1997, 2002) outlines five forms o f oppression based on the work o f Iris Young (as cited in Mullaly, 1997, 2002): 1) exploitation, 2) marginalization, 3) powerlessness, 4) cultural imperialism, and 5) violence. Individuals with mental illness may be particularly vulnerable to powerlessness and marginalization. For the most part, Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 8 individuals who belong to ‘subordinate’ groups lack power and privilege (Hardy & Mawhiney, 2002). A sense o f powerlessness impedes individuals from making their own decisions. Furthermore, the subordinate groups are susceptible to ill-treatment from other dominant groups in society (Mullaly, 1997). Individuals who are living with a mental illness are also marginalized because they “constitute a growing underclass permanently confined to the margins o f society because the labour market cannot or will not accommodate them” (Mullaly, 1997 p. 147). In order to explore the lived experience o f the transition process from CYMH to AMH it is essential, from a structural perspective, to hear from the service users (the oppressed) who have lived through that experience. “It not only is empowering for oppressed persons to be heard, but it provides social workers with fuller, more accurate information” (Mullaly, 1997 p. 117). Giving voice to the service users in this thesis is an empowering step and will provide me with an accurate reflection o f the ‘lived experience’ o f the transition process. Mullaly (1997) refers to the divide between micro and macro level o f practice or between the personal and political aspects o f social work practice: Most social agencies are mandated to provide personal services without engaging in political or macro-level practice; and those agencies that focus on social policy, social action, or large social change tend not to see the provision o f personal services as part o f their mandate, (p. 165) This thesis addresses this issue by inviting service users, service providers, and administrators to share their thoughts and experiences on the transition process. Not only does the method o f data collection give power to those suffering from mental illness, by giving them a voice that will be heard, but it also invites the service providers and administrators to voice their opinions on the transition process. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 9 Transition from Child to Adult The progression from childhood to adolescence to young/early adulthood and then adulthood is a transformation which everyone experiences. It is inevitable, yet variable, in process and age from individual to individual. Moreover, some individuals receive limited support from their family members during the transition process from adolescence to adulthood, due to a variety of factors, for example, living in poverty (Davis, 2003). The transition from childhood to adolescence is generally determined by the onset o f puberty (Arnett, 2000; Vander Stoep, Davis, & Collins, 2000). At the turn o f the twentieth century puberty typically began between 13-15 years o f age (Arnett). This age of onset lowered throughout the 1900s and now the typical onset o f puberty lies between 10-12 years o f age (Coleman & Coleman, 2002), with one study (Herman-Giddens, et al., 1997) reporting pubertal onset as early as eight. The transition from adolescence to adulthood, however, is not clearly defined. During the transition to adolescence, most individuals continue to experience the structure o f the family home and the school environment. However, while transitioning to adulthood less structure is imposed on individuals from these supportive units (Schulenberg, Sameroff, & Cicchetti, 2004). “What makes this major transition unique is the potential for extensive changes in nearly all aspects o f life within a few short years” (Schulenberg, et al., p. 804). Arnett proposes a theory o f development which he terms “Emerging Adulthood.” This term focuses on individuals between 18 and 25 years o f age. Arnett argues that this is a period o f time in which individuals are no longer adolescents, but have not yet reached adulthood. However, societal structures do not allow for a period o f ‘Emerging Adulthood.’ Instead adulthood is legally constructed or defined by chronological age. Therefore, in society Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 10 once an individual has reached a certain age they are, in the eyes o f the law, no longer an adolescent, but an adult. When does one become an adult? Although western society has a chronological age for adulthood, these vary from province to province. Thus, there is no universal definition o f adulthood. For instance, the legal age o f marriage in BC without parental consent is nineteen and no-one under the age o f sixteen can get married without the consent o f the Supreme Court (Vital Statistics Agency, n.d.). However, in New Brunswick, the legal age o f marriage without parental consent is eighteen (Department o f Health, n.d.). As well as provincial differences in the legal age o f consent for marriage, there are also international differences. For example, in Scotland, the legal age o f marriage without parental consent is sixteen (General Register Office for Scotland, n.d.). This is just one example o f the global differences in the recognition o f people as adults. There are other examples of international and provincial differences: the legal age for 1) consumption o f alcohol is eighteen in Britain (British Medical Association, 2004), nineteen in BC, and eighteen in Alberta (Kendall, 2002); 2) obtaining a driver’s license is seventeen in Britain (UKCOSA, 2005) and sixteen in Ontario (Ministry o f Transportation, 2004) and 3) sexual intercourse is sixteen in Britain, fifteen in Sweden, fourteen in Italy, twelve in Spain (LoBaido, 2001), and currently fourteen in Canada, but may rise to sixteen (Tibbetts & Samyn, 2006). It is evident, then, that the global perceptions o f adulthood are very different. Goodwin and O ’Connor (2005) discuss the complex transition o f youth to adult and explore the literature on the way young people have made the transition to adulthood since the 1960s. They also outline a variety o f other factors that have impacted on the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 11 transitional experience for young people, including youth training schemes, postcompulsory education, and an increase in the number o f career options available to youth. Wyn (1996) states that the steps toward life as an independent adult have changed, primarily as a result o f the failure o f the labour market in its provision o f employment. Coles (1996) argues that secondary school education is an integral component that facilitates the transition to adulthood, as it provides an avenue for further education, training, and employment. The transition to adulthood was, until the 1980s, achieved by the accomplishment o f three milestones: 1) employment (after leaving school at the minimum age), 2) domestic transition (achieving family independence), and 3) housing transition (moving out o f the family home). However, this progression no longer follows a linear pattern, nor is it well chronologically defined. More youths stay in school longer and continue on to further education, requiring continued financial support from their family. This change in progression to employment has had a knock-on effect on the attainment o f the other two milestones. “The paths towards adulthood are diverse, involving complex relationships o f interdependence between young people and their parents, siblings, and other family members such as grandparents” (Wyn, 1996, p. 17). Although the three determinants o f adulthood, as outlined by Coles seem plausible, Arnett (1997, 1998) reports that individuals who are o f transitioning age rate these criteria below such aspects as taking responsibility for one’s self, making decisions for one’s self, and financial independence. The first two criteria discussed by Arnett are character qualities, while financial independence is more tangible and measurable. In comparison to the early-to-mid 1900s the transition period from adolescent to adult has Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 12 lengthened and no longer follows a uniform path (Arnett, 2000; Goodwin & O ’Connor, 2005; Schulenberg, et al., 2004). “The transition from adolescence to adulthood is one o f the most critical o f normative life transitions because it typically involves pervasive and often simultaneous contextual and social role changes” (Schulenberg, et al., 2004, p. 799). However, the path to adulthood is not a linear progression through which everyone travels identically (Cohen, Kasen, Chen, Hartmark, & Gordon, 2003; Shanahan, 2000; Schulenberg et al., 2004). Hiebert and Thomlison (1996) describe the transition to adulthood as “a repetitive, cyclical process enacted across time, involving multiple domains, and subject to many environmental and individual influences” (p. 54). Although everyone will reach adulthood, there is a degree o f variability in the type o f ‘adulthood’ which one obtains. For instance, individuals with mental illness may not achieve full independence from their parents, yet are still adults. Shanahan (2000) highlighted that the progression from childhood to adulthood is now variable. In recent decades, indicators o f the achievement o f adulthood (e.g., completed education and marriage), no longer follow a standard sequence (Cohen, et al. 2003; Shanahan, 2000). This can be seen in a general increase in the age o f first marriage (Schulenberg, et al., 2004). Shanahan posits that the variability in the achievement o f adulthood may be due, in part, to economic changes; for instance, the rising cost o f home ownership makes moving out o f the family home difficult. Despite Arnett’s (1997, 1998) findings that employment is not an integral factor in the attainment o f adulthood, obtaining employment is one o f the vital steps to reaching adulthood in the eyes o f society. This in itself is often a gradual process, beginning Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 13 typically with Saturday work while still attending high school, progressing to part-time work, and then full-time employment (Mortimer & Staff, 2004). Employment facilitates a sense “o f belonging and engaging in the social practices o f dependence, independence, responsibility and reciprocity” (Wyn, p. 17). However, Mortimer and Staff explored the impact o f early work experience on the mental health o f individuals transitioning to adulthood. Mortimer and Staff cited numerous sources evidencing the negative effects o f working during the adolescent years (e.g., alcohol and substance misuse, delinquency, and misbehaviour at school) as well as several sources indicating the positive effects o f employment during adolescence (e.g., coping skills, ethics, and responsibility). The authors o f this study concluded that “work quality is consequential for mental health” (p. 1062). Low self-esteem and elevated depression were linked to work stressors for adolescents. However, the same adolescents were found to be more resilient to work stressors four years after leaving high school. The evidence surrounding the impact o f early work on mental health is still mixed. Graduating from high school marks a time o f opportunity and struggle (Alestine & Gore, 1993). Graduation involves a multitude o f decisions and adjustments (e.g., which career path to follow, pursuing further education, and leaving the family home). These decisions and adjustments may happen at different times for different individuals; however, graduation from high school is a significant crossroads that, for most individuals, involves accepting some o f the responsibilities o f an adult (Alestine & Gore, 1993). Vander Stoep et al. (2000) determine that one reaches early adulthood when one has accepted “the responsibilities and privileges o f early adulthood” (p. 3). W ith this concept, no age is assigned to the term ‘adult.’ Although the definition from Vander Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 14 Stoep et al., m aybe plausible, for the purposes o f standardization and distribution o f services, a legal definition o f adulthood is necessary. However, as already evidenced, a universal definition o f adulthood does not exist. Furthermore, embedded in “the responsibilities and privileges o f early adulthood” (Vander Stoep et al., p. 3) is the underlying patriarchal assumption that in order to succeed in society, one must achieve independence, as opposed to fostering a philosophy o f interdependence (Propp, Ortega, & NewHeart, 2003). This former philosophy is in contrast to the ideals o f other cultures, for example, First Nations Peoples where interdependence is an essential function to their culture (Denzin, 2003; Tuhiwai-Smith, 2005). W ith the apparent need for independence, in ‘western’ societies, children and youth may be forced to become adults when they are not appropriately equipped to manage the responsibilities and privileges associated with adulthood (e.g., life skills). For the purposes o f transferring from CYMH to AMH in the province o f BC, the chronological age o f adulthood is nineteen years. There is no simple explanation as to why this age o f adulthood was exacted. Adolescents who ‘graduate’ from the foster care system at nineteen years o f age generally lose “contact with the people in the government care system who formed their social support network during their time in care” (Rutman, Barlow, Hubberstey, Alusik & Brown, 2001, p. 2). Rutman, Barlow et al. found from their research project on youth leaving care that the youth are still in need o f support (emotional and social) as they continue through the transition to adulthood. Presently, the support ceases once the youth reaches the age o f majority. Rutman, Barlow et al. made a variety o f recommendations in areas o f practice, training, research, and policy to address the lack o f support youth face upon leaving the foster care system (see Rutman and Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Barlow et al., for a full list o f the recommendations). A second report was produced following a pilot test o f a peer mentoring and life skills workshop series for youth transitioning from government care (Rutman, Hubberstey, Barlow, & Brown 2001). The workshop series seemed to be effective and there were plans outlined to further test the workshops. The authors anticipated a Stage Three report; however, this author could not locate any further documentation pertaining to this research project. It is unclear which, if any, o f the recommendations have been implemented. Although this research will not focus on individuals who were ‘wards o f the state’, this author felt it was important to make reference to some o f the relevant literature in this area and I acknowledge that this is an area in which further research is needed. Mental Health During the Transition to Adulthood There has been a great deal o f research exploring childhood effects on the psychopathology o f adults (Schulenberg, et al., 2004). Mental illness is frequently diagnosed during the adolescent years and yet as Schulenberg et al. highlight “the relative lack o f attention given to this period in theoretical conceptualizations and empirical investigations suggests an assumption that the events and experiences constituting the transition to adulthood are relatively inconsequential to the course o f psychopathology and mental health” (p. 799). Rao, Daley, and Hammen (2000) report that “adolescence is the highest risk period for onset o f both depression and substance use disorder” (p. 215). Research demonstrates that individuals between the ages o f 15 and 24 years o f age have the highest rates o f mental illness (Mills, 2003; Offord, et al.,1996; Statistics Canada, 2003). Kessler, Avenevoli, and Merikangas (2001) state that the risk o f depression begins in adolescence and follows almost a linear increase through to the mid-20s. Other Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 16 studies have found that child or adolescent onset o f depression continues through to adulthood and may be a predictor o f severity o f illness in adulthood (Franko, et al., 2005; Lewinsohn, Rohde, Klein, & Seeley, 1999; Lewinsohn, Rohde, Seeley, Klein, & Gotlib, 2000; Rao, Hammen & Daley, 1999; Rao, et al., 1995). There is also evidence that the diagnosis o f schizophrenia during childhood or adolescence remains throughout the adult years and often results in a more severe form in comparison to adult-onset schizophrenia (Alaghband-Rad, et al., 1995; Hollis, 2000; McClellan & Werry, 2001). Individuals suffering from an anxiety disorder often have an early onset with the average age o f onset being 13 (Shields, 2005). Wilkins (2004) also found that 41% o f individuals with bipolar I disorder experienced onset before 17 years o f age. During the transition to adulthood, individuals are faced with a multitude o f decisions. Examples, as discussed above, include which career and educational path to follow, and when to leave the family home. Individuals suffering from a mental illness, such as depression, likely experience difficulty in making the life-path decisions (Gutman & Sameroff, 2004; Lehman, Clark, Bulbs, Rinkin, & Castellanos, 2002; Rao et al., 2000). M any individuals with mental illness do not have the appropriate life skills to make important life decisions during the adult years. These individuals are also more likely to be living in poverty and to have failed to complete high school (Davis, Banks, Fisher, & Grudzinskas, 2004; Lehman et al.,). Davis et al. (2004) explored the patterns o f criminal offences in individuals with mental illness during the transition to adulthood and found that 25% o f the sample received “a moderate number o f charges that peaked during late adolescence and declined markedly by age 25” (p. 361). However, the study also reported that almost 20% o f the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 17 sample followed a serious offence path that began during adolescence and increased through young adulthood. “The ages o f the peak probability o f being charged, 18 through 20 years o f age, coincide with the ages at which systems often identify youth as no longer being ‘children’” (p. 364). Greenbaum and Dedrick (1996) found that nearly two thirds o f their sample o f adolescents with an emotional or behavioural disturbance had been in contact with law enforcement where they were believed to have committed a criminal offence. This was a longitudinal study where children and adolescents were followed annually over the course o f seven years. The findings in relation to contact with law enforcement were taken between the fourth and sixth years o f the study. It is unclear how old the participants o f the study were at this time, but the age range for the study was nine to twenty-one. There appears to be, as suggested by Davis et al. (2004), a link between the increase in criminal offences and decreased use o f mental health services. However, this association needs further research. Youth with mental illness encounter greater difficulties than their peers without a mental illness, as they progress through the transition to adulthood (Clark & Davis, 2000; Davis, 2003; Davis et al., 2004; Davis & Sondheimer, 2005). As Davis (2003) articulates, “currently, transitions are guided more by bureaucratic constraints than by young people’s developmental needs” (p. 496). In general, youth with mental illness (or as some authors [e.g., Clark & Davis] describe it, Serious Emotional Disturbance (SED)) are less prepared to ‘be’ an adult by the legal definition based on chronological age. Davis and Vander Stoep (as cited in Davis, 2003) found in their study that more than half o f the youth who had a mental illness had not completed their high school education. As such, they were less employable and more likely to live in poverty or become homeless Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 18 (Lehman et al., 2002). There was also a decline in clients’ use o f mental health services following the transition to adult services. Cohen and Hesselbart (1993) found that individuals between the ages o f 18 and 21 years were less likely to use mental health services in comparison to younger individuals. This is likely a result o f barriers (e.g., eligibility criteria and funding) that adolescents face in accessing appropriate services once they ‘graduate’ from child mental health services (Davis, 2003; Davis et al., 2004). These studies are all from the United States. This author could not locate any literature indicating a similar pattern o f decline in Canada. Transition to adulthood is difficult for all, but for youth exposed to risks (e.g., foster care, drug and alcohol problems, mental illness) it can be more difficult. This truth is accentuated by the fact that various supports on micro, mezzo, and macro levels are not consistent (McKay, Reid, Tremblay, & Pelletier, 1996). For instance, ‘blended’ families are documented to increase the risk o f a difficult transition to adulthood for youth (McKay, et al.,). At a mezzo level, school systems have been criticised for the apparent ineptitude o f the graduates. Finally, at a macro level, governments have been criticised for not addressing the many needs o f youth. The youth sector receives the least funding and the least services o f the Canadian population (Minden, 2004). Furthermore, provincial and federal governments only invest a small portion o f finances in mental health (Nelson, 1996). The transition to adulthood for individuals with mental illness is also difficult because it involves a transition in mental health services. Upon reaching a certain age (nineteen in BC) there is a shift to adult mental health services. This transition o f mental health services for clients in BC has not, to this author’s knowledge, been examined. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 19 Hence an exploration into the experience o f the transition o f mental health services for clients was deemed necessary. It is also necessary to obtain the perspective o f service providers and administrators within mental health services to build a holistic picture o f the transition from child and youth mental health to adult mental health services. Prior to exploring the transition process in detail, it is necessary to provide an overview o f the nature o f mental health in Canada and within BC. Canadians ’ Mental Health Twenty percent o f Canadians are impacted by mental illness at sometime in their life (Health Canada, 2002a, 2002b; Lesage & Vasiliadis, 2006). However, less than 50% o f those with mental illness seek professional help (Cakebread, 2003; Harrison & Britt, 2004; Lesage & Vasiliadis; Statistics Canada, 2003). O f those individuals that do seek professional help, the majority see their general practitioner (Fournier, Lesage, Toupin & Cyr, 1997; Lesage & Vasiliadis; Statistics Canada, 2003; Vasiliadis, Lesage, Adair, & Boyer, 2005). However, 14% o f Canadians do not have a general practitioner, making it difficult for them to access not only mental health services but general health services (Gagnon, 2004). Those who are personally affected by a mental illness often experience onset o f their illness during adolescence or early adulthood (Balageer, Malla, Manchanda, Takhar, & Haricharan, 2005; Health Canada, 2002b). Health Canada (2002a, 2002b) defines mental illness as “alterations in thinking, mood or behaviour (or some combination thereof) associated with significant distress and impaired functioning over an extended period o f time” (p. 16). The prevalence o f mental illnesses is greater among females than males and is highest amongst individuals between the ages o f 15 and 44 (Health Canada, Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2002b). This latter information was based on hospitalization data only. However, Hartung and W idiger (1998) reviewed the sex ratios reported for mental disorders in The American Psychiatric Association’s Diagnostic and Statistical Manual o f Mental Disorders - 4th edition (DSM-IV; APA, 1994). The authors found that almost all disorders diagnosed during childhood and adolescence (17 o f 21) are more common in males, but that adult disorders are more evenly distributed between the sexes (35 are more common in males, 31 in females, and 14 equal distribution). Statistics Canada (2003) also found from the Canadian community health survey that the prevalence o f mental illness and substance dependence was about the same between the sexes (11% women, 10% men). Therefore, there is still a great deal o f discrepancy surrounding the prevalence o f mental illnesses between the sexes. Considering that the onset o f mental illness frequently occurs in adolescence or early adulthood, there is potential for significant impact on the person, particularly in regards to education, career, and personal relationships (Ehmann & Hanson, 2004; Health Canada, 2002a, 2002b). Not only is the individual experiencing the mental illness affected, but family members are also significantly impacted (Health Canada, 2002b; Lopez, Nelson, Snyder, & Mintz 1999). Family members often have to make difficult decisions regarding the treatment and course o f action for their family member experiencing a mental illness (e.g., perhaps sending the individual away to another community for appropriate treatment), and m ay also be involved in long-term care for the individual (Health Canada, 2002a). Although, Davis (2000) states that some family circumstances (e.g., other children, employment, and finances) may prevent family members from fulfilling supportive roles. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 21 Currently, most individuals afflicted with mental illness are treated within the community setting (Pollack & Feldman, 2003). Prior to the 1950s, policies and practices for caring for those with mental illness were vastly different. Individuals were treated primarily within a psychiatric hospital setting, often for an indefinite period o f time. As Pape and Church (1987) state, “Prior to roughly 1960, the dominant ideology in mental health centred on medicine and institutions” (p. 20). During the 1950s and 1960s there was a shift from hospital treatment to treatment in the community, a process referred to as deinstitutionalization or decarceration (Scull, 1977). A number o f factors contributed to this transformation in usual methods o f care, including the introduction o f psychotropic medications (Drake, Green, Mueser, & Goldman, 2003; Scull), campaigns for more humane treatment o f the mentally ill, and the fact that many hospitals were in dire need o f refurbishment (Scull). However, Macnaughton (1991) argues that the deinstitutionalization process commenced “without the existence o f adequate, accessible community supports” (p. 4). In Canada, the current method o f care for treating people with a mental illness is community-based and when hospitalization is required, the majority o f patients (86%) are placed in general, not psychiatric, hospitals (Health Canada, 2002b). “Schizophrenia is among the most severe o f the mental illnesses, and therefore makes up a large (21%) proportion o f hospital mental health separations” (Canadian Institute for Health Information, 2005, p.iv). (Separations in this document referred to departure from the hospital either via a discharge order or death, p. C-2.) As a result, individuals suffering from schizophrenia were more likely to spend longer in hospital and more likely to be discharged from a psychiatric hospital as opposed to a general hospital. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 22 The onset o f psychosis generally occurs earlier in males than females. Men often develop psychosis in their mid-to-late teens or early twenties, while women experience onset in their early twenties or thirties (Lines, n.d.). In Canada, 52% o f general hospital admissions for schizophrenia are among individuals between the ages o f 25 and 44 years o f age (Health Canada, 2002a). Following the Health Canada report (2002), the focus within the mental health care system has been modified. A holistic approach to care is being implemented, including: education for service users and family members, community education, selfhelp/mutual aid network, primary and speciality care, hospitals, crisis response systems/psychiatric emergency services, case management/community outreach programs, and workplace supports. In BC, a specific mental health plan was developed for children and youth. British Columbia’s Children’s Mental Health The World Health Organization (as cited in Shatkin & Belfer, 2004) made recommendations in 1977 that Child Mental Health Plans should exist in every country throughout the world. However, Shatkin and Belfer found from their investigations, that not one country had a “mental health policy or action plan specifically devoted to children and adolescents” (p. 106). The authors do acknowledge that it is possible that they had missed some countries where mental health plans do exist, and indeed Canada was not acknowledged in their paper as having any form o f mental health plan. However, in 2003, The Child and Youth Mental Health Plan o f BC was formulated, an unprecedented move in Canada. The plan may not have been completed or available at the time o f Shatkin and Belfer’s writing. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 23 In the Child and Youth Mental Health Plan o f BC (CYMH plan), statistics on the health o f children were provided. It is estimated that 1 in 7 children in BC have mental illness and as such, mental illnesses constitute the greatest health concern for children. The plan acknowledged that services provided to children “have been poorly coordinated and insufficient to meet the needs o f BC’s children and families” (p. i). Furthermore, most o f northern, rural, and remote BC suffers from an acute shortage o f mental health services (Maddess, 2006). In her assessment o f health care delivery in northern BC, Hunter (2006) found that mental health care was “the most underserviced aspect o f professional health care in non-urban areas” (p. 174). Based on the evidence they were faced with, MCFD and the Ministry o f Health Services (MOHS) acknowledged that there was evident need for a CYMH plan. Paramount within the CYMH plan is timely and effective treatment for children and their families. Furthermore, improved coordination o f services between the two Ministries is vital. Thus, one o f the changes deemed essential is improved coordination o f transitions between child and adult mental health systems, and between the community and hospital. The latter transition will not be discussed here, as the focus is on the former. As part of the CYMH plan, a Joint Ministry Working Group (2002) was established to look specifically at the two transition processes. W ith regards to the transition between the child and adult mental health system, the working group determined that it was essential to begin transition planning when youth are seventeen years of age. Collaboration between the two Ministries was needed to ensure an integrated transition process with regards to service planning and the development o f service protocols. This group also presented a variety o f recommendations to the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 24 Ministries, including: 1) the development o f a provincial system to aid in planning and coordinating service delivery at the local, regional, and provincial level; 2) a data-set capturing “key input and output variables to enable an annual evaluation o f amount, type and continuity o f services” (p. 4); 3) the development o f standards o f practice for transitioning youth; and 4) evidence-based program options. A regional transition protocol was developed in 2003 between MCFD and Northern Health. This protocol was based on the provincial Joint Ministry Working Groups recommendations. The recommendations from the Joint Ministry Working Group (2002) will be explored in greater detail in this research project to evaluate if any o f the recommendations have been implemented in Prince George. If any or all o f the recommendations have been implemented, the opinions and experiences o f these recommendations will be heard from service providers and administrators. Service users will not be asked about the Joint Ministry Working Group, as they would not be expected to know about it. Suggestions for improvement o f the transition process will also be sought from the three groups o f participants. Mental Health Services in Prince George Below is a breakdown o f the community mental health services provided to children and youth through Intersect and to adults through AMH services. I then provide a detailed explanation o f Early Psychosis Intervention (EPI), outlining its origins and some o f the research into its applicability. I believe this is necessary as EPI is a relatively new process, with the EPI team being active in Prince George for only two years (personal communication, D. Dobrinsky, December 1, 2005). Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 25 Child and Adolescent Mental Health Services through Intersect The information provided below was gathered from the Intersect website, www.doorsofhope.com/intersect/home in June 2006. Intake services. An intake counsellor will meet with the child and his/her guardian to determine what, if any, services are appropriate. If services from Intersect are deemed appropriate the client will be assigned a case manager. Clients are informed that they may be put on a waiting list for services. Crisis assessment and management. In times o f emergency (e.g., when a client threatens to harm him/herself or others), Intersect staff will do an immediate risk assessment and determine an appropriate course o f action (e.g., hospitalisation, referral to other community services). Short-term counselling. This usually comprises between six and eight sessions. Counselling may be individually or family based. This form of counselling focuses on the strengths that are present within the child and the family unit. Specialized assessment. If psychological or psychiatric assessment is deemed necessary these services are available on-site. Groups. A variety of group programs are available at Intersect, including, parenting, anger management, and social skills. Long-term counselling. In some instances counselling over an extended period o f time is required because o f concerns surrounding the mental illness or possible environmental risks. New Directions program. This program is available to youth (12-17 years o f age) who have been involved with the criminal justice system. Referrals are made through Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 26 Youth Probation. The program provides avenues for developing personal and social skills through various wilderness and outdoor excursions. Intersect school program. This program offers education to youth (14-18 years o f age) who are receiving other services from Intersect, and are not enrolled in other programs offered from the school district o f Prince George. Adult Mental Health Services The information provided below is based on the organizational chart o f mental health and addiction services for the Northern Health Authority (NHA) dated April 2006. Attached to the chart was a glossary providing brief information o f the various services available through the NHA. Community Response Unit (CRU). This team acts as a screening unit for adult mental health and addictions services. Clients meet with clinicians from this team to determine the most appropriate service for him/her. The team also provide crisis response services and may see clients in the interim while they are waiting for availability with the relevant service. Community Acute Stabilization Services Team (CASST). This team is available to adults requiring services for mood or anxiety disorders, as well as various other mental disorders. Community Outreach and Assertive Services Team (COAST). This team provides two forms o f service for adults living with a serious and persistent mental illness. The first is an assertive component for high needs individuals and the second is case management for other adult clients. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 27 Early Psychosis Intervention The EPI team in Prince George provide services to both youth and adults. They are funded through the MOHS and are community based. Below is an in-depth explanation o f EPI outlining how it is generally implemented internationally. Consideration is given to issues that may arise in northern communities such as Prince George. I then outline some o f the research on EPI that has been conducted in BC. Early Psychosis Intervention - global results. Much o f the early work in EPI began in Australia in 1992 (Early Psychosis Prevention and Intervention Centre (EPPIC)). Common first signs o f early psychosis include a decline in functioning, frequent change o f occupation and place o f residence, depression, anxiety, and insomnia (Macnaughton, 1998). EPPIC also outlines some o f the common symptoms: confused thinking, false beliefs, hallucinations, changed feelings, and changed behaviour. McClellan, Breiger, McCurry, and Hlastala (2003) outline examples o f premorbid problems, including social withdrawal, academic difficulties, and disruptive behaviours. Macnaughton (1998) outlines that the goals o f EPI are to limit the duration o f the psychosis, prevent relapse, and promote a full recovery. This would then decrease the long-term disability that engulfs most people and ease the long-term human and economic burden o f psychosis. First episode psychosis has been split into four phases: 1. prodromal, 2. acute, 3. early recovery, 4. late recovery (Ehmann & Hanson, 2004a; Lines, n.d.). The first phase constitutes the period prior to the development o f any psychotic symptoms. Ehmann, Hanson, and Friedlander (2004) define prodrome as “A period o f disturbance that represents a deviation from a person’s previous experience and behaviour prior to the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 28 development o f florid features o f psychosis” (p. 85). Often these go undetected until the onset o f the classic symptoms and are thus identified retrospectively. Examples o f these early indicators are: depression, mood swings, sleep disturbances, loss o f energy or motivation, and deterioration o f work. While these indicators are not in and o f themselves essential to the development o f psychosis, they take on greater meaning in individuals with a higher risk profile, for example, those with a family history o f psychosis (Lines, n.d.). The acute phase marks the onset o f psychotic symptoms: hallucinations, delusions, and marked thought disorder (Lines, n.d.; Mental Health Evaluation and Community Consultation Unit (Mheccu), n.d.). Individuals commonly present for treatment during this phase. Hospitalization may be a necessary part o f the process at this time, in order to stabilize the individual. Stabilization often requires the use o f psychotropic medication. As well as managing individual psychotic symptoms, treatment o f accompanying conditions (e.g., substance abuse) can begin within the hospital environment. The hospital also provides a safe environment to begin psychosocial recovery. However, in northern communities individuals may have to be transferred to tertiary referral centres in a major city. This transfer can have a tremendous impact on the individual and their families (e.g. separation from family, fear/anxiety). The period o f early recovery spans the six months following initiation o f treatment. The focus during this period is on the formulation o f an individualized psychosocial framework for further recovery. Ehmann and Hanson (2004c) outline that psychoeducation is an important component in this phase, as well as monitoring for side effects o f medication. Included in this phase are individual and family counselling and Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 29 other cognitive skills based therapies (Lines, n.d.). EPI requires consistent services, which are often lacking in northern communities. In some northern communities there is only one nurse or social worker who provides generalist services to the entire community. The skills o f these professionals may be limited, partly because o f a lack o f opportunity for further education and lack o f resources. The final phase consists o f the 6-18 months following the completion o f phase three. During this phase, decisions are made on medication management and other treatment supports. There are reported relapse rates o f 50% within the first ten months following termination o f medication for first psychotic episode (Lines, n.d.). Therefore, it is essential that a plan is in place to help combat this possibility. However, within northern communities, support networks are often lacking, reducing the chance that the individual’s psychosis will be managed successfully. Research demonstrates the applicability o f informal helping networks in rural and remote communities (e.g., Cossom, 2002; Fuchs, 1997). Informal support groups may be applied, if there are no forms o f professional support groups within the community. There is convincing evidence that the longer the duration o f untreated psychosis, the poorer the outcome. Resistance to treatment also appears to increase with duration o f untreated psychosis (DUP) (Edwards et al., as cited in Lines n.d.; Rowston, 2002; Scholten, Norman, & McDonald, 2003). It is possible that there is a critical period in the development and progression o f psychosis. W ith this idea comes an increase in advocacy for the adaptation and expansion o f EPI as a means to reduce DUP. The longer the DUP is, the greater the deterioration in the individual. Deterioration seems to be aggressive in the first 2-3 years prior to treatment (Lines, n.d.). Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 30 Detecting psychosis early is only o f benefit if the treatment process can be implemented and resources are available to follow through (Falloon et al., as cited in Lines, n.d.). There are three forms o f EPI treatment that have been found to be beneficial in clinical trials: antipsychotic medications, family education and support, and programs of intensive community treatment. These need to be used consistently. Low dose atypical neuroleptics (the newest class o f medications, effective in treatment o f positive and negative symptoms) have been deemed beneficial. Ehmann and Hanson (2004b) report that treatment should begin with an atypical antipsychotic (p. 42). However, compliance with medications is crucial, not just to ameliorate symptoms, but to prevent relapse. Poor compliance is more common with young sufferers, possibly as a result o f side effects o f the medication, or resolution/reduction o f symptoms (Kampman et al., as cited in Ehmann & Hanson, 2004c). Combining psychoeducation and family support with low dose neuroleptics has been found to be beneficial in ensuring young people stay on their treatment plan. Linszen et al. (as cited in Lines n.d.) posits four reasons for the increased interest in psychosocial interventions: 1) non-compliance with medications, 2) persistence o f negative symptoms, 3) deinstitutionalization, and 4) the concept of ‘expressed emotion’ (EE). As discussed earlier, the deinstitutionalization process resulted in an increase in community treatment. However, the preparedness o f communities to manage those with psychosis was lacking. As such, many became homeless and sold their medications on the streets in order to survive. As Macnaughton (1991) writes, the deinstitutionalization process commenced “without the existence o f adequate, accessible community supports” (p. 4). Therefore, medications alone do not suffice as treatment for psychosis in the community. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 31 Macnaughton (1998) addresses the support o f family as an essential component in treatment. Macnaughton acknowledges that this may not be feasible due to logistical reasons, yet he does not expand on what these logistical reasons may be. In northern communities there are a variety o f logistical reasons that can prevent family members participating in treatment; for instance, travelling to the community where the treatment is taking place, inclement weather, financial cost o f travel, and work commitments. Moreover, family members may not realise the importance o f their involvement in the care for the family member with the psychosis. Research has shown the impact o f EE on relapse rates in clients. For instance, Lopez, Nelson, Snyder, and Mintz (1999) state that certain family characteristics may contribute to a negative outcome/relapse within nine months of follow-up. These include the belief that the individual with schizophrenia can control their behaviour and symptoms, and lack o f family support. In addition, the family’s level o f criticism towards the individual predicted relapse. It is essential that families receive support when the client returns home to their care, to avoid conflict and address issues that may arise as the entire family adjusts to their new situation. Likewise, if clients are not returning to their family homes, for whatever reason, it is important that family members are still supported as they help the client adjust to a relatively independent life. Falloon et al. (as cited in Lines n.d.), found that a full complement o f treatments (medication, case management, family education, problem solving, and social skills) reduced the one year poor outcome rate to 14%. Early Psychosis Intervention —BC. Macnaughton (1998) reports that it takes, on average, three years from the onset o f symptoms before an individual will seek help for their symptoms. Once symptoms become acute (phase two), the average time to seek Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 32 treatment is one year. The three main hurdles to seeking help, as identified by Macnaughton, are: 1) not recognizing the problem, 2) building the motivation to seek help, and 3) difficulty in accessing care/treatment. The author offers general suggestions for addressing all three barriers. The primary focus is on education, (the general public, families, and individuals) on a macro, mezzo, and micro level. For those individuals with an increased risk o f developing psychosis (e.g., having a first degree relative with schizophrenia), education should be a key component o f group interaction. A macro feature o f education is to address the stigma associated with psychosis. Not only is it necessary for the public to be educated about psychosis, but professionals (e.g., clinicians, counsellors, and nurses) also need to be trained in recognizing the early symptoms o f psychosis. Macnaughton discusses the fact that professionals who have not received EPI training may minimize the seriousness o f the presenting symptoms and subsequently fail to refer clients to appropriate services or fail to monitor the client closely. A further problem that presents for professionals is the risk o f misdiagnosing psychosis as depression, as depressive symptoms are often present with psychosis (e.g., Siris, 2000). Macnaughton (1998) summarises client and family experiences o f first hospitalization for psychosis. No information is provided regarding those occasions in which clients are sent to urban centres for hospitalization from northern communities; for instance, the separation/isolation that clients and families may experience would likely have an impact on the effectiveness o f treatment, and future outcomes for the client. Macnaughton suggests a more developed referral network to ensure a smoother “pathway to care” (p. 6). Again the problems surrounding referrals in northern communities are not Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 33 discussed. There is reference to the importance o f minimizing the distress o f the initial treatment process for young clients as otherwise they m ay not remain in appropriate care. Part o f that initial process is the need for appropriate psychoeducation in relation to diagnosis, treatment, and community supports that are available for clients. By providing accurate information to clients, the hope is that this would foster control and a sense o f hope and belief in recovery for the individual. Macnaughton (1998) makes reference to the benefits o f support groups in psychosis management. Clients are often sceptical about participating in a group as they do not want to associate with other ‘sick people.’ However, seeing people at different stages in their treatment for psychosis allows clients to see that their psychosis can be managed successfully. Support groups should be used as an adjunct to individual therapy. It is not recommended that people attend group support until stabilized. Ehman, Yager, and Hanson (2004) reviewed the literature on EPI and posed some suggestions for the clinical application o f EPI. They conclude that cognitive-behavioural therapy and psychoeducation are important components o f EPI. In addition, they also stress the importance o f family involvement. However, these authors also do not address the fact that this may not always be a feasible option due to a variety o f issues, (e.g., travel issues and other family commitments). They stress that more research on the effectiveness o f group and individual therapies are essential and that long-term evaluations are needed to ascertain the longitudinal effectiveness o f EPI. Ehmann (2004) reviewed surveys that had been sent to hospitals and communities throughout BC, addressing EPI. Three types o f surveys assessing the application o f EPI were distributed. The first survey addressed inpatient care, while the second and third Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 34 targeted community care. While these surveys did not emphasise differences in geographical regions, two northern communities were part o f the survey. This author will highlight results specific to those northern communities. Within the survey were questions addressing the role o f the Early Psychosis Initiative. This initiative was a short-term measure initiated by two Ministries: MCFD and MOHS. The initiative disbanded following the publication o f the best practice guidelines in 2002. However, with the closure o f the Initiative came a breakdown in communication between the two Ministries. To address this issue, the BC Schizophrenia Society resumed responsibility o f those roles previously held by the Initiative. The BC Schizophrenia Society arranged for the survey o f Early Psychosis Programs throughout BC. Since the initiation o f these surveys there were two significant changes within the province: 1) the first Canadian Child and Youth Mental Health Plan produced by MCFD for BC (2003), with emphasis on the development and continuation o f EPI, and 2) more funding became available for continuing research and training in EPI from both public and private sources. Therefore, Ehmann (2004) acknowledges that some o f the information and analysis presented may now be redundant. MCFD provided $120,000 to the Fraser Health Authority to develop and implement a training program for EPI. “Child and youth mental health clinicians and physicians, especially those in rural and remote areas, (were) invited to participate in the training” (MCFD, n.d.). Fifty sites were issued surveys to assess community services. Responses were received from 23 o f the sites. Twenty-five sites were issued surveys to assess inpatient services. Responses were received from thirteen sites. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 35 O f the thirteen responses from the hospital surveys, none were obtained from the Northern Interior. Ehmann (2004) provided a list o f the hospitals that were used in the analysis and there are also none from the North West, but the author did not highlight this fact in the report. It is possible that this is because there was one response from the North W est in the community survey, whereas in either survey there were no responses from the Northern Interior. Therefore, for the hospital survey the one representative from the Northern Health Authority was Dawson Creek, and for the community survey, the representative was from Terrace. The results from the survey were mixed. All the hospital respondents had found the Early Psychosis Initiative helpful; however the practices within the hospital did not necessarily reflect the best practice guide that the Initiative had produced in 2002. Also, more than half the hospitals had arranged training for their staff in EPI. Dawson Creek was not one o f those hospitals. W ith only data from one hospital in the north, it cannot be concluded if this is reflective o f the rest o f northern BC. The analysis found that EPI practices within hospitals where training had been provided were better than those who had not received training, and those hospitals who had received training followed the protocols in the guide more closely. Results from the community survey showed that Terrace was one o f three sites where self/family referrals were not accepted and the teams predominantly served adult populations (age 19-30). Furthermore, Terrace reported a lack o f integration between inpatient and community services, compared with ten sites who stated that integration between the two was clear. Terrace was also one o f two sites that did not employ public education within their community. As previously discussed, public education is integral Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 36 in successful implementation o f EPI. It would be worthwhile exploring why this was so and problem-solving this issue. By doing this, it could benefit other northern communities, who are perhaps struggling with implementing this component o f EPI. One surprising result from the community survey was the fact that three sites administered psychotropic medications to those who were ‘at risk’ for developing psychosis, despite this not yet being approved practice. The response from Terrace to this question was missing. Ehmann (2004) concluded that “this practice is highly controversial since a false positive identification places individuals at risk for stigma, anxiety, family discord, side effects, and other negative repercussions” (p. 30). He further emphasises that if this practice is continued, patients and family members should be made aware o f the risks, results should be measured appropriately and then published for the benefit o f others. There is some research indicating that implementing treatment in ‘at-risk’ populations for psychosis has proved beneficial, at least in the first few months, compared to controls (Simon, Conus, Schneider, Theodoridou, & Umbricht 2005). However, Ehmann’s recommendations for further documented research are still valid. Ehmann (2004) stated that the intent o f the survey was to act “as a reference point that would allow comparisons to be made across different geographical regions and over time” (p. 8). However, the population o f the sites surveyed ranged from 17,000-600,000. This population size does not fit Z a p f s (2002) definition o f rural communities o f 10,000 or less. Therefore, although the report by Ehmann claimed to cover all geographical regions, he did not define what a ‘region’ was. One is left to speculate if he is referring to the health regions o f BC, or some other ‘region.’ Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 37 Early Psychosis Intervention in Prince George. The Early Intervention Program in Prince George has an information document providing descriptions o f the services offered within the city (Northern Health Authority, n.d.). As well as an EPI program, community addictions and case management, and drug prevention programs are also offered. In Prince George, the criteria for referral to the Early Intervention Youth Community Services (EIYCS) are: experienced a recent first acute psychotic episode, experiencing psychotic symptoms, requiring transition from youth to adult Mental Health Services and has experienced a psychotic episode, and is between the ages o f 14 and 30. Self-referrals are accepted, as well as referrals from parents and family physicians. Following the initial referral, the person will be assessed within 48 hours and an appropriate care plan determined within one week. If accepted, clients can remain in the program for a maximum o f two years, or, until they are o f age to transfer to adult Mental Health Services. The EPI services include education for client and family, developing an individual treatment plan, and referrals. There are some support groups available for individuals with early psychosis within Prince George. These include: a community recreational therapy group (TRECS group) for individuals 15-18, adult life skills programs, adult social/recreational programs, parent support and family work, and housing programs. The TRECS group is an open, continuous program. No further information is provided for the other groups. If symptoms have not become manageable within those two years, or clients need continual support, they will be referred for long-term services via the ‘Community Outreach and Assertive Stabilization Team’ (COAST). No reasons are offered as to why Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 38 there is a two year cut-off for services. Some o f these issues were discussed during the focus group with the EPI team in Prince George and will be discussed in future chapters. Dissemination o f Research It is hoped that the outcomes o f this research will prove beneficial to both CYMH and AMH for any future planning which these sectors undertake. I plan to provide CYMH and AMH with a copy o f the research, including possible suggestions for improving the transition process. It is my hope that some o f these suggestions will be implemented or considered in future policy developments o f the Ministries. Furthermore, this research can serve as a stepping-stone to future research on the transition process. For instance, exploring the transition experience for youths who were ‘wards o f the state’ could have similar benefits for the two Ministries. Not only are ‘wards o f the state’ transitioning their mental health services, they are also transitioning out o f the ‘system’ and into independence (Propp et al., 2003). Therefore, the experiences o f individuals who have been ‘wards o f the state’ may differ from those who participate in this study. McMillen, et al. (2005) also highlight that more research on mental illness in individuals who are or were ‘wards o f the state’ is needed. McMillen et al. advocate for the continuation o f services for individuals in the care o f the state who are experiencing a mental illness and who are transitioning out o f the foster care system. Other examples for furthering this research include comparing the structure o f service delivery in different provinces or countries, examining the impact o f the division o f mental health services in southern and urban versus northern and remote communities o f BC, and the differences in services for First Nations versus non-First Nations populations. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 39 Definitions This research study was conducted in Prince George, BC, the largest city in the northern half o f the province. Prince George is considered to be a northern community based on the distribution o f the province into five health regions. Prince George is part o f the Northern Health Authority (NHA) which is separated into three geographic operating divisions: Northern Interior, Northwest, and Northeast (Northern Health, 2006). Prince George is part o f the Northern Interior region o f the NHA (see Appendix A for a map of the NHA). Defining a community as northern has varied throughout the literature (Schmidt, 2000). “However, the various definitions tend towards an idea o f marginalization that is cast within a framework o f relative isolation and remoteness” (p. 339). The way ‘rural’ is defined in literature from the United States is not appropriate to Canada. The concept of ‘rural’ in the United States is different than ‘northern/remote’ Canada as the population of ‘rural’ communities is generally higher and access to urban communities is easier (G. Schmidt, personal communication, September 14, 2005). Furthermore, Zapf (2002) uses a population threshold o f 10,000 to distinguish between urban and rural communities. As o f the last census, Prince George has a population o f 72,406 (Statistics Canada, 2001) and therefore, does not meet Z ap f s requirements for being rural. As such, this research will refer to Prince George as a northern community. This research will consider the lived experiences o f individuals living with serious/severe mental illness. Ruggeri, Leese. Thomicroft, Bisoffi, and Tansella (2000) discuss the definition o f serious/severe mental illness. There is no international definition of the term. Narrow et al. (1998) compared three different definitions o f severe mental illness in children and adolescents and concluded that “Definitions o f severe mental Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 40 illness or serious emotional disturbance should be inclusive enough to identify children who are in need o f intensive services” (p. 1607). This, in itself, is a vague definition to make. The American Psychiatric Association’s Diagnostic and Statistical Manual o f Mental Disorders - 4th edition Text Revision (DSM-IV-TR; APA, 2000) does not define serious/severe mental illness, but instead offers a general definition for mental disorder. Within the context o f certain disorders, one can be rated as having a mild, moderate, or severe form o f the disorder. Furthermore, Axis V (Global Assessment o f Functioning Scale) rates the severity o f the mental illness in terms o f its impact on the individual’s ability to function. Although there are guidelines to forming a diagnosis, the diagnosis is still made at the discretion o f the physician or psychologist. For the purposes o f this research, serious/severe and persistent mental illness refers to an individual who has been given a DSM-IV-TR diagnosis and has been receiving treatment for an unspecified period o f time. Throughout this research I use the phrase ‘lived experience(s).’ The goal o f phenomenological research is to describe the lived experiences o f the participants. “Lived experiences are those experiences that reveal the immediate, pre-reflective consciousness one has regarding events in which one has participated” (Kleiman, 2004). In this instance, the lived experience refers to the participant’s experience o f the transition process from CYMH to AMH. Specifically, this research will explore what the transition process is/was like for three groups o f participants, not what mental health services are like once a client is accessing AMH. This research will focus on the experiences o f service users, service providers, and administrators o f both CYMH and AMH. The terms “service users” and “clients” Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 41 will be used interchangeably throughout this research proposal in reference to those individuals receiving adult mental health services and who have recently (within the last year) experienced the transition process from CYMH to AMH. For the purposes o f this . research, service providers are employees from Intersect (funded through CYMH), the Community Response Unit (CRU) (AMH), and the Early Psychosis Intervention (EPI) team, who work with both children and adults. This group may incorporate professionals from a variety o f disciplines, including social workers (BSW or MSW level), mental health counsellors (e.g., MEd Counselling), nurses, physicians/psychiatrists, and psychologists. “Administrators” in this research refers to the regional manager o f adult mental health services, and the administrator o f Intersect. Although service providers and administrators do not live through the transition process from CYMH to AMH, they are active participants in facilitating the transition for clients. As such, ascertaining their observations and experiences o f the transition process is important in order to gain a holistic perspective o f this phenomenon. As discussed above, the definitions o f child, youth, young adult, and adult are variable. For the purposes of this research project, the terms child and youth will refer to individuals under the age o f nineteen and the terms young adult and adult will refer to those nineteen and older. This is based on the age at which the transition o f mental health services is scheduled to occur in BC. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 42 Chapter Three Methodology Aims and Objectives Goals The goal o f the proposed study was to ascertain what the lived experiences and opinions about the transition process in Prince George are like for: 1) clients, 2) service providers, and 3) administrators. Presently, the transition process culminates when one reaches the age o f 19 years. The recommendation from the Joint Ministry Working Group (2002) was for the transition process to begin at age 17 years, however, details as to how this would be operationalized were not articulated in the report. Through this research, I explored the transition process that is in place, and described its effectiveness (or lack of) from the point o f view o f the three groups o f participants that were studied. Differences in the experiences and opinions o f these three groups were also explored. As well, differences between policy and practice were also considered. Finally, I sought suggestions for improving the transition process. The uncertainty surrounding the structure for delivery o f mental health services motivated me to explore the issue o f transitioning to AMH. For a very brief time during the summer of 2005, a provincial government decision saw the amalgamation o f CYMH services with AMH services, under the Ministry o f Health. However, this decision was later withdrawn and the original Post-Gove division o f mental health services resumed (Henlon, 2005a, 2005b, 2005c). Given this uncertainty, I felt it was necessary to explore what the experience o f transitioning from CYMH to AMH has been like for the three Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 43 groups o f participants. Each group o f participants were asked similar questions to help achieve this goal. Research Questions The binding thread o f this research was to determine what the similarities and differences were in the lived experiences o f the three groups of participants involved in the transition process. This required that I first determine the experiences o f the transition for each group and then compare these experiences across the groups. While administrators and service providers do not transition from CYMH to AMH they are participants in the process and therefore, investigating their experiences or observations o f the transition process is essential. In order to determine and compare these experiences, each o f the three groups were asked similar questions during the data collection; for example: 1. What has been your experience or observations o f the transition process from CYMH to AMH? 2. What are the advantages and disadvantages o f the transition process from CYMH to AMH? 3. What changes would you make to the transition process from CYMH to AMH? This style o f open-ended questions invited the participants to share their own experiences and opinions o f the transition process. Theoretical Approach In qualitative research, the “researcher is an instrument o f data collection who gathers words or pictures, analyzes them inductively, focuses on the meaning o f Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 44 participants, and describes a process that is expressive and persuasive in language” (Creswell, 1998, p. 14). Within the context o f this research project, a qualitative approach to the research was appropriate as it was essential to grasp the meaning o f the transition from one ministry to another for the clients but also to gain the opinions o f this process from front-line workers (service providers) and management (administrators). “Qualitative research is an inquiry process o f understanding based on distinct methodological traditions o f inquiry that explore a social or human problem” (p. 15). This research adopted a descriptive phenomenological perspective. Phenomenology focuses “on a concept or phenomenon... and this form o f study seeks to understand the meaning o f experiences o f individuals about this phenomenon” (Creswell, 1998, p. 38). In this instance, the phenomenon for study is the experience o f transition from CYMH to AMH. Thus the aim o f the study was to describe “the meaning o f the lived experiences for several individuals about a concept or the phenomenon” (p. 51). Giorgi (1997) provided a step-by-step guide to incorporating descriptive phenomenology into qualitative research. First, verbal data is collected by adopting an open-ended style o f questioning. Second, prior to analysis, the researcher reads all o f the data to gain a general sense o f the data. Third, the researcher pulls out meanings from the data, which Giorgi terms “meaning units.” These meaning units have not been revised in any way; they are still the participants’ own descriptions. Giorgi emphasised that during this step, researchers should be aware o f the discipline within which they are working, but remain open-minded enough “to let unexpected meanings emerge” (p. 245). He further emphasised that researchers should be sensitive to their discipline (Giorgi, 2000a, 2000b). Fourth, the meaning units are themed and re-described in a manner appropriate Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 45 to the researcher’s discipline. Fifth, and finally, the revised meaning units are also reviewed to determine which are relevant to the phenomenon being studied (in this case, the transition process). Giorgi (1997) advises that more than one meaning unit can arise from the research. Spiegelberg (1994) also indicates that researchers should be sensitive to their discipline when selecting the various properties/meaning units o f the phenomenon. An integral component to obtaining the meaning units from the verbal data is the concept o f bracketing (Kleiman, 2004; Wall, Glenn, Mitchinson, & Poole, 2004). The term bracketing has also been referred to as reduction (Giorgi 1997; Spiegelberg, 1994). When conducting phenomenological research, the researcher aims to capture the meaning/essence o f the phenomenon (i.e., the transition experience) as the participants view it. When the researcher asks for ‘“ subjective experiences’, they are asking for descriptions o f situations in the world as experienced by human subjects'’'’ (Giorgi, 2000b, p. 13, italics in original). Phenomenology acknowledges that the researcher’s own beliefs and experiences accompany them in the research process. Bracketing aims to hold th e se . beliefs dormant so that the participants’ lived experience o f the phenomenon can be presented to the researcher without the researcher’s preconceptions confounding that experience. Hence, bracketing “can be used to highlight and put on hold our everyday assumptions” (Wall et al., p. 21). Similarly, Rubin and Babbie (2005) refer to the term reflexivity and describe it as an acknowledgement that the characteristics o f the researcher impact on his or her perceptions and interpretations o f the research topic. Maintaining this awareness during data collection is essential. Wall et al. discuss examples o f bracketing before (pre-action), during (in-action), and after (on-action) data Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 46 collection. Prior to commencing the data collection (pre-action), it is important to acknowledge one’s own experiences o f the issues and place them to one side. During data collection (in-action), there may be instances when it is necessary to bracket, as there is always the possibility that unplanned/unforeseen issues arise during this process. If the researcher has not considered an issue that an interviewee raises, it is necessary for them to withhold their own initial perspective o f the issue until the data collection has concluded. The researcher should still seek clarification of this new/unexpected issue. Finally, one may also need to bracket after data collection (on-action). It is important to prepare “to examine each interview with equal rigor, and read all transcripts thoroughly to recapture the process o f interviewing” (p. 27). By bracketing on-action, the phenomenological researcher reflects on the interview process to draw the in-depth meaning units from the data. For the purposes of my research, it was essential that I acknowledged my own beliefs and experiences in regards to the transition process from CYMH to AMH. I have not had a personal experience o f the transition process as a client. I anticipated that this would make it easier for me to be open-minded to the lived experiences o f the three groups o f participants. Furthermore, because I have not worked in the field o f mental health, I believed I would be approaching the research as an ‘outsider’ to the workings of the system. From this position, I believe I sought clarity from participants during data collection, which may not have occurred had I been an ‘insider’ in the area o f mental health. Often when one is personally or professionally involved in the research topic he or she may attach their own assumptions to the descriptions being provided by the participants. Alternatively, the ‘insider’ researcher may find it difficult to focus during Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 47 the data collection because the information the participants are sharing may be very similar to their own life experience (Kanuha, 2000). The assumptions or the difficulty in concentrating during data collection can result in misinterpretations o f the data. An ‘outsider’ is more likely to remain objective and seek clarity in the descriptions provided by participants (Headland, Pike, & Harris, 1990). However, I do have a connection to the service providers at Intersect, as my husband is contracted through MCFD to provide psychiatry services there. Therefore, prior to commencing this study I was already aware o f some o f the opinions o f some of the service providers at Intersect on the transition process. This information was piecemeal and did not qualify me as an ‘insider’ researcher. I do not believe that this affiliation has had any negative impact on my research. Phenomenological Approach to Interviewing and Focus Groups When conducting phenomenological interviews, the interviewer aims to “understand shared meanings by drawing from the respondent a vivid picture o f the lived experience complete with the richness o f detail and context that shape the experience” (Sorrell & Redmond, 1995, p. 1120). According to the phenomenological perspective, the interviewer does not conduct an interview, but instead is a participant in the interview with the interviewee. Incorporating open-ended questions allows for a conversation style in the interview in which both the interviewer and the interviewee are participants; this invites the participants to share their narrative. As Reinharz (1992) states, “interviewing offers researchers access to people’s ideas, thoughts, and memories in their own words rather than in the words of the researcher” (p. 19). Likewise, in focus groups, participants have an opportunity to share their experiences o f the phenomenon, and share in the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 48 experiences o f others. The challenge within the focus group is balancing the discussion: allowing all the participants time to talk freely and share their narrative, while still redirecting to the topic at hand. Regardless o f the purpose o f the research, this is often a challenge. As with interviews, focus groups can focus on individual experiences o f a phenomenon. Phenomenology aims, “in Husserlian terms, to get ‘back to the things themselves’ and to reveal the object or phenomenon to which meaning is being attached” (Wimpenny & Gass, 2000, p. 1486). This can occur in both interviews and focus groups. Often the focus group can assume an unstructured approach if the participants are more personally, emotionally, or professionally involved in the topic and, therefore, can maintain the discussion with little questioning from the moderator (Morgan, 2002). I anticipated that this would be the case when I conducted the focus groups with the service providers from CYMH and AMH, as this is an issue o f professional interest to them and may be a personal or emotional issue for some. The researcher often fulfils the role o f moderator in the focus group. Despite promoting an unstructured approach to focus groups, Morgan warns that “focus groups will fail without the active direction o f a highly skilled moderator” (p. 148). It is important that the moderator has the appropriate skills to keep the discussion focused on the topic. I had not conducted a focus group before, and therefore, was concerned that I would lack the expertise that Morgan advocates. However, one step I took to help in the facilitation o f the focus group was to provide the participants (the service providers) with a copy o f the questions to be discussed during the upcoming session. I believed providing the participants with this information ahead o f time helped to ensure the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 49 discussion remained focused on the research issue. Furthermore, I expected that the participants o f the focus group would only be able to offer me a limited time for the focus group, as it would occur during their working hours. With this in mind, I expected that . the providers would remain focused on the questions for discussion, to ensure that all were covered within the time-frame. A further step I took was to consider the use o f my voice throughout the focus group. When introducing the topic for discussion, it is important that the moderator assures everyone that they are all ‘experts’ with something to contribute (Krueger, 1994). Such language helps to assure participants that they are free to speak openly about the topic. I believed that validating participants’ contributions to the discussion and ensuring everyone had an opportunity to share their experiences would prove effective in maintaining a focused discussion. Adopting a phenomenological approach to the interviews and focus groups is appropriate to this study in order that the participants’ experiences and opinions o f the transition process can be heard. By incorporating this approach in the interviews and focus groups, the interviewer/moderator strives to make the participants feel comfortable in order that they may speak freely. This approach gives ‘voice’ to the participants o f the research. Inviting them to share their experiences will hopefully be an empowering, validating experience for them. Service providers employed in mental health have often reported that both they and clients do not feel heard by professionals at the administration/managerial level (K. Dixon, personal communication, January 25, 2006; D. Turner, personal communication, March 27,2006). Thus, focusing on the lived experiences o f these three groups in this research project will provide them with an opportunity to make their voices heard. As Atkinson (2002) writes, “If we want to know Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 50 the unique perspective o f an individual, there is no better way to get this than in the person’s own voice” (p. 124). Thus, adopting a phenomenological approach to interviews and focus groups is appropriate for this research project. Effective listening skills on the part o f the researcher are integral to the phenomenological approach to interviews and focus groups. In order to comprehend the experience o f transitioning, the interviewer needs to elicit the practical knowledge o f the interviewee by inviting them to share their own story (Daniluk & Hurtig-Mitchell, 2003). To describe the similarities and differences o f the transition process for the three groups o f participants, it is important to elicit the ‘lived experience’ of the phenomenon. The purpose o f a phenomenological interview is to discover the interviewee’s experience of a certain phenomenon. It is important to develop trust within the relationship. Obtaining trust is often made easier by the openness o f the researcher and inviting the interviewee to “describe his or her unique perspective o f an experience” (Sorrell & Redmond, 1995, p. 1120). This encourages the interviewee to share their story, and therefore, captures the lived experience. As Wimpenny and Gass (2000) state “A phenomenologist often commences an interview with ‘Please describe your experience o f... ’ with clarification sought to enrich the description and illuminate that experience” (p. 1489). Similarities and Differences Between Interviews and Focus Groups Key differences between interviews and focus groups are the number o f people, and the type o f interaction that occurs within each method. A one-to-one interview excludes the possibility o f interaction between participants. In a focus group, it is expected that during the dialogue, participants will share their thoughts, opinions, and Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 51 experiences in relation to the phenomenon being studied. The comments o f one participant often generate discussion from another. Krueger (1994) outlines this discussion as one of the strengths o f focus groups, as it is a “socially oriented research procedure” (p. 34). However, it is important to note that there is potential for conformity amongst the participants of the focus group (Asbury, 1995). A dominant participant or one who holds a certain position o f authority over the other participants, can have an impact on the discussion and the resulting data. As discussed above, the researcher’s voice can assist in this area by encouraging free participation and addressing each participant in the focus group as an ‘expert.’ Another option to combat conformity is to provide a post-group questionnaire following the conclusion of the focus group (Plaut, Landis, & Trevor, 1993; Sussman et al., as cited in Morgan, 2004). The questionnaire invites the participants to discuss how the focus group made them feel, and how honest they were during the discussion. This is also an avenue in which the participants can share any thoughts that they were not comfortable sharing with the group. A post-group questionnaire could also benefit participants who, for various reasons (e.g., shyness), did not contribute significantly during the discussion. A further difference between interviews and focus groups is that, in the latter, the researcher has an opportunity for participant observation. Not only does the researcher reap the benefits o f the “natural, real-life situation” (Krueger, 1994, p. 34) o f focus groups, but the interactions between participants o f the group can also be assessed via naturalistic observation. The existence o f non-verbal behaviours and interactions between the members of the focus group is an important dynamic observed by the moderator/ researcher and can supplement the verbal information provided. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 52 Wilkinson (1999) highlights one o f the benefits of focus groups in comparison to interviews (specific to feminist research) as a shift in power balance. She identifies this shift o f power as a strength for focus groups. In the context of an interview, the interviewer holds more control, and hence more power over the conversation (Nunkoosing, 2005). However, there are more participants in focus groups; therefore, the balance o f power transfers to them and the researcher may have less control over the discussion. Wilkinson highlights that the elimination o f the power differential “enables research participants to speak in their own voice” (p. 232). It should be noted that I am not conducting naturalistic observation or feminist research in this study. I make reference to these approaches as some o f the techniques fit with my own values and hence incorporating those specific techniques into this descriptive phenomenological study is appropriate. Castellblaunch and Abrahamson (2003) found that the dynamics o f focus groups can produce negative views on controversial topics. For instance, if people are angry about the research topic for discussion, they may vent their feelings in the focus group environment. That does not mean that the participant’s viewpoints are not a valuable component o f the focus group or the analysis. However, this was something I needed to be prepared for during the focus group. Through word o f mouth, I had heard that some service providers are not happy with the present transition process. While this was hearsay, there was the possibility that negative emotions could dominate the focus group. In an effort to combat this potential issue, I provided the focus group participants with a copy o f the questions for discussion. I also implemented some o f the suggestions from Krueger (1994, 1998) and Morgan (1993, 1998), including validating the feelings o f the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. participant(s), redirecting the conversation to other participants o f the focus group, and asking for any examples o f positive components o f the transition process. The beauty of focus groups is that the data produced provides the researcher with an idea on the consensus and diversity o f opinions on the topic o f research (Morgan, 2004). Justification fo r Selection For the purposes of this research, I believed that conducting interviews with service users who recently experienced the transition process would be more appropriate than a focus group, or indeed, some other methods o f inquiry (e.g., naturalistic observation and surveys). Focus groups would have given me the opportunity to gather information from a lot o f participants quickly; however, I believed this method would not be appropriate for this participant group. One o f my reasons for choosing individual interviews as opposed to focus groups was my concerns regarding confidentiality. Although the researcher can discuss the concept o f confidentiality at the start o f the focus group, it cannot be guaranteed for all the participants. This is o f particular concern within a smaller community, such as Prince George, where anonymity is more difficult to achieve. Another reason for choosing interviews instead o f focus groups for service users was that I believed, in the context o f the interview, they would feel more at ease sharing their lived experience o f the transition process. However, I acknowledge that it would be interesting to explore the different dynamics that might arise within a focus group setting for this participant group; this would be a consideration for future research. Morgan (2002) offered an example of the different dynamics that arise in interviews compared with focus groups in a group o f adolescent boys. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 54 I chose to use focus groups for gathering data from service providers as I believed it would prove to be very illuminating. I anticipated that there would likely be some diversity in the opinions o f the participants and, therefore, a focus group would provide an ideal environment for discussing the various perspectives on the transition process. Conducting a focus group would also allow me to gather information from more participants more quickly as opposed to arranging individual interviews. The difficulty with selecting a focus group was the fact that the participants knew each other, as they were employees o f one o f three agencies (Intersect, CRU, and EPI). While it is not essential that participants o f the focus group not know each other, it is suggested that this would be beneficial (Krueger, 1994, 1998 Morgan, 1998, 2002). However, for the purposes o f this research and in the context o f a northern environment, it was permissible that the participants o f the focus groups know each other. As Wilkinson (1999) writes, “feminist researchers have also drawn on people who already know each other” (p. 226) when selecting their sample for focus groups. Furthermore, when participants in the focus group know each other they may feel more comfortable discussing the topic, particularly if it is a topic of interest to them, and one that they have perhaps discussed before. I chose interviews as opposed to focus groups for gathering data from the administrators within CYMH and AMH because there were not as many people who hold such a position and hence a focus group is not appropriate. If there were more people in managerial/administrative positions a focus group would be an option to consider. However, as with the three focus groups that I conducted, I would not combine representatives from CYMH and AMH. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 55 Ethical Considerations Ethical approval was obtained for this research project from the University o f Northern British Columbia Ethics Review Committee. Furthermore, consideration was given to the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (Medical Research Council o f Canada, Natural Sciences and Engineering Research Council o f Canada & Social Sciences and Humanities Research Council o f Canada, 2003). Before commencing the study I spoke with the administrators from Intersect and AMH to explain the purpose o f this research and the format that it would take. Following their approval to conduct the research, I invited them to be participants in the study. Prior to conducting the interviews and focus groups, information sheets were distributed to potential participants. The information sheet reviewed the purpose o f the study. Contact details for my supervisor and m yself were also available, in case any potential participants required further information prior to agreeing to participate in the study. An informed consent form was also completed by participants prior to the commencement o f the interview or focus group. Confidentiality is an integral ethical consideration. Confidentiality was discussed with participants prior to the commencement o f the interviews/focus groups. Participants were assured that no identifying information would be attached to the transcripts, tapes, or notes from the interviews and focus groups. Furthermore, participants were informed that all the tapes, transcripts, and notes collected would be kept physically secure in a locked filing cabinet in the office o f the researcher’s home. I did not meet with the participants o f the focus Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 56 groups individually before starting the focus group, but I did assure each participant that they did not have to participate if they did not want to. Time was also provided for any questions prior to starting the discussion and I again assured the participants that they could elect not to participate once all the questions were answered. There are unique challenges to maintaining confidentiality throughout the research process in a northern community such as Prince George. For instance, there is only one agency contracted for CYMH services (Intersect); therefore, the agency is readily identifiable. Conducting a focus group within Intersect helped maintain confidentiality as service providers could feel free to discuss their opinions knowing that the final report would not personally identify them. However, I interviewed the only administrator from each ministry (one from Intersect and one from AMH). Although no specific identifiable information is presented in this final report, confidentiality could not be guaranteed for these participants to the same extent as for members o f the focus groups. Before beginning the interview, I emphasised that I could not guarantee the anonymity o f the administrators in my final report and both were still willing to participate in the interview. A further factor that I had to consider is that my husband is a local family physician who also works at Intersect. Before beginning the focus group with some o f his colleagues I wanted to assure them o f my confidentiality. I emphasised that anything they said would remain confidential and I would not relay to my husband what individuals had said during our discussion. Furthermore, I assured them that I would not . be listening to the tapes o f the focus group in a place where he would hear the conversation. Reproduced with permission o f the copyright owner. Further reproduction prohibited without permission. 57 When considering my ethical conduct in this proposed research, I referred to the work o f Denzin (2003). He criticised the biomedical definition o f research and encouraged researchers to reconsider their ethical practice, particularly in reference to minority cultures. Other examples o f ethical guidelines were provided by Denzin for comparison with the western biomedical model (e.g., Kaupapa Maori). Denzin provided some specific criticisms o f the biomedical model and offered suggestions as to how the ethical conduct of research should be performed. For example, the principle o f respect requires more consideration than the provision o f an informed consent form. Instead, “respect involves caring for another, honouring that person and treating him or her with dignity” (p. 253). Similarly, Davies and Dodd (2002) argue that ethics are about more than the completion o f an approval form. “Ethics are integral to the way we think about rigor and are intertwined in our approach to research, in the way we ask questions, how we respond to answers, and the way we reflect on the material” (p. 281). Research Methods/Design Participants There were three groups o f participants in this research study: ■ Clients who have recently transitioned from CYMH to AMH ■ Service Providers from CYMH and AMH ■ Administrators from CYMH and AMH In selecting participants for this research, nonprobability purposive sampling was adopted for the administrators and service providers. This sampling method was necessary as it was essential that these two groups o f participants have knowledge and experience o f mental health services in Prince George (Rubin & Babbie, 2005). My Reproduced with permission o f the copyright owner. Further reproduction prohibited without permission. 58 original intention was to conduct two focus groups; one with service providers from Intersect (CYMH) and the second with CRU (AMH). However, following my interviews with the two administrators from CYMH and AMH, it transpired that it was appropriate to include a third focus group with the Early Psychosis Intervention (EPI) team. In Prince George, the EPI team is involved with children, youth, and adults who are living with psychosis. As this team is involved with both CYMH and AMH, I believed it was necessary to conduct a third focus group with these service providers. This provided a more complete picture o f the structure o f mental health services in Prince George and gave all the appropriate service providers an opportunity to voice their opinions and experiences of the transition process. In selecting service users who had recently transitioned between the two mental health services, availability/convenience sampling was an appropriate method to adopt as it would otherwise be difficult to locate clients in the community. I perceived that asking service providers from CRU for possible clients who they thought would be interested in being interviewed would combat this difficulty. I also asked service providers from EPI if they could seek out clients for an interview. It is, however, important that “the researcher exercise caution in generalizing from the resulting data and should alert readers to the risks associated with this method” (Rubin & Babbie, p. 245). In this exploratory study, it is possible that the service users who agreed to be interviewed would only have positive things to say about their experience of the transition process, or conversely, they would have only negative comments to make. Having this awareness prior to commencing the study was important. I structured my questioning appropriately in an attempt to grasp a holistic perspective o f the experience. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 59 Only service users who were residents o f Prince George were eligible for selection in this study. Including service users from outwith1 Prince George would have introduced an added dynamic to the research. The experiences o f these service users would likely differ from those who are from Prince George (e.g., travel to access services and level o f family support may be limited due to the distance and other family commitments). To ensure a more homogeneous sample, I limited the service user selection to Prince George residents. Future research could consider the differences in opinions o f clients from within and outwith Prince George. Having three groups o f participants in this research project and using two forms o f data collection means I have achieved triangulation or multiple methods (Silverman, 2005). Triangulation improves the validity o f research as “it can involve the use o f multiple data sources, multiple investigators, multiple theoretical perspectives, multiple methods or all o f these” (Schwandt, 2001, p. 257). As Mason (2002) states “I think the concept o f triangulation - conceived as multiple methods - encourages the researcher to approach their research questions from different angles, and to explore their intellectual puzzles in a rounded and multi-faceted way” (p. 190). Data Collection The data collection took place between the months of June and October, 2006. I was aware that the summer season may have made it more difficult to determine a convenient time for all potential participants to meet for the focus groups. However, with 1 “O utw ith” is a term not recognized in North A m erica. H ow ever, the term is recogn ized in Scotland, and 1, being Scottish, have used this term con sisten tly throughout m y academ ic career. 1, therefore, ch o se to continue u sin g this term, as I b elieve it accurately reflects the concept that I am articulating better than the term “w ithout.” A definition can be found in the C om pact O xford English D ictionary on lin e at h ttp://w w w .ask oxford .com /resu lts/7 v iew "dict& freesearch=outwith& branch I38 4 2 5 7 0 & tex tsea rch tv p e j■•■ex act Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 60 appropriate planning, I was able to arrange a convenient time for the focus groups. The three focus groups were planned with the team leaders of the service at a time when most o f the service providers were available. Interviews with clients and administrators, and the focus groups with service providers ran simultaneously throughout the two-month time period, as opposed to collecting data from one group of participants prior to progressing on to the others. Collecting the data simultaneously was more feasible, considering the season in which it occurred. However, as it transpired, the interviews with administrators and the three focus groups were completed prior to any service user interviews. All o f the interviews and focus groups were tape-recorded and hand-written notes were also taken. In the case o f focus groups, flipcharts were used for taking notes. The tapes from the focus groups were not transcribed as 1 believe this is difficult to accomplish, as there was more than one person participating and it would be difficult for a transcriber to decipher who was saying what. After each question I clarified with the focus group participants, if what I had written adequately reflected what they had said, and I asked if there was anything they wished to add, delete, or amend. I still wanted the focus group taped, so I could listen to the actual discussion, and to pick out any appropriate quotations. Interviews with service users. The interviews with service users were unstructured. Bernard (2000) writes, “When you want to know about the lived experience o f fellow human beings...you just can’t beat unstructured interviewing” (p. 193, italics in original). I believed this style o f interviewing was an effective approach, as it made it easier to develop rapport with the service users. The questions that I had constructed for the focus groups and administrators were used as possible probe questions Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. throughout the unstructured interview (see Appendix B). As discussed above, at the start of the interview the issue o f informed consent and confidentiality was discussed and the interview did not proceed until the participant had agreed and signed the consent form (see Appendix C). Bernard (2000) recommends beginning the interview by telling participants that you want to learn from their experiences. In order for the participants to share their experiences, they need time with limited interruptions to share the information they feel . is important. Therefore, the interview would commence with a general, open-ended question to open the topic for discussion. The flexible nature of this style o f interview “allows you to respond to things you see or hear that you could not anticipate” (Rubin & Babbie, 2005 p. 448). One important skill to have for the unstructured interview is the art o f probing (Bernard; Rubin & Babbie). Although in descriptive phenomenology the researcher brackets his/her own feelings and opinions while conducting the interview, ‘in-action’ as discussed above (Wall et al., 2004), this does not take away from the importance and need to probe for further information or clarification during the interview. As an ‘outsider’ (Headland, et al., 1990) to the structure o f mental health services in Prince George, I believe I probed for further clarification of the information provided by the service users. If I was an ‘insider’ researcher I may not have sought a more detailed explanation o f the information the service users were providing. Interviews with administrators. In contrast to the unstructured interview I used with service users, I would argue that a semi-structured approach to interviewing administrators would be more effective. “Semi-structured interviewing works very well in projects where you are dealing with managers, bureaucrats, and elite members o f a Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. community - people who are accustomed to efficient use of their time” (Bernard, 2000). In the context o f a semi-structured interview, I followed an interview guide (see Appendix B) which contained an outline o f the questions I wanted to discuss during the interview, but I had the flexibility to adapt the order and wording o f the questions as appropriate (Rubin & Babbie, 2005). I also believed that this form o f interviewing was more applicable for this group o f participants as they may have been less willing to share their opinions unless prompted by specific questions. As with the unstructured interviews, informed consent and confidentiality were discussed in detail prior to commencing the interview. I talked with the administrators specifically about the fact that I could not guarantee their anonymity in this research. Only two administrators were interviewed and given the minimal numbers o f people who hold administrator positions within Prince George, it is possible that they could be identified. I explained to both administrators that where possible I would not specify which administrator said what when reporting the results. Both administrators were agreeable with this arrangement. Focus groups. Krueger (1994, 1998) and Morgan (1993, 1998) provide practical steps to planning a focus group. One important factor is ensuring that the focus group is an appropriate size so that everyone feels comfortable sharing. The number o f service providers from Intersect, CRU, and EPI who participated in each focus group was partly determined by their availability at the time o f the focus group. From consultation with the three services, an appropriate time for the focus group was determined. The service providers who participated in the focus group came from a variety o f disciplinary backgrounds, including: social work, nursing, counselling (Education Counselling and Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 63 Psychological Counselling), and sociology. There were three participants in the CRU and EPI focus groups and seven in the Intersect focus group. Participants in the focus group were provided with the information sheet and the list o f questions for discussion prior to the focus group taking place. This gave them an opportunity to consider their responses to the questions ahead o f time and I believe helped them to stay focused on the subject for discussion. All participants were encouraged to share their experiences and opinions o f the transition process. Following the advice o f Krueger (1994, 1998) and Morgan (1993, 1998) I prepared myself to address various dynamics that may develop during the focus group. If some o f the participants appeared shy and were contributing little to the discussion, I would use appropriate probing skills to involve them in the discussion. Likewise, if there were dominant talkers in the group, I would redirect their thoughts to the rest o f the group and invite further contributions from the other participants on these topics (Krueger, 1994, 1998). As suggested by Plaut et al. (1993) and Sussman et al. (as cited in Morgan, 2004), I included a post-group questionnaire to provide participants with an opportunity to share any other information that they were perhaps not comfortable sharing in the discussion. The participants were not required to complete this, but were given the opportunity to take it with them to complete later if they felt they had something more to contribute. I followed up on this one week after the focus group. None o f the participants completed the post-group questionnaire. I did not ask each participant if they had completed the questionnaire, but instead spoke to the secretary o f the agency, or one participant from the group to find out if any had been completed. Reproduced with permission o f the copyright owner. Further reproduction prohibited without permission. 64 Procedures Before commencing the research, I spoke with the administrators from Intersect and AMH to: explain the purposes o f the study, invite their participation, and seek their approval to recruit participants. Interviews were conducted with three service users who recently (within the last eighteen months) transitioned from CYMH to AMH. This “time since transition” was selected as I wanted to hear from service users whose transition experience was completed, but still fresh in their mind. I connected with service providers from CRU, and EPI/Youth Assertive Outreach (YAO)2 to appeal for clients to participate in the research. The secretary for the psychiatrists at Intersect also explored client files for appropriate clients, after consultation with the head psychiatrist, and contacted those clients to see if they would be interested in an interview. I asked the service providers and the Intersect secretary to give an overview o f the study and ask the clients if they are interested in talking to me about the transition process. The service providers could be selective in who they approached, based on their knowledge and experience o f the client’s vulnerability and the Intersect secretary sought clarification with the psychiatrists for appropriate clients. If clients tentatively agreed to an interview, they were provided with three options to arrange the interview. These options maintained the client’s privacy and ensured that their rights were not violated. The options were: o client agreed to service provider passing their contact details to me and I would call the client to arrange the interview. The client may need to sign a 2 2 1 learned during the EPI focu s group that they are also called Y outh A ssertive Outreach. S om e m em bers o f the team w ork on ly w ith clients w h o have a p sy ch o sis, others w ork with clients w h o m ay have a p sy ch o sis but are also livin g w ith addictions issu es. It w as on ly during this focu s group that the term Y A O w a s used so I w ill use that term w hen appropriate. In referring to the other interview s and fo cu s groups just the term EPI is used. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 65 release form (from Northern Health Authority or Intersect) allowing the service provider/secretary to provide me with their contact details; o the client could be provided with my email address and the client could email me to arrange the interview; o the service provider could arrange the interview for the client with me. Unfortunately, service providers from CRU were unable to secure clients for an interview. Six potential clients had been contacted, two o f whom refused, and the remaining four did not return the phone calls after the service provider left three messages. One client interview was secured through EPI. One of the service providers discussed the research project with this client and reviewed the information sheet. The client agreed to an interview which was organised by the service provider to take place on site at the EPI office. The service provider was available to introduce me to the client and we reviewed the information sheet and consent form together prior to commencing the interview. The remaining two interviews were organised via the Intersect secretary. When planning the interviews it was important to consider various logistics such as location, so that the interviewee feels safe when participating in the interview (Reinharz, 1992). I expected the interviews to last approximately one hour. Participants were informed that the interview would be tape-recorded and later transcribed. They were also informed that the transcriber would sign a confidentiality agreement prior to receiving the tapes for transcription. One administrator from CYMH and AMH was interviewed. There is only one administrator at Intersect, hence for equal comparison, one administrator from AMH was Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 66 interviewed. As with the interviews with clients, informed consent protocols were adhered to. As discussed above, the issue o f anonymity was discussed at this point. Both administrator interviews took place in the office o f the administrator. This was convenient for the administrator and there were no interruptions while the interview was taking place. As with the interviews, the focus groups were arranged at a time convenient for the service providers. The focus groups took place on-site at Intersect, CRU, and EPI. No set number o f participants was pre-determined for the focus groups, as it was dependent on the number o f available service providers at the time and also on the number who agreed to participate. Separate focus groups were planned, as I believe that keeping representatives from the three services separate would be more effective. If one combined focus group was planned, I would be concerned that the representatives o f the three services may be more ‘on guard’ and less willing to share information. Interview participants were offered a copy o f the transcript for review or editing prior to analysis if they wished. Some researchers, particularly feminist researchers (e.g., Reinharz, 1992; Webb, 1993), advocate for this step in the research. Upon receiving the transcript, participants were requested to make any revisions within one week. This stipulation ensured that the data collection component o f my research did not take longer than necessary. Both administrators did want to see a copy of the transcript. I did not sit and review this with them. I offered to review the transcript with clients if they wished, to ensure that they fully understood the content and to discuss any revisions they wanted to make. Two o f three clients chose to review the transcript. O f those, one made a few additions to the information already given, the other made no amendments. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 67 Data Analysis The phenomenological approach requires that the data analysis incorporate the development o f themes from the meaning units collected from the transcripts. The thematic analysis was performed on the interviews and focus groups following transcription o f the interviews. As Giorgi (1997) and Spiegelberg (1994) describe, the development o f themes requires that the researcher remain sensitive to the discipline in which they are conducting the research. From a slow reading and rereading o f the transcripts I searched for the ‘meaning units’ and from that constructed themes from the data. Patton (2002) referred to thematic analysis as an identification o f categories, themes and patterns. As Creswell (1998) wrote, one will “search for all possible meanings” (p. 52). Each interview and focus group was reviewed separately in the analysis to develop the meaning units and then these were reviewed collectively to identify the various themes. Krueger (1994) discussed the different forms o f analysis that can be conducted: transcript-based analysis, tape-based analysis, note-based analysis, and memory-based analysis. Transcript-based analysis is the most time consuming but is also the most in-depth and thus produces the richest information for finding themes. Transcript-based analysis o f the interviews was used in this research project. Computer-assisted qualitative data analysis packages, such as NVivo were not used in this research project. I have not been trained in operating such software packages and therefore, in the interest o f time I conducted the analysis without such software. Furthermore, Patton (2002) notes that such software packages cannot replace the value of human analysis. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 68 Chapter Four Results In order to determine the similarities and differences in the lived experiences of the three groups o f participants involved in the transition process, it was necessary to ascertain the observations and experiences o f the transition for each individual group and then compare these experiences across the groups. This chapter will report the experiences and observations o f the three groups o f participants and the next chapter will discuss the similarities and differences between the groups. After reviewing the data in accordance with the recommendations from Giorgi (1997) discussed in the previous chapter, I read and reread the information in search of meaning units (the third step). Following that, six themes were developed: Communication, Age o f Transfer, Service Provision, Turf Issues, Client Need, and Workload. Within each theme, I outline the perspective from the three groups o f participants. Some groups o f participants did not refer to some o f the themes, for example, service users did not refer to the ‘turf issues’ theme. When reporting the results, service users are referred to as ‘client 1’, ‘client 2’, and ‘client 3.’ This is consistent throughout each theme and ensures that the anonymity o f the clients is maintained. Communication There are two aspects to the communication theme: communication between the different service providers; and communication between the service providers and the service users. Other than client 1, the service users referred to the latter aspect of communication, while the administrators and service providers focused on the former. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 69 From the interviews with the administrators and the three focus groups it is evident that communication between CYMH and AMH is lacking. The level of communication varies between the three service provider groups. The administrators of both CYMH and AMH acknowledge that communication between the two Ministries is an issue and I will begin by exploring some o f the comments they made. Administrators Both administrators highlighted some aspects o f communication that impact on the transition process for clients. The administrators used the term “linkage” to describe communication. None o f the comments from the administrators directed blame at either CYMH or AMH regarding the issue o f communication, but instead highlighted their observations o f the situation as it stands. As one administrator said: I think the difficulties with the transition from the Child and Youth Mental Health to the Adult Mental Health System may be about the lack o f those linkages and those kinds of partnerships at that end point, and some o f it might be purely a perception problem on the part o f both systems and a lack o f knowing how they could work together more closely or in a more meaningful way. The Adult Mental Health System has not been, for their part, well educated on the youth system and what that looks like. They are not well educated on MCFD and how to work with MCFD. Entwined with the aspect o f communication is the matter o f education for both Ministries. One administrator believes that educating service providers on the workings/mandates o f both ministry systems will help facilitate the communication between both parties. However, at present the linkage is not there as the same administrator articulates below: In terms o f who initiates [the transition] I would see that as the responsibility o f Child and Youth Mental Health to raise the awareness, and to raise that awareness at the 16-17 year point, so that we truly are linking in, but there again that’s about building that system so that there are identified linkages and that those people are identified and that each system is aware o f who those people are and this is what’s Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 70 lacking in that CRU - CYMH interface, is that there is no ongoing relationship; there’s no linkage being built there... it’s a somewhat disengaged relationship. So the process is there is no ongoing linkage there other than a referral comes in. Both administrators elaborated on what “good communication” would look like between the service providers: I would strongly recommend, and push for all the time with clinicians in the building, that there be an Integrated Case Management (ICM) meeting at the time o f transition. So those that have an investment in this young person’s life are all at the table, they all understand what their roles and responsibilities are, what that transition is going to look like, what is it this child will need from the system as they transition over. And that you are there to interpret that child’s story because you know them the best probably. But there’s not a joint process there. I think it’s entrenched in the ICM process, and why we need to be really building that around those transitional points across our systems, no matter what age group we are talking about, I think that’s the key. The AMH administrator was able to provide a regional perspective on the communication between CYMH and AMH in comparison with Prince George: What I hear in the region from the Child and Youth Mental Health system is that they, I think, are more actively working at building their systems than Intersect is here in Prince George and Adult Mental Health. So there seems to be awareness in the region, particularly in the North West, but I would say that in the North East as well, that developing those linkages is crucial. As those systems have come together and developed joint planning systems around other issues there’s just been this natural flow through to developing those linkages for that end piece, transitional piece... It’s funny because we have more services and greater capacity to build those relationships here [Prince George] but there’s a lack o f will and it’s historical. There were some mixed observations surrounding the communication between Intersect and EPI. One administrator believes that while there is a relationship between the two services, the role of each provider is unclear: I think I had a different perspective on what they would be doing so there needs to be a little more clarity around those roles... we are collaborating with some o f the team; we have done some great work on some cases with some children we have in our building where they have done some o f the work and we have done some o f the w ork.. .but I guess it’s who’s doing the therapy? Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 71 The other administrator described what she believes the relationship between Intersect and EPI is starting to look like: The real opportunity then is that a youth can transition very smoothly from one service to another because the clinicians that are involved have done the work to build a relationship so that people aren’t just disengaged at one end one moment and expected to engage the next so that there’s some kind o f relationship building and that you know in a perfect world there’s that opportunity to have the youth meet with both people and then gently transition on where gradually one steps back and one steps in. She was then more specific about what the relationship is like presently by saying that: Intersect’s pulled back from that a little bit and is not as active as it was and w e’re working that out and still kind o f in the process o f trying to formalize some o f that, but for the most part that works really well, it’s very successful. From the perspective o f both administrators, communication is a key aspect o f the transition process and is something that is in need o f improvement, particularly between CRU and Intersect. The communication between EPI and Intersect seems to be better, which is encouraging to both administrators, as it offers a foundation for them to build on. Service Providers The service providers offer similar information to the administrators regarding the issue of communication. There is also little difference between the different service providers regarding communication. All three groups o f service providers agreed that lack o f communication between them was an issue when it comes to transitioning clients from CYMH to AMH. Service providers from CRU and Intersect highlight that consent is a factor that hinders the communication between the two services; to communicate information between CYMH and AMH it is necessary to get the consent o f the client. As one Intersect service provider said, “follow-up with the client once they have moved to Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 72 AMH is difficult because o f consent issues.” Some other Intersect service providers articulate that because o f the lack o f communication, they have no idea where clients go once the transition to AMH is complete. “I don’t know who is in AMH and there is no communication. I have no idea if the client ever actually goes to AMH. If I knew someone from AMH it might help.” Likewise one o f the CRU service providers report: There is no information from Intersect when a client is referred over so we don’t know what has happened before. We are not privy to any information from Intersect at all. That’s a huge hole because we want continuity o f care. You don’t want to repeat what hasn’t worked - you want to stay client-centred: a big hole is staying client centred. One service provider from Intersect provided the following analogy to highlight what communication is like between the two Ministries when it comes to transitioning clients: The analogy I would use is planning to drop a kid off at their first week o f university. They had interviews, they did paperwork, they’ve met people, you’ve seen their dorm, had a tour, bought their textbooks. So there’s been all these pieces, but if the first start up at college was how this is done with AMH, I’d be driving by and I wouldn’t stop my car, open the door, and then “Good Luck.” There are no joint ICMs or conferences between AMH and CYMH. As one CRU service provider put it, “There is no sitting down and discussing the clients between adult and youth.” One o f the Intersect service providers said that they have ICMs that involve other services, for example, schools, family members, and coaches, but “AMH is never at the table, nor are we, if they are having ICMs, on a twenty year-old, we are not invited either.” However, when EPI transition clients to COAST, service providers from both services meet and the EPI service provider Give[s] an overview of the client, what w e’ve been working on, what services they’re hooked up with, then they identify who is going to do the case management [from COAST] and me and that person identify how w e’re going to transition the person... whatever is the best fit for the individual. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 73 In contrast to the relationship between Intersect and CRU, the relationship between Intersect and EPI/YAO is better. Intersect service providers report that they have more confidence in transitioning clients to EPI than to CRU, because they are confident that the EPI team will follow-up; “We have a connection with EPI so it’s easier to transition.” The service providers from EPI/YAO agree that the communication between Intersect and them is good, but claim it could be better. They articulated that it could take a week o f phone-tag before getting to talk to each other. Intersect and EPI/YAO share some clients, where, for example, a client has concurrent mental health and addictions issues. Intersect would see the client for their mental health issues and EPI/YAO would see the client for the addictions piece. Service providers from EPI/YAO report that this relationship with Intersect is good as there is joint planning between the two and it means that both the mental health and the addictions issues are being addressed at the same time. However, the EPI/YAO service providers also said that, “It comes down to who you know and depends on the therapist at the other end.” The issue o f “who you know” was discussed in the three focus groups. Knowing someone within the other system makes communication easier between the different services. As already mentioned, Intersect service providers know the service providers at EPI so they have more confidence in transferring there. One Intersect service provider said “I don’t know who is over there [CRU]” and another said “How do you transition someone when you don’t have confidence in the system that you are transitioning them to, or contact? That’s where it falls through the cracks.” Service providers from CRU recognise that there is a connection between Intersect and EPI, and that they are not involved; there is no connection between Intersect and CRU, they do not know each Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 74 other. Service providers from EPI/YAO highlight that while “who you know” is a good thing it can also be difficult to get services for clients if you do not know people in the appropriate services. As one EPI/YAO service provider put it, “You can’t get around relationships you have with other systems.” The service providers from the three focus groups also made reference to the different filing systems and how it can make communication difficult. Service providers from CRU said that both EPI and themselves have access to the same files, but Intersect does not. Service providers from CRU think that Intersect should be able to access those files, but they also realise that there are legislation and consent issues that prevent that. Intersect is using a paper filing system at present in comparison to AMH and a lot o f doctors’ offices: “The different database systems get in the way o f communication between [CYMH and AMH] systems.” A service provider from Intersect offered an example to highlight this: If I send an assessment to someone at AMH they may or may not already have a client file. If not they may make one or forget to make one, or just have this loose piece of paper but everything else regarding that client is already on SYNPASE [the computer database system]. Service providers from EPI/YAO referred to the computer system, ‘SYNAPSE’, as an important tool they use for communicating with different services. When they transfer clients from EPI to COAST, they use the SYNPASE system. The EPI/YAO service providers did mention that while the computer system looks good on paper, in reality the server breaks down and it is not that user friendly. However, they do agree that the computer system is better than the paper/fax system that is still in operation at Intersect. The service providers from all three focus groups had a variety o f comments regarding the communication between the different services, and from that they offered Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 75 some suggestions for improving the communication which will be discussed in the next chapter. Service Users The service user recruited through EPI/YAO (client 1) felt that communication between the two services was good. While attending school, this client had Individual Education Planning (IEP) meetings arranged, where various service providers came together, along with the client, to discuss appropriate plans o f action. When asked if the IEPs were a good thing the client responded: Yeah, they were okay because they just kept tabs on me. Some months I would be doing good, some months I would be doing bad and they would know about it that way. It’s not one person that knows about it, everyone kind o f sees it. Seeing a service provider from both Intersect and EPI/YAO was beneficial; however, the client would have preferred not to relay the same story multiple times to different service providers. As the client explained: It would just help if my counsellors were in the same place and they could talk to each other. I don’t know if they are allowed to do that but it would just help a lot. It would be easier than having to explain myself, then they could just remember the key points that were affecting me that week and I wouldn’t have to speak for an hour. While the IEPs were beneficial for client 1, it did not eliminate the need for the client to retell the same story over again to the various service providers. Clients 2 and 3 did not refer to the communication between the service providers at Intersect and AMH. However, both clients did talk about the communication between the service providers and themselves. Client 2 explained that the counsellor at Intersect communicated the procedure for transitioning to AMH well: [The counsellor explained that] once I turned 19 I couldn’t be there anymore just because I am an adult and they had kids that they worked with and I had no Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 76 problem with that and other than that all I was worried about is like they are going to be like ‘you’re 19 bye’ (laugh) and I had no idea where the Adult Mental Health building was or anything like that but they all showed me, they introduced me to people there, it was really nice. Likewise, client 3 also felt that communication with the counsellor and psychiatrist at Intersect was good. Both those service providers helped prepare client 3 for the transition, explaining where to go and what to expect. Client 3 explained “The psychiatrist told me that I was going to move over there and they would have it all set up and I wouldn’t have to worry about anything.” In contrast, communication between the AMH counsellor and client 3 has not been good. As client 3 said, “He doesn’t understand me. I change the topic and talk about something else but he still doesn’t understand me.” There has been no communication between the AMH counsellor and client 3 in about six months, “1 haven’t seen him for about 5 months or 6 months now because I just don’t really want to see him because I don’t like him.” None o f the clients know the name o f the program that they are attending at AMH; it either has not been communicated to them, or they do not remember. When I asked client 1 if (s)he knew the name o f the program (s)he is attending, (s)he replied “no.” Likewise client 2 said, “no (laugh) they told me but I have no idea what it would be.” Client 3 also did not know the name o f the program being accessed. Age o f Transfer When conducting the interviews with the administrators and the focus groups it became apparent that there is more than one point o f transition. Although this thesis is specifically exploring the transition from CYMH to AMH at nineteen, reference is made Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 77 to the other types o f transition that the participants discussed. I believe these to be relevant in building a complete picture o f the transition process for clients. Furthermore, some participants believed that some points o f transition are working well and need to be replicated in other areas. One o f the questions posed to both administrators and to the focus groups was regarding the age that clients transition over to AMH services. This question generated a great deal o f information surrounding the ‘how’ and ‘w hen’ o f the transition process. Administrators The Ministry o f Health is trying to work within a “framework o f every door is the right door” so if a client comes through APAU at the hospital, an initial assessment will be done and then the client will be transferred on to Intersect. One administrator believes that that transition works well but We don’t have that at the other end, so when we are transitioning those same youth from the youth system to the adult system in a perfect world I would like to see that intensive system set up at that end as well that’s really how the system needs to be built. This administrator believes that: We get it around the younger youth at that front end piece and how we transition youth back and forth. So the systems are there, the model is there for how we move youth through the system but we haven’t transposed that model to our work at that end... to that next point o f transition [youth to adult] those youth tend to be very very high risk, very very difficult, very high end intensive in terms o f need for acute supports so are better serviced through some adult services that have a bit more expertise in that because o f the adult side that they provide care for them and those youth generally tend to be already living independently. Both administrators talked about some o f the reasons why some clients transfer earlier than their 19th birthday, some later than their 19th birthday, and when the transition Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 78 process should begin. One administrator offered this reason for transitioning clients earlier than 19: I think we should be talking about them when they are 17 because we are not talking just mental health but I think we have done some successful transitions for youth who are 18. The hospital is starting to see them on the adult side; they may be in and out and they are going to probably require some supported living in an adult system. The other administrator had a very similar comment: They have connected through other w ays...they have access to the rehab pieces and the life skills pieces and the independent living pieces and those pieces are more intensive at the adult level so we can concentrate more on building their functionality and building their capacity because they are in for the long haul and we recognize that and it just makes better sense to transition them and get them attached and grounded right away. Although some clients may transition earlier than 19 year o f age, one administrator did explain that, “In my experience not a lot earlier.” She believes that, particularly for chronic clients, those in need of long-term or life-long services, the transition should be happening earlier. The administrators offered similar reasons for those clients who do not transition to AMH at 19 years o f age. They believe that if the client is not going to need continued mental health services then the client should stay with Intersect and complete the therapy. As one administrator said: Those younger kids that stay within the Child and Youth system may have a very strong relationship with their clinician and it may, it just doesn’t make good sense to just transition them to something else and that may be about, they may not need that longer, that intensive longer follow up. The other administrator said: If we have a youth who is 19 and we know that we can support that youth and complete the work that is required within a few months we would not transition them over. We would hang onto them and complete the work, knowing that they are not going to probably require anything further. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 79 The AMH administrator was not aware that MCFD were keeping clients beyond their 19th birthday, so when she heard that there were some instances where that was the case she had this to say: I am encouraged to hear that MCFD is, because I am not aware o f a lot o f cases where they carry the youth past 19. That’s always been written in stone that they wouldn’t do that and it’s been a huge sticking point for us in terms o f our negotiations across the systems and in terms o f our planning. So that’s fairly recent, if that’s occurring because up until now it’s always been very clear from their executive that that was not going to happen and it was 19 and then adult services needed to be ready to receive those kids so that’s new and I am encouraged by that. Although the administrators could explain some o f the reasons around the age of transition and how it should theoretically work, one administrator did provide an example o f when the transitioning o f clients from CYMH to AMH has not worked well: I do know of one where the family really was breaking down very quickly and we had already applied for his disability and as he approached 19 the family really just wanted him out of the home and this young man was not ready to be on his own. He was very ill number one. Number two he had not ever lived on his own, he didn’t have the skills to live on his own. We certainly needed and probably didn’t do...the system didn’t do a great job in preparing this young man to live on his own. So he was quickly moved out to an apartment and he didn’t know how to grocery shop, you know budgeting wasn’t something that he was familiar with at all so within a month he was having all kinds o f problems and unfortunately because he wasn’t coping, stress and anxiety increased and he was back in hospital within 6 weeks. The client in this example would have been admitted to the Adult psychiatric ward as the APAU only sees patients up until they are 18 which means that an 18-year-old client would be seen in the adult mental health side in the hospital, but still accessing Intersect in the community and as one administrator put it “there’s no system in place out o f the Adult Mental Health system to link in with those MCFD systems and so very often they end up again in that kind o f conflictual kind o f a situation.” If a client enters the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 80 emergency department, a service provider from CRU would assess the client and then send a referral to Intersect, resulting in multiple assessments and intakes for the client. There are various transitions at play within the mental health system which can cause confusion for not only the clients but for the service providers. However, the transition from CYMH to AMH is viewed “as the responsibility o f CYMH and to raise that awareness you know at the 16-17 year point.” However, as discussed in the previous section, lack of communication between both systems makes it difficult to initiate the transition. As will be discussed presently, the observations o f the service providers indicate the difficulties they face surrounding the age to transfer youth over to AMH. Service Providers When discussing the age of transition with service providers, a variety o f answers were received from the different services. Much o f the discrepancy surrounds the time to initiate the transition process. Service providers from CRU said: “Two months before a client turns 19 Intersect begins the process o f transition: this is not early enough.” Whereas service providers from Intersect said: “If we called AMH earlier than a few months before the clients 19th birthday, then they would tell us to call back closer to the time.” CRU service providers claims that they have an agreement with Intersect that they will take clients six months before they turn 19, yet Intersect service providers claim that they could not get a client transitioned to AMH at 18 years and 6 months. One service provider from Intersect did say, “Maybe it depends on who you talk to at AMH” and one o f the CRU service providers posed the question: “What would happen though if we start getting referrals from Intersect when they are 17 or 18 years old? Is not AMH going to Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 81 say, sorry you’re not an adult, they’re not our responsibility?” It is evident then, that there are different opinions about the age o f transition between the Ministries. In contrast, transition between Intersect and EPI seems to be clear. The EPI/YAO service providers are not bound by age and so can take clients before or after 19 years o f age. As such, clients have transitioned from Intersect earlier than 19 and later than 19 years o f age. When the transition is initiated from Intersect, the EPI/YAO service provider asks; “Eiow do you want to do this? Will I come down to your office? Will you come here?” The Joint Ministry Working Group, discussed in Chapter Two, recommended that the transition process begin when the client is 17. A regional protocol was developed between MCFD and the Northern Health Authority that stemmed from the provincial protocol. This was discussed in the three focus groups and was met with overall agreement from the service providers. One CRU service provider said: “It makes sense to start at 17 but it doesn’t happen.” One o f the Intersect service providers said: So we see a client up to 19 and talk about transition but it is frequently very difficult, if not impossible, to get anybody on board until they are 19 and to make them feel comfortable and have a relationship: it would be nice to have a transition time to build that rapport. That doesn’t happen because they (AMH) don’t see people until they are 19 and we don’t see people after they’re 19, in theory. One o f the EPI/YAO service providers said: “It makes sense to start at 17 but I don’t think the systems are set-up to support beginning transition at 17. You could not get a client into AMH at 17.” Another EPI service provider highlighted that “At 19 the client is out o f every system and needs reconnected with every aspect of service.” EPI/YAO finds it easier to work with clients as they are not bound by age like other services. However, the service providers did articulate some o f the issues surrounding transferring clients: “If Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 82 there is an 18 year old leading an adult lifestyle, then AMH services is more willing to plug people in especially if they need longer support, but at 17 they couldn’t get someone in to adult housing: NO WAY.” Although the Joint Ministry Working Group recommended that the transition process begin at 17, the service providers from the three groups agreed that this is not happening and some service providers from two o f the groups question if it is a feasible option. One service provider’s query surrounds the impact this would have on workload. Another service provider agreed with this comment, but also added that she does not believe it is fair to have these recommendations (from the Joint Ministry Working Group) in writing and no-one implementing them in practice. Another service provider explained that despite the best plans clients will still likely end up on waiting lists. An example regarding housing was offered to illustrate this: “They might not get in despite the best plans, if there are no beds, there are no beds.” There is, however, general agreement from the three groups o f service providers that if it is evident that a client is requiring ongoing mental health services (and perhaps other service, such as housing), then it makes sense to transition them to AMH sooner rather than later. Intersect service providers agree with the administrators that some clients remain in CYMH beyond their 19th birthday if it looks like the client will not be requiring further services. The service providers from Intersect also had comments in relation to the differences between acute and community care for youth: I had an interesting experience with an 18-year old who got too ill to stay where she was while the transition was happening and so she went to the hospital, but not to APAU, she went to adult. She felt like she belonged to APAU and had relationships with people there. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 83 Another service provider from Intersect explained that there is no agreement about the age definitions for youth and adult, that is for acute versus community services. She believes it would be helpful if they were all the same age, so either APAU would see patients up until they turn 19 or the transition o f services would happen at 18. Other reasons were offered from Intersect service providers for delaying the transition o f clients to AMH. If a client is enrolled in a particular group program with Intersect which extends beyond the client’s 19th birthday, the client would continue with the group until its completion. Also, if a client is destabilized and requiring psychiatry services, Intersect service providers will delay transitioning the clients until they have been seen by one o f the psychiatrists at Intersect. All service providers at Intersect agree that having psychiatrists on site is “a big help.” Another reason for extended services within CYMH is: Some clients could be gone for a while doing whatever they are doing and some will walk in the door at 21, thinking they can still access services here. Some o f it is as simple as that: trying to get them hooked up because they haven’t been in counselling for a while. Service providers from CRU explain that in order for clients to even get on waitlists for particular services they need to meet certain criteria. They explain that these arrangements should be made earlier, “but it doesn’t happen: no future planning.” As one service provider put it “They [the clients] don’t all o f a sudden get smart at 19 or get it together”, meaning that the assessment should be done in advance to ensure that clients have met the appropriate criteria for certain services. Yet, as the Intersect service providers explained: “If a client doesn’t get a diagnosis until 18 'A or doesn’t experience a psychosis until this time, it is hard to begin treatment and the transition process.” Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 84 There is general agreement from all the service providers that at present the transition process begins, on average, between 2-6 months before the client turns 19. There is also general agreement that this process should start earlier, but the barriers discussed above impede this. Service providers from both Intersect and EPI/YAO brought up the issue of chronological versus emotional age. Intersect does not like to transition clients when they know that the client is not emotionally ready to move. EPI/YAO has more flexibility and thus can keep clients in appropriate groups. One service provider from EPI/YAO gave an example o f a client who is 19 and functioning at 14-15: “She doesn’t have any adult skills and should not be in AMH. W e’re keeping her in the youth group because she wouldn’t survive in adult.” One Intersect service provider summed it up by saying: “When we look at transition, it shouldn’t be that up to 19 is a child and 19 and up is adult, because we should see the client together.” The way the two systems are set up at present does not allow for a period where both AMH and CYMH see clients at the same time: On paper, it looks like all the systems/Ministries work on one team, but in actuality our mandate is, basically, they don’t spend any time with them after 19 and AMH’s mandate is “we don’t see them until they are 19” so the idea o f transition is mutually exclusive to these two ideas. It appears that the age o f transfer for clients from CYMH to AMH varies from situation to situation. There is general agreement that the timing and age o f transfer needs to be planned further in advance and that some flexibility from both Ministries with regard to age definitions would assist in this process. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 85 Service Users Client 1 completed the transition from Intersect to EPI/YAO about four months prior to turning nineteen. This client had seen service providers from both Intersect and EPI/YAO for about six months to a year and then the client decided to stop attending Intersect as the number o f appointments (to manage in a week) were becoming too much. However, it is unclear how the sessions at Intersect actually ended. The client said that (s)he decided not to make any more appointments with the Intersect counsellor, “I don't know if I said anything but I just stopped the appointments and didn’t make any appointments.” Client 2 moved to AMH a few months prior to turning nineteen. This client was diagnosed at eighteen with bi-polar disorder. The client was made aware that it would be necessary to transfer to AMH as long-term care would be required. There was very little overlap o f services in this case. The client explained that “I got an extra month once I turned 19 with one o f my counsellors, just to get, I can’t remember, something extra done. But it was just a month and it wasn’t with my psychologist or anything else.” When probed further about the short overlap o f services, client 2 said: Well I liked it because even though I wasn’t their patient anymore including [Intersect counsellor], they were still there with me like helping me, making sure that all the loose ends are tied before I moved on to make sure that like I don’t know...I wasn’t left just dangling. Client 3 could not remember exactly when the transition to AMH took place, but responded, “ummm maybe 18. 18 or 19.” There was no overlap o f services for client 3. The counsellor and psychiatrist at Intersect helped prepare the client for the transition to AMH and the counsellor offered to accompany client 3 to the intake interview at CRU, but client 3 said, ‘T thought I’d try it alone.” Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 86 Service Provision Administrators Both administrators acknowledged that the service provision within CYMH and AMH was quite different. Furthermore, they both believe that many clients find it difficult to adjust to the change in format o f service provision. As one administrator articulated: I think that there’s a difference in how Mental Health service provision is approached across CYMH versus AMH and that in itself can create a difficulty in terms o f expectations and in terms o f the types o f services that have perhaps come to be expected through the Child and Youth system. Some o f that is lack of resources and some o f that is a different approach to service provision. Now on the flip side o f that the time and attention spent in providing services to children and youth is far more time intensive and I think more supportive and more readily available within that system than it would be I think perhaps perceived to be in the AMH system. The other administrator illustrated the differences between the two systems service provision by means o f an example: You [the client] show up for your one hour appointment once a week [in AMH] where you know I think the youth system still allows for children to be case managed in a way that is much more assertive and there is a lot more programs and services for those youth where they turn 19 and they are gone. The first administrator also articulated the cut off o f services once a client reaches 19 years o f age, “when a youth reaches 19 very often services just stop and you’re 19 and that’s it.” Although service providers can see clients more frequently and fulfil a more supportive role in CYMH, it is still an office-based approach, in contrast to an outreach approach that is being gradually introduced within AMH: All o f Mental Health and Addictions services within Northern Health have moved to an Outreach/Assertive Case Management model and are in the process of moving away from that office based, one hour a week type o f a model, whereas the Child and Youth system is still somewhat entrenched in that office space model. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 87 There are outreach/assertive case management teams within AMH, particularly the EPI team, whereas Intersect cannot, at present, offer that form of service, “based on how they are structured or just based on work load and capacity issues alone.” One administrator speculated that service providers from CYMH are wary of transitioning clients to AMH because o f the differences in the form o f service provision between the two. 1 think for some of the clinicians that have worked really intensively with some of these kids there is a real concern that they won’t get the level o f support and that intensive wrap around that they have perhaps been used to in the past and that the family won’t get that kind o f support and I think those are legitimate concerns. I think the AMH System is still relatively focused on individual versus family systems or versus support or care systems and that can be difficult to manoeuvre because there are some youth that realistically need that kind o f intensive wrap around up until the age o f 24 and some o f them maybe even a little bit beyond, just in terms o f their own emotional and cognitive development and the effect that a serious mental illness can have on your growth and your development and so they may need those extra pieces o f that. Realistically those pieces don’t exist in the Adult System so that is a concern. CRU and other AMH services such as COAST do not have the capacity to offer the in­ depth/intensive service provision that Intersect can, although as one administrator highlights, EPI does bridge that gap to a certain extent. CRU is the gateway to AMH services: they determine if a client needs AMH services and which service is appropriate: So it [a referral] would come in through CRU be identified as appropriate for the longer term AMH Team and then they would be waitlisted for the AMH Team. Then it’s about does the AMH team have the capacity to create those linkages and the answer to that right now is N o .. .CRU are not case managers. They are simply the intake and screening, a very brief component of the entry into our AMH system. The form of service provision between the two Ministries is quite polarised, and one administrator believes that the CYMH system is ready to build the linkages with AMH, but she is unsure if AMH is ready: “It really does require them to do business in a Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 88 different way. Their focus is entirely different, their approach is different, and it’s very individualistic versus family oriented.” In order for clients to remain in mental health services the service provision has to meet their needs. Presently, it seems that at 19 years o f age, clients lose all their services and have to start afresh within AMH. One administrator highlighted that there needs to be an overlap in service provision and she gave the following example o f how she has accomplished this: There are some kids where I have gone to maybe three (AMH counselling sessions) before they have said “you know what I don’t need you there”, there’s others where I have gone once, they have met their new worker at that end but I might see them here. From the perspective o f the administrators, it seems that the service provision between the two Ministries is different, which can make it difficult for the service users to adjust to the AMH system. However, according to one administrator, if CYMH service providers accompany clients to their initial AMH appointments, this can help facilitate the transition process and help the client adjust to the new system. Service Providers The three groups o f service providers also highlighted the different approach to service provision throughout mental health services and they speculated about how this difference impacts on clients. Service providers from CRU explain that clients have few life skills and in AMH nothing is offered. As CRU is the gateway to AMH services, they see clients for approximately four sessions “that’s the paperwork standard; we might drag it out to 6. During those four sessions we find out where to place clients.” Intersect service providers highlight that CYMH tends to chase clients, and treat them differently. One Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. service provider speculates that because AMH treats them so differently “the kids can’t handle it and don’t turn up for services.” The same service provider speculates that those kids end up in the forensic system or in the hospital. Service providers from CRU also speculate that during the period o f transition o f services, many clients end up in either the forensic or hospital system. Another Intersect service provider said: “The clients still need the structure and support in their lives and they don’t get that from AMH so a lot of clients end up finding the structure in the forensic system.” One o f the key differences in service provision between CYMH and AMH is the frequency o f contact. Both CRU and Intersect service providers discussed this. As one CRU service provider put it: “There is not a hope o f seeing clients on a weekly basis: there are no programs in AMH to see clients on a weekly basis.” An Intersect service provider said: “At AMH they have less contact with the clients - maybe once a month/2 months/3 m onths... and if clients miss an appointment their file will be closed after a couple o f misses.” EPI service providers also discussed the barriers to service for clients in AMH: “It’s difficult for clients because they don’t function very well with appointments.” The service providers from Intersect contrast AMH contact with clients with their contact with clients: “At Intersect, we tend to coddle the kids a bit more and see them more frequently. High needs kids can be seen 2-3 times a week if necessary.” Plus, Intersect service providers are more likely to chase the clients to ensure they are making their appointments. One service provider commented that they might chase clients because many o f the clinicians have a social work background and thus they fill that role. Another Intersect service provider said, “AMH will not go looking for clients Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 90 to give a service to. Those who come through the doors will receive a service, but if you’re not there to get the service, they won’t give you the service.” Although Intersect may see clients more frequently than AMH, they still have an office-based approach to service provision. As one service provider from EPI/YAO articulates: Part o f the problem is that Intersect is not outreach-based, they are office-based which tends to be problematic for clients, especially psychotic clients because service providers need to be outreach and assertive...because Intersect is not outreach-based, clients in general are not getting the best service. EPI/YAO highlight that this is also an issue on the AMH side o f service provision: “There are not enough resources/supports and it is office based.” Although the approach at Intersect is office-based, Intersect service providers say, “The children get the service they need from them.” Service providers from CRU explain that at AMH “people have huge caseloads... Systems have gone into crisis response versus preventive response and we run around putting band-aids on a lot o f stuff.. .you have to become a bit of a drama queen to get client services.” They gave the following example: With the anger/irritable moods, w e’re seeing that more, just because there is no where for them to go at this point in time; we see them until the treatment is in place...and that’s not within our mandate to do, however, I’ve been picking some o f them up, because no-one else will take them. Intersect service providers also discussed the Assertive Case Management approach that AMH is now adopting. Intersect service providers agree that, in principle this could work but because there are no services or there is a long waiting list at the referral services, they believe that it is not working. Assertive Case Management will only work if there is a service to refer the client to. “In AMH there are no services that deliver therapy, life Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 91 skills training, and academic development etc. they’re not in place.” Although CRU service providers did not mention the Assertive Case Management approach, they did highlight that clients are “in limbo if they need continuing services.” The service providers from CRU also said that if the appropriate documents/assessments are not completed, the process for service provision is slowed because programs have mandates. As one CRU service provider said: “we are supposed to have a seamless system where every door is the right door but everyone has their mandate so that door is not always open.” One o f the EPI/YAO service providers summed up the issue regarding service provision: All programs work differently and case managers might have different views/philosophies o f what should be the next step [for the client]. Clients have to make new connections with their case manager and the new system and this can be difficult. That’s why having solid transitions is important and being able to do them over a period o f time, but there is a different systems approach [assertive/outreach versus office based]. Service Users Client 1 believes that the outreach service provision the EPI team offers is preferable. This client did not like having to attend lots o f appointments: I think its better when [EPI/YAO counsellor] comes to me and picks me up kind o f thing just seems more personal. It’s easier to talk to someone that’s more willing to you know stretch a little bit further for you than someone that sits in an office and you’re in an office with a box. The overlap o f appointments for client 1 lasted approximately six months and at first the client felt this was beneficial. However, after a period o f time the client felt that it was no longer necessary to access both. Throughout this time the client saw the same psychiatrist, and continues to see this psychiatrist while accessing EPI/YAO services. When asked if it was a good thing to continue with the same psychiatrist, client 1 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 92 responded, “I like keeping the same people because I don’t like to have to tell my story or have it explained and people not understand. It’s just consistent. I like consistency and routine and that’s more routine for me.” Client 2 talked about the friendly atmosphere at Intersect: Everyone is really friendly here [Intersect], like I was surprised how many people knew my name just because that I wouldn’t think that they would and they remembered my face, even now when I walk in the mall. I thought that was really neat that they were able to get on a personal basis, that kind o f thing makes you feel comfortable when you are there. Client 2 also believes that the Intersect counsellors “went above and beyond what they had to do really.” The service provision from Intersect had been, overall, a positive experience for client 2. The one downside in regards to service provision according to client 2 was the staff turnover. Client 2 started receiving services from Intersect between the ages o f seventeen and eighteen. Within an 18-month to 2-year period, client 2 saw three different counsellors. The third counsellor was very helpful as quoted above and client 2 understood that “people are human, have lives, we move on; stuff like that.” Another impact o f the staff turnover, according to client 2, was the need to retell the story from the beginning: So I got three different counsellors and each one o f them were like “yeah I got the report but let’s start over” and over and over again, like three times. You know even though they had a big stack o f everything that I had already said... it was not so much that it hurts when I talk about it, it’s just annoying to have to bring it up all the time. Like after the third counsellor they had a file ‘this thick’ with the other two counsellors, but it was “well let’s start again” so this was like three different counsellors and opinions and stuff like that too so that’s the only thing that frustrated m e...they were nice and everything it was just having to re-tell everything again. In contrast, client 2 found that at AMH, the intake counsellor did not ask for a retelling o f the story: Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 93 They are like “you don’t have to tell us anything you don’t have to. Just tell us what you need help with and we will help you with it” which is what I found was really nice they weren’t just like “okay let’s just start from the beginning” and poke everything....obviously I already know what I need help with after 1 told my story three times (laugh). Later in the interview, client 2 spoke more about the kind o f service provision from AMH: It was more transitioning me from being a dependent child and into an independent adult plus learning to work with a mental illness which w as....it was a lot o f help. And half the things I wouldn’t have been able to do if it w asn’t for them like I would be stuck at home (laugh) an awful lot without the bus pass or without you know having somewhere to go when I am all stressed out and stuff like that, so that was really nice. Client 2 was receiving one-to-one counselling, seeing a psychiatrist and was attending a support group at AMH: I am in peer groups where there are people with similar mental illnesses as mine. At peer group we just either do like activity or we do learning (laugh) so we either get to go swimming or for a walk or we have to sit in the class and learn about medications we are on or diet or you know how to deal with stress or stuff like that. Client 3 received good service from Intersect. The counsellor “took me out places because I don’t like sitting in the box office. W e’d go play pool and talk.” Client 3 started attending Intersect at 13 or 14 but “I didn’t get on well with my first counsellor and then I moved to [counsellor’s name]. I stuck with [counsellor’s name].” Unlike client 2, client 3 continued with that same counsellor before transitioning to AMH. In contrast to the good service provision at Intersect, client 3 did not receive good service at AMH. When asked what happened upon moving to AMH, client 3 responded: I talked to one o f the psychiatrists I think it was and they really didn’t ask me any questions and didn’t really do anything to make me feel comfortable at all and I have a counsellor there too and I am not too sure what the whole point o f having a counsellor there when he is not really helping me so ... Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 94 Client 3 received an evaluation from a psychiatrist upon first moving to AMH. I asked client 3 to elaborate more on that evaluation: He didn’t really try to evaluate me. He just asked me a few questions. He didn’t know why I was there. He couldn’t understand what he was doing and I just pretty much left, so I wasn’t too happy with the whole situation. 1 had a follow-up meeting with client 3 to review the transcript, at which time more information was provided. Client 3 spoke more about the psychiatry evaluation: “The psychiatrist didn’t know why I was there and told me ‘if you need me to fill your prescription let me know. Let me know when you need to come see m e.’” As with client 2, it seems the service providers from AMH were trying to transition client 3 to an independent adult, when it seems client 3 was not ready for such a progression. The responsibility o f arranging appointments and managing medications, on top o f dealing with other mental health issues was too much for client 3, with the result that client 3 no longer accesses AMH. Turf Issues ‘Turf issues’ refers to the opinions administrators and service providers have regarding who should be seeing or have responsibility for service users. Administrators The administrators spoke about ‘turf issues’ particularly in relation to EPI and Intersect. As one administrator said, “There’s plenty o f work you know and more than we can all do together but the response to the EPI team was very clearly a turf issue in terms o f you know now you’re doing our job.” The other administrator said, “There is certainly enough work for both o f us.” Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 95 Both administrators discussed the need for a formal protocol between EPI and Intersect to avoid the possibility o f ‘turf issues.’ One administrator put it: I am all about formalizing those systems and really identifying what are the key components and then getting commitment on both sides to ensure that those components are agreed to and recognized and that w e’re building together because I think we need to do that in terms o f getting around some o f that personality driven territorial kind o f turf stuff. The other administrator said: I would love to work formally, more collaboratively with them [EPI] but again I have asked for “Could you give me a program description, a clear sense o f what your mandate is because we both don’t need to be doing the same jo b ” . .. we don’t want to compete either because really there should be consistency in how we approach Child and Youth Mental H ealth... that needs to be cleared up and formally do a protocol with them and have a good understanding o f what their team really is going to take some responsibility for. One o f the administrators also referred to the impact of financial cutbacks on turf issues within services: Anytime we get into situations where there are cutbacks or there are risks to services then those services tend to close ranks, incredibly territorial things start happening, then it really does get in the way o f building the systems that need to be built. The second administrator put it, “I don’t see us as competing, although there is a bit o f a turf thing that happens you know when it comes to dollars.” Some o f the discussion surrounding the theme o f ‘turf issues’ links back to the ‘communication’ theme discussed above. One o f the administrators is quite specific in making this link: There’s no system in place out o f the AMH system to link in with those MCFD systems and so very often they end up again in that kind o f conflictual kind o f a situation where then they close ranks and they tend to withhold information. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 96 Service Providers Some o f the service providers spoke to the ‘turf issues’ that exist throughout mental health services. As with the administrators, service providers from CRU made reference to the impact of cutbacks on turf issues: “Because there is a lack o f services people tend to guard their services for the most needy people. It’s a turf issue.” Likewise, one o f the service providers from CRU highlights, “It can work both ways, for example people say, ‘that’s not our responsibility, that’s yours and what are you doing with him - he’s our client.’” Due to the lack o f services that are available for clients, services protect their own program and want to get the clients into their program to ensure that they maintain their funding. Intersect service providers also linked back to the ‘communication’ theme when discussing ‘turf issues.’ As one service provider said, “ICMs don’t involve AMH and vice versa because o f the territoriality.” However, in contrast to the issues raised by the administrators regarding turf issues between Intersect and EPI, the service providers did not observe turf issues to be a problem. Both Intersect and EPI/YAO talked about the partnerships they share with clients and did not indicate that there is a ‘turf issue.’ EPI/YAO service providers outline some o f the reasons why they work with Intersect: If a client is enrolled in the Intersect school program, they have to have an Intersect counsellor, even if they are psychotic. “Also if a youth has been with Intersect and psychosis hasn’t been identified previous to that and now it’s coming out, most times we would work together because they have an established relationship with the person.” Another reason for working together is if a client is requiring injectable medication, the psychiatric nurse from the EPI/YAO team Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 97 would administer and monitor the medication, while Intersect service providers fulfil the counselling role. A final reason for the two services working together is for clients with concurrent mental health and addictions issues. Clients can see a psychiatrist at Intersect and have their mental health issues addressed with the service providers there, while the EPI/YAO team would address the addictions issues with the client. Both groups of service providers believe this to be a fairly positive relationship and did not express any ‘turf issues.’ Client Need Administrators Both administrators highlight that there have been instances when the needs of clients have not been met during the transition process. One administrator offered an example o f a transition that did not meet the client’s need and was unsuccessful due to systemic factors: Poor planning on the part o f those responsible for developing those plans for kids. An example is today we [CYMH] have a youth coming through Intake; this youth has not been known to us. It would have helped if we had maybe seen the youth before and we could have done something a bit different but he had not been known to us and the social worker wants a complete psychiatric and complete psychological. This youth is turning 19 in August so if we Intake him, even today, there is no way he is going to get seen before August. He will be lucky to be seen by psychology especially within the next 6 months. So it makes absolutely no sense to Intake this poor young man here knowing that by the time we complete our assessment it will be time for him to move over and he is going to sit on our list and then he has to be re-Intaked over there. So we did actually call CRU - the adult intake system and said this young man is 19 - two months away from 19 it would just make sense because he is wanting some specialized assessments, it would just make sense to get him on your list over there and they agreed and they were going to set him up but then the social worker called back and said “no, no, no I want him seen by you guys because I want this done right now because I need to know in terms of setting him up on his own that he is entitled to a disability and in order to do that I need the psychological testing and the psychiatric testing”. Well that’s a little too late you know as far as I am concerned if the social worker had a question around that and she’s wanting him to go into Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 98 some you know kind of care outside o f the Ministry after he turns 19 and she requires that documentation to support that kid she should have been on the move on that. Although this is an example o f a child in the care o f the ministry it still demonstrates how the needs o f the client can be lost in the politics o f systemic structure. One o f the administrators talked about how client need should be incorporated into the transition process: If you were a youth moving through the system what would that look like to you and how would that feel? Then those glitches and those sticking points really need to be negotiated behind the scenes by the service providers and there again would be an issue that relates back to the youth’s development what kind o f supports do they have in place where are they at emotionally and cognitively in terms o f their ability to live independently which is huge. Sometimes it’s about family and if they have good family support they tend to do better if they remain in the Child & Youth Mental Health system until they are well transitioned and well grounded in the Adult system. Both administrators relate client need to the time o f transition. As reported above, the age o f transfer and client need should be considered together when transitioning clients. One administrator spoke about different clients needing to transition at different times, depending on their circumstances. However, the system still prevents that from happening consistently: It’s really about what does this person need and so w e’re in a process too where w e’re needing to do education within the Adult system and things like that which really gets in the way o f you know that client focus you know because we have clinicians at Intersect telling us you know this makes absolute sense and you know they are really keenly involved in that in that joint care planning but then telling us behind the scenes that they have been told that they can’t participate in those meetings anymore. One administrator believes that all clients need a good support system in order to succeed in life and overcome the mental health issues they are facing: Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 99 I am just a firm believer that if every child had 2 or 3 positive strong role models, adult role models, they are going to survive, they are going to make it even if they are sick and these kids mostly do have, if not two parents, for sure one and then also one or two really healthy adults around them whether that’s an uncle or set of grandparents or siblings. The CYMH administrator talked about some o f the questions they ask themselves when considering transitioning a client to AMH. These questions relate to what is the best for the client: We would make a decision through clinical supervision is it in the best interest to cut this kid away right at 19, do we want to hang onto them for a couple o f months? It goes back again to can we complete some work? Is this youth ready to transition over? Is there a clinician at the other end that we can connect to? Perhaps he is on a waitlist over there, so we really just don’t want to drop the ball. Service Providers Service providers from Intersect talked about the needs o f clients when considering transitioning them to AMH: “It also depends on the need o f the client and it’s a team decision, between doctors, client, and family members.” Intersect service providers also consider delaying transitioning clients if they do not think it is in the client’s best interest, for example, if the client is destabilizing. EPI/YAO service providers shared that clients stay with their service for approximately 2-3 years; however it partly depends on “what is the best fit for the client, and how stable the client is.” Service providers from EPI/YAO also discussed client need when it comes to the practicalities o f the transition process. If the client wants an EPI/YAO service provider to accompany them to the service they are transitioning to then they will, “whatever is the best fit for the individual.” Likewise, Intersect service providers accompany clients to AMH if this is what they want, although some service providers doubt if it helps the client transition. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 100 EPI/YAO service providers also said that the different approaches to service provision between EPI/YAO, Intersect, and AMH make it difficult for clients and do not best meet their needs. This is particularly so for clients living with psychosis. The service providers from EPI/YAO shared that the needs of some clients with psychosis are not being met at Intersect because o f the office-based approach there and so those clients have already “fallen through the cracks” and come to EPI/YAO through the hospital or CRU. “It’s difficult for clients because they don’t function very well with appointments.” The office-based set-up at both Intersect and AMH does not, in the opinion o f the EPI/YAO service providers, best meet the need o f clients. Intersect service providers talked about the emotional age o f clients and the anxiety associated with the expectation to transition to AMH by 19 years o f age when some clients are not ready for it. Likewise, service providers from EPI/YAO shared that “service should be based on the best fit o f the client, not age.” EPI/YAO has the opportunity to stabilize clients before transitioning them to other services, which they believe is better for clients and also for the service to which they are transitioning. Service providers from Intersect talked about the “two-pathway intake approach” as not being the best for clients: “If a 16-year old client appears in emergency, he/she would do an intake with CRU as opposed to being sent here, because that is the hospital set up.” These two pathways to intake are not the best for clients, as it means they have to go through a multiple intake process before receiving the appropriate service. As one service provider put it: “Even people within the system are confused about the process, because there is not agreement on age cut-offs.” Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 101 Service Users Client 1 feels that appropriate services are provided. Accessing joint service providers was good for a while, and something that the client deemed necessary. At the client’s choosing, the Intersect services stopped and the EPI/YAO services continued. This client was explicit in articulating that (s)he did not want to go to AMH. After accompanying a friend to a session at AMH, this client had felt very uncomfortable and did not want to go there for services: If I didn’t come here [EPI/YAO] even though I was supposed to go to Mental Health, Adult Mental Health, I wouldn’t have the supports that I have right now. I don’t like sitting in the like sitting rooms like no offence, not that I am better than anyone else there, but some just seems to have a little bit more problems than most. And it’s just that the way that’s set up I guess. It’s kind o f cold and it’s like not very comfortable. The needs of this client were met by ensuring that EPI/YAO services were available and the client continues to receive help and support there. Client 2 also feels that her/his needs were met at Intersect and are continuing to be met at AMH. Presently, client 2 has counselling once a week, monthly appointments with the psychiatrist to monitor the medications and attends a peer support group. When asked how many attend the support group, client 2 said, “It always depends really because people with mental illnesses aren’t really predictable (chuckle) so it could be like anywhere from two people to five, six.” For client 2, the transition to AMH was “Really fast, it was like within a week.” Client 2 explained that (s)he was in the high risk category, “high risk is people who need counselling right off the bat, who still don’t have their medication under control, people who have the risk of maybe not having a home or stuff like that.” Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 102 Unlike clients 1 and 2, the needs o f client 3 were not met upon transitioning to AMH. Client 3 had an intake session with a service provider from CRU and had asked for help with an alcohol problem as well as managing the bi-polar disorder. Client 3 said “They told me they would but nothing happened. They just got me the counsellor I have.” When client 3 started seeing the counsellor assigned by CRU (s)he asked again • for help with drinking but, “The counsellor said ‘well you’re 19, o f course you’re going to drink.’ He didn’t see it as a problem. But 1 wanted help with it.” On another visit, with the counsellor, the grandmother o f client 3 was there to try and get him/her help with drinking. At this point client 3 reported that “the counsellor said, ‘okay, maybe this is a problem, so don’t drink or just drink juice at parties.’” Client 3 feels that AMH has not met his/her needs and said “I still want to party with my friends and drink, but I want to control it and he won’t help me do that.” Client 3 has requested an alcohol counsellor but neither the service provider from CRU nor the counsellor assigned at AMH has organised this. Client 3 would have preferred if: They would have tried helping me and given more information instead o f just thinking because now that I am an adult that I can make my own decisions about everything. But since they think you are an adult now and not really a kid they just think you can do everything yourself now...which maybe you probably can but still you want someone else’s opinion to help you but they didn’t really give me that. Client 3 has not been to see the AMH counsellor in six months, but disclosed information during the interview that indicated (s)he would still like help with the drinking problem and “once in awhile I would like to talk to someone, but like I don’t really know where.” I felt I had an ethical obligation to try and do something to help client 3. With his/her permission staff at Intersect were approached to see if a new counsellor at AMH could be arranged or some solution reached that would ensure the needs o f client 3 are being met. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 103 Client 3 was agreeable to this and this information was reported to the clinical supervisor at Intersect to determine what can be done for this client. She explained that client 3 could call Intersect and ask to speak with the counsellor (s)he saw while receiving services here. They could then arrange some session time and determine what would be the best course o f action that would meet the needs o f this client. The clinical supervisor explained that they could not contact the client because this information was disclosed during a research interview. Client 3 was contacted, to explain that (s)he could contact Intersect for help. Client 3 said “I will look into it for sure and I hope I do get the help I need.” Workload Administrators The issue of workload was mentioned explicitly by one administrator. It seems that workload is a factor that can cause problems in the transition process. This conclusion is based on a retrospective look at those transitions that have not gone well: “we have spent time to track it back at different times and we often find that it’s a workload issue.” Both administrators implicitly addressed the issue o f workload when they spoke about the fact that there is enough work for both CYMH and EPI. If the two services work more collaboratively then increased workload may not have as negative an impact on the transition process. Service Providers The three groups o f service providers mentioned high workload as a negative influence on their ability to provide appropriate service. One service provider from CRU said, “People have huge case loads - it’s all bare bones and a time factor.” Another Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 104 service provider from CRU mentioned that the mental health system is “in crisis response.” Everyone is so busy that they do not have time to incorporate a preventative measure into their work. One service provider from Intersect mentioned that the workload probably did not help their relationship with CRU. This is not the case for the relationship with EPI because these two services share the workload for some clients with each other and thus it is easier to communicate. Some Intersect service providers also thought that workload impinged on the suggestions from the Joint Ministry Working Group to begin transitioning clients at 17 years of age. The paperwork in CYMH is more onerous in comparison to AMH according to one service provider who has worked in both systems. She believes that this can act as a barrier to transitioning clients because service providers may procrastinate in completing the required paperwork. All service providers from Intersect agreed that they would do a much better job if they did not have the workload restraints. As one service provider from Intersect said: We have twice as many clients as we should have and half the therapists we should have and I’m sure AMH is the same. But it also wouldn’t be an issue if AMH followed the mental health transition protocol agreement, because in writing it doesn’t matter about their workload. Best practice’s based on this [the transition protocol] says they have to open the doors for us at 17. That’s not fair to them but that’s what it says. EPI/YAO service providers sum it up: “Every system in mental health and addictions is taxed.” Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 105 Service Users One o f the primary impacts o f service provider workload is the number o f times that they can see service users. Client 1 felt (s)he saw the EPI service provider frequently enough. In general they see each other on a weekly basis, sometimes more if it is necessary, but rarely less. While at Intersect, client 1 saw the counsellor “probably once every two weeks as I got more time for me to be 19 and out o f there, they were lessened definitely.” Client 1 determined the frequency o f the appointments at Intersect, “yeah it was my choice because I am the one that makes the appointments.” Client 2 attends counselling once a week and sees the psychiatrist once a month at AMH. At Intersect, client 2 felt that the staff “did a lot for me. I was really surprised.” Although workload is an issue for staff, the counsellor for client 2 helped out a great deal, “She was with me every step of the way until then. Like she went to my appointments for my disability and welfare, standing in line for four hours she was there with me and everything like that too.” Client 3 also reported that (s)he could see the AMH counsellor “whenever I want to.” However, client 3 has not seen the AMH counsellor in about six months “because I just don’t really want to see him because I don’t like him.” Another counsellor has not been arranged and the AMH has not made any contact with client 3 in the six month period since they last saw each other. This could be in part due to workload, but one is left to speculate as to why the counsellor has not contacted the client. At Intersect, client 3 felt that (s)he saw the counsellor and the psychiatrist frequently enough. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 106 Although workload is a problem for the service providers and administrators, it has not, had a negative impact on the three clients interviewed. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 107 Chapter Five Discussion Three questions from the questions posed to the participants (Appendix B) will be given primary attention in this chapter: 1. What has been your experience or observation of the transition process from CYMH to AMH? 2. What are the advantages and disadvantages o f the transition process from CYMH to AMH? 3. What changes would you make to the transition process from CYMH to AMH? Questions one and two will be discussed in the next section, “Similarities and Differences across the groups.*’ I will discuss question three in the “Implications for Policy” and the “Implications for Practice” sections. Similarities and Differences Across the Groups During the data collection there was one particular theme which all the service providers and administrators find agreement: lack o f communication. These two groups of participants also offered similar reasons for this problem, for instance: no working relationship between the CYMH and AMH service providers; no trust around providing ‘best service’; limited time to connect with each other; and minimal sharing o f information. The concept o f “who you know” also arose as affecting the level o f communication between the two Ministries. Some o f the EPI service providers had a working relationship with service providers from AMH and Intersect, but the other Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 108 service providers did not know each other and they all agreed that this has a negative impact on communication between them. Regarding the age of transfer theme, the administrators and service providers all agreed that this is something that should happen earlier, and they all acknowledged that it does not at present. The age at which the service users transitioned to AMH also indicates that the transition does not happen earlier, although no information was gathered indicating when Intersect counsellors began putting the transition process in motion for these clients. The perspective o f the administrators and service providers is similar concerning the presence o f turf issues and the reasoning behind this issue. Funding (or lack of) often causes services to “close ranks”, “withhold information”, “fight to keep their own clients”, and “become territorial.” These two groups o f participants seem to accept that this will always be an issue, but also hope that if communication between the services improves then this will become less o f an issue. Finally, there is widespread agreement amongst the administrators and service providers that excessive workloads have a negative influence on the effectiveness o f the transition process. They also agree that this can really only be rectified if more funding became available. Although service providers agree that the transition process should begin earlier, there are some differences in their perspective surrounding ‘when’ and ‘why’ it is not happening earlier. Service providers at CRU reported that Intersect service providers do not initiate contact with them about transitioning clients until a couple o f months before the clients turn nineteen. In contrast Intersect service providers reported that if they tried Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 109 to initiate the transition any earlier, the service providers from CRU tell them to call back when the client is closer to turning 19 years o f age. The difference in perspective from CRU and Intersect service providers speaks to the lack o f communication and linkage between these two services. O f the two clients who transitioned to AMH, one reported that the transition happened just before turning 19 years o f age and the other could not remember exactly when the transition occurred, but reported around 18 or 19. It is unclear for both these clients when the transition to AMH was put in motion and when it was completed. It seems, however, that for client 2, transitioning just a few months before turning nineteen was enough time, but for client 3 it was not. Service providers from EPI and Intersect suggested that transferring clients to AMH should not be based on age but on best fit for the client. In the case o f client 1, transitioning this client to EPI/YAO met that client’s needs as client 1 said in the interview that (s)he did not want to go to AMH. The needs of this client were therefore met. However, client 3 would likely have benefited from continuing at Intersect or making a slower transition process, with the introduction o f joint service provision as discussed below. There were some differences between one administrator and the service providers regarding EPI. The administrator from Intersect articulated that she was unclear o f the mandate o f EPI and expressed an interest in meeting with them to formalise a relationship between the two services. In contrast the service providers from Intersect and EPI did not express a need for this. The service providers from Intersect all expressed that the relationship with EPI was positive and they felt more comfortable transitioning clients to Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 110 EPI services versus AMH. Service providers from EPI also explained that the relationship with Intersect was positive, although they did express that there is still room for improvement, particularly around communication. During the interviews with the two administrators, I had asked for some reasons as to why clients would transition to AMH later than their 19th birthday. The AMH administrator reported: I am encouraged to hear that MCFD is [keeping clients later than 19] because I am not aware o f a lot o f cases where they carry the youth past 19; that’s always been written in stone that they wouldn’t do that and it’s been a huge sticking point for us in terms o f our negotiations across the systems and in terms o f our planning. So that’s fairly recent if that’s occurring because up until now it’s always been very clear from their executive that that was not going to happen and it was 19 and then adult services needed to be ready. This is in contrast to the Intersect administrator and the service providers from Intersect. They all provided various examples as to why clients would continue on with their services beyond turning 19. Furthermore, the transitional protocol agreement makes reference to the fact that clients can receive services at either or both CYMH and AMH until their 21st birthday. Despite the protocol agreement and the examples o f clients continuing at Intersect beyond their 19th birthday, service providers still claim that this is not common and that there needs to be a blurring o f that age line for transition. There were also differences in perspective regarding earlier transitions, perhaps for those clients as young as 17 years o f age. Service providers and one o f the administrators said that the earliest that clients can start accessing AMH services is 18, however, one administrator provided an example o f a 16 year-old transitioning to AMH and others at 17. This one administrator believes this is becoming more common, but this Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Ill is in contrast to the other data gathered from the service providers and other administrator. Differences arose in the experiences o f the service users interviewed. Client 1 was glad to transition to EPI as opposed to AMH. Although client 1 had no personal experience o f attending AMH, (s)he believes that (s)he would not have the same supports had (s)he moved to AMH. Client 2 reported that moving to AMH was a positive experience and the counsellor there has helped client 2 in the transition to adulthood. Client 3 transitioned to AMH and this was a negative experience for him/her. Client 3 did not receive support with an alcohol problem and was in fact told “you don’t have a problem” by the counsellor at AMH. It would likely have been worthwhile to transition this client to EPI or to delay the transition until the client had received more support and counselling for the alcohol problem. The three clients all provided predominantly positive comments about the service they received at Intersect. Client 2 made reference to the number o f counsellors (s)he saw while attending Intersect, but acknowledged that this is something often outwith the control o f the agency. Encompassed with that, was the need for each counsellor to have the client retell his/her life story, despite all the information being present in the files. This was not discussed with the service providers, so, no reasons for this requirement for a retelling o f the clients’ story were obtained. It could be viewed as a therapeutic measure or as a way o f building a relationship with the client, as opposed to reading the ‘thick’ chart. Despite the request for retelling the life story, all the clients reported that their needs were met at Intersect, but not all the clients feel that their needs are being met at AMH. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 112 The service users did have differing opinions regarding their desire to retell their story to different counsellors. Two o f the three clients expressed that they did not like being asked to retell their story from the beginning and would have preferred if the service providers built on what was already written in the case files. Also in the case o f client 1, (s)he would have chosen to have her Intersect and EPI service providers talk to each other about how (s)he was doing as opposed to giving the same information to each counsellor at each visit. In contrast, client 3 believes it is better for each counsellor to hear the individual story from the person as opposed to reading the file. The service providers from the three focus groups highlighted that clients cannot be seen as frequently in AMH as they can in CYMH. However, the three clients interviewed did see their EPI or AMH counsellor every week or “whenever I want to.” Although all the service providers were in agreement about the frequency o f counselling sessions offered at AMH, this is not reflected in the experience o f the clients who were interviewed. If more clients were interviewed, this trend may have then appeared. All the participants offered a variety o f responses regarding the advantages and disadvantages o f the transition process. Some were quite polarized, for example, client 3 reported that there were no advantages in transitioning to AMH, while client 1 said there were no disadvantages. Client 2 said that the disadvantage o f moving was losing the connection with the people at Intersect. The advantages for client 2 included the help (s)he received in becoming a more independent adult, and the fact that it was a fast transition, as (s)he was not put on any waiting lists at AMH. The service providers gave a variety o f advantages o f the transition process, such as: ‘who you know’ in each system; availability o f CRU service providers for clients Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 113 while they are on waiting lists for other AMH services; the fact that both CYMH and AMH services are locally accessible; most clients have accepted the fact that they need counselling; and, acknowledging that the transition process is an issue needing to be addressed. The disadvantages include: ‘who you do not know’ in each system; the different systems approach to service provision (outreach versus office based); no communication between Intersect and CRU; long waitlists; delay in referring clients to AMH; the strict age criteria; and, the fact that there is no overlap o f services for clients transitioning from Intersect to AMH. The administrators provided similar disadvantages to the transition process as the service providers: lack o f communication; rigidity around age criteria; long waitlists; and, the fact that some clients get Tost in the cracks’ if they are not properly connected with AMH. Client 3’s experience is an example o f this latter disadvantage. The administrators also explained that an advantage o f the transition process is that, if it is done well then it can be very smooth for clients. Client 2 ’s experience would be an example o f this. The administrators explain that if the service providers are able to connect with each other and prepare the client for the transition then it can proceed smoothly. The discussion of the advantages and disadvantages of the transition process during the data collection naturally led to the topic o f how to improve the process and these suggestions are outlined below. Implications fo r Policy It could be argued from the data collected that the recommendations from the regional transition protocol are not being fully implemented in Prince George. This is Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 114 based on the data collected from the services providers at the three services. One Intersect service provider said: “Best practices based on this [the regional protocol] says they have to open the doors for us at seventeen. That’s not fair to them but that’s what it says.” One o f the EPI service providers explained that it makes sense to start the transition at 17 years but the systems are not set-up to support beginning transition at 17: “You could not get a client into AMH at 17.” Again, an Intersect service provider commented: Is it fair to say that when they put it in writing, they should be held accountable for either taking it off the plate, or getting funding for the staff? But what’s not fair is to put it in writing and then just go away. As it stands, service users transition to AMH at or around their 19th birthday. Only one participant (one o f the administrators) gave an example o f any service users transitioning to AMH at seventeen. Furthermore, communication does not commence between the service providers from the different Ministries when it is evident early on that some clients will be transitioning to AMH in the future. Based on these outcomes, there are a few questions that the two Ministries should consider: 1. Why are the stipulations in the regional transitional protocol agreement not being implemented? 2. Is the recommendation that the transition process from CYMH to AMH start at seventeen realistic? 3. If it is realistic, how can it be better implemented? 4. If it is not realistic, what other policies/protocols need to be developed to improve the transition process? Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 115 5. When and how should the first steps be taken for transitioning clients to AMH? One o f the service providers from Intersect offers this suggestion to improve the transition process: The solution, I think, lies in actually formulating a transition team. The money is not there, that’s why it’s not there. But it would be jointly funded by MCFD and Health and it would address only the 17-25 year-olds, those without psychosis. Those who have psychosis are being followed by the EPI team and it’s w orking...but there are so many people without (psychosis) who are parentless...or just don’t have the support, who still are really screwed up for whatever reasons, whether they be classic mental health issues, whether it be a combination o f FASD and substance use stuff and all this kind o f thing, that don’t have anyone to follow them through that grey area. An alternative, but similar suggestion from the Intersect focus group is to hire a transition intake worker who maintains contact with both AMH and CYMH. One o f the service providers at Intersect explained that there is a mental health and addictions liaison employee within the Northern Health Authority who links AMH with addictions. This would be an appropriate model to replicate with regards to CYMH and AMH. This would help, for example, in instances when clients are referred to CRU from a doctor, so the liaison person would meet with service providers from CRU and determine if it is appropriate to take the case back to Intersect for intake. This would help prevent the client from having to do an intake twice. Likewise, the liaison worker could help facilitate the transition o f clients from CYMH to AMH by developing linkage and communication between the two services. The potential downside o f a transition team is that it becomes another new contact for clients. Therefore, as opposed to facilitating a smoother transition, it could in fact make it more disjointed as more service providers are involved. However, if there is evidence o f this working with mental health and addictions then it might be worth pursuing in CYMH and AMH. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 116 Some o f the service providers from the focus groups argue that service to clients should be based on the principle o f ‘best fit’ and not on age. Likewise, other service providers feel that there should be a period o f time where both CYMH and AMH can see a client at the same time. However, both these recommendations from the service providers already exist in the transition protocol agreement between the two Ministries and yet, evidently, are not being implemented in practice. One key aspect addressed by one o f the administrators is for a reinvestment of funds into the CYMH system. Moreover, both administrators believe there is a need for more formal “protocols between the service partners, no matter what ministry you are in and formalising those protocols as a group.” One administrator speculates that there may be a need for a provincial program or initiative developed to facilitate the transition process, similar to the Early Psychosis Initiative already in place. The administrator from Intersect also explained that she would like to develop a formal protocol with EPI to ensure there is a clear understanding o f the function each service offers. From this study, further policy development should be considered regarding an outreach versus office-based approach to service delivery. One o f the administrators made particular reference to this during the interview: The redesign and the reconfiguration of the services within mental health has meant that the adult services and all o f Mental Health and Addictions services within Northern Health have moved to an Outreach/Assertive Case Management model and moved away or are in the process o f moving away from that office based one hour a week type o f a model whereas the Child and Youth system is still somewhat entrenched in that office space model and is just on the cusp o f moving away from that so I anticipate that there may be a time when those two service streams look more similar. It seems that small steps have been taken to address the office-based versus outreachbased structure to service delivery. Furthermore, there is preliminary evidence from the Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 117 information collected from the service users to suggest that some o f the service providers from Intersect do implement an element o f outreach in their service delivery, despite not being mandated to do so. EPI service providers consistently adopt an outreach approach to service. However, it is unclear if other AMH services adopt an outreach component when providing services. It would likely be beneficial if there was more flexibility surrounding the approach to service delivery across CYMH and AMH. If an outreach component could be implemented in policy this would probably be o f benefit to service users. The service structure o f EPI could be used as a model to develop the outreach approach in the other services. Modelling from other types o f transitions that occur in mental health services could also help improve the transition from CYMH to AMH in Prince George. The administrator from AMH describes how transitions are working well from acute to community care: We get it around the younger youth at that front end piece [transitioning youth from acute to community] and how we transition youth back and forth so the systems are there, the model is there for how we move youth through the system but we haven’t transposed that model to our work at that end...to that next point of transition. However, some o f the service providers do not think that that transition process is working effectively, because it means that service users have to undergo a double intake. One o f the Intersect service providers explained: “If a 16-year old client appears in emergency, he/she would do an intake with CRU as opposed to being sent to Intersect because that is the hospital set up. So it becomes a two pathway intake approach.” Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 118 One o f the administrators elaborated on why she believes that the acute to community transition is good: If a referral comes in through Health [AMH] and comes to our attention it’s within that framework o f ‘every door is the right door’ so they would take that and do an initial assessment and then they have a system for transferring that onto Intersect and that would be picked up by Intersect. [This is] primarily for the youth that have gone through our acute programs or a residential program and they need some intensive after care planning which is a very good system for that kind o f transition. Although there is some difference o f opinion as to whether the acute-to-community transition is running efficiently, it seems, particularly from the point o f view o f the administrators, that it is worth investigating to see how it could be adapted to improve the transition from CYMH to AMH. Another difficulty between acute and community care surrounds the differences in age criteria. If clients are admitted to the hospital at eighteen, they will be placed in the adult psychiatry ward. When they are discharged they will likely still be in the care o f Intersect. Service providers expressed concern over this and believe that either the APAU should see clients until they are nineteen, or Intersect should stop seeing clients at eighteen. Service providers did not make reference to the blurring o f the age criteria for service delivery while discussing this issue, but argue that there should be commonality between acute and community service delivery. The model o f transition that exists between Intersect and EPI, and EPI and AMH is another area worth exploring for improving the transition between CYMH and AMH. Although EPI has only been operating for a few years in Prince George, it seems that transitioning to and from this service is working well. The service providers from EPI outlined how well transition planning works with AMH. They meet with COAST service Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 119 providers (to which they predominantly transition clients) and provide an overview o f the clients situation’s and the services to which they are connected. Therefore, it would likely be beneficial to consider modelling that process within other services. A final implication for policy arising from this research surrounds the central problem o f communication between CYMH and AMH. The three groups o f service providers discussed the use o f the computer program ‘SYNAPSE’ as a means of communication. EPI and CRU (and other AMH services, such as COAST) can all access and share information about clients through this system. Intersect, and youth/adult detox do not have access to the same system which makes communication between CYMH and AMH more difficult. It would, therefore, be worthwhile finding a universal means of communicating and sharing client files electronically. This would also involve Intersect introducing an electronic filing system within the agency. According to some o f the Intersect service providers, this should be happening in the future. If CYMH and AMH were connected electronically, communication would improve and the service providers would have a clearer picture o f how the client was doing. As one Intersect service provider explained, “If we had the same program we can see at a glance what is happening in their [the client’s] addictions treatment, and it’s easy to get the information.” This may also make it easier for clients, such as client 1, who do not want to keep retelling their story. Implications for Practice The suggestions in the Implications for Policy section would, noticeably, be reflected in practice. Lack o f communication between the service providers is one o f the key findings o f this research. Therefore, if some o f the above policy changes were Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 120 implemented, this would impact the practice o f the service providers and hopefully improve communication. As mentioned, the three focus groups all suggested that a universal filing system would be beneficial to their practice. Sharing a compatible system would make communication between the different service providers easier. However, it is not clear how feasible an option this is to implement. Agreement to an overlap of service provision, where both CYMH and AMH see a client at the same time, would mean the introduction o f ICM meetings where both service providers, any other representatives from other services, and the client would meet together to discuss a care plan for the client. ICMs are not a new concept, but there have been no ICMs where there are representatives from both CYMH and AMH are present. Service providers from both CRU and Intersect also suggest that representatives from both Ministries meet to discuss clients and to talk about the best way to transition individual clients. This would be different from ICMs as it would focus specifically on the method o f transition, and they may discuss more than one client at these meetings. This was also referred to as ‘joint rounds’ from some o f the service providers. All the service providers expressed a willingness to rectify the communication problem that is evident between the two Ministries and it seems these two types o f meetings would be a good place to make some improvements. Introducing a ‘grey area’ when both AMH and CYMH see the same client might help eliminate some o f the turf issues that were discussed during data collection. As one Intersect service provider put it: I don’t see why there is anything wrong with somebody seeing an AMH clinician, while I’m still involved and I think there is times when there is too much turf: and turf wars over a child is not the best thing to do. And, I think, if you want to transition the therapy to someone else and if it means my client is going to get Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 121 therapy, I will step out, IF I KNOW that after 19 they’re going to get somebody, and me stepping back will help them get that then I’ll do that. As it stands, turf wars do exist, and some service providers think it is because everyone is so busy. There is the risk, then, that joint service provision for clients may increase the workload for service providers. However, none o f the service providers expressed concern over this and believe that this ‘grey area’ o f service provision would be best for some clients. Service providers are concerned that service is presently not based on ‘best fit’ for the client, despite what is mentioned in the transitional protocol agreement. As one o f the EPI service providers articulated, “Services should be [based] on best fit for the client not age.” Another o f the EPI service providers went on to say: There also should be more flexibility in the adult system to take younger people... need to blur that chronological age line... I remember one situation where this 18year-old mother o f two, who was married, came in for some situational counselling, and they told her to go to Intersect, because she was 18. This idea o f ‘best fit’ goes both ways, as one EPI service provider gave an example o f a nineteen year-old functioning at the developmental level o f a fifteen year-old, and they have kept her in their youth group. If she was moved to the adult group “she’d be a total victim.” The way the CYMH system is constructed at present, this youth could not access any o f the services at Intersect because o f her chronological age. As articulated by some o f the service providers, the structure o f service delivery should be determined by ‘best-fit’, not by age. For the most part, Intersect stops seeing clients at 19 and AMH does not see clients until 19. Two o f the three clients interviewed recall moving to AMH or EPI just a few months prior to turning 19. The third client could not recall exactly what age the transition occurred. Therefore if some clients, for Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 122 example client 3, would benefit from staying longer at Intersect, this should be considered. Likewise, if a client is 17 and living an adult lifestyle perhaps transitioning to AMH at age 17 should be given consideration. From the perspective o f the service users, it seems that maintaining an element of consistency is beneficial for them. For instance, client 1 continues to see the same psychiatrist now at EPI. Client 1 explained that consistency is better and made the transition process easier. If some form o f consistency can be sustained for clients this would likely help meet their needs. This serves as another argument for introducing an overlap o f service provision, so that clients do not feel like they have been cut from one service and have to start afresh with a new service. Two o f the clients expressed that they preferred that their counsellor came to see them as opposed to having to go to an office. For client 1 this did not happen at Intersect, but is now happening through EPI. Client 1 explained that the outreach component was preferable. While attending Intersect, client 3 did not always have to meet the counsellor in the office, but they went out to different places to talk. Client 3 explained that this was better. Client 2 did not specify whether outreach would have been preferable but did express appreciation to the Intersect counsellor who accompanied her/him to different appointments. Incorporating an outreach component to service provision may be better for some clients. This already appears to be happening on a small scale within Intersect, but could be implemented on a formal and larger scale within the agency. EPI predominantly adopts an outreach approach to service provision. It is unclear from the present results whether AMH services provide an outreach component. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 123 The service users also expressed differing opinions regarding retelling their story to different counsellors. This indicates that it might be worthwhile for service providers to ask clients that have been transferred to their caseload if they want to retell their story or just work from the information provided in the case file. Limitations o f This Study In the methodology chapter I discussed the advantages and disadvantages o f being an outsider in this research project. During the data collection, a disadvantage o f being an outsider researcher became very apparent. I had not anticipated the length o f time it would take to recruit clients for interviews through AMH. Initially, I approached staff at CRU for help with this step of my project. While they were willing to assist me with this, they found it difficult to contact clients for me while trying to carry a heavy caseload and run an understaffed service. Had I been an insider researcher (i.e. working in AMH) confidentiality constraints would not have been an issue and I could have recruited the clients for interviews on my own. A further limitation o f this study is the fact that only three clients were interviewed. Due to the length o f time it was taking to recruit clients, I stopped data collection once I had three client interviews completed. The results o f this research would be stronger if I had input from more clients. Saturation has not been obtained as the three service users interviewed all had different comments to make about the transition process. Interviewing more service users would have been beneficial, but in this case, not feasible. I did not secure funding for this research; this may have helped with client recruitment. If payment was offered, clients may have been more open to participating in the study. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 124 It would also have been beneficial to interview or conduct a focus group with psychiatrists who are providing services to clients in CYMH and AMH to determine their perspective on the transition process and what suggestions they may have to improve the process. Suggestions for Future Research This exploratory research can act as a stepping stone to further research in the structure and delivery o f mental health services. If any o f the recommendations to improve the transition process in Prince George are implemented it would be worthwhile to re-evaluate their effectiveness in the future. Similar data collection methods to this study could be used or questionnaires could be distributed to participants. The administrator from AMH was able to provide me with some perspective on the transition process throughout the NHA. She believes that service providers collaborate more in the other health service delivery areas, and she hypothesises that this is due to the fact that the services are smaller and communication is easier. Although this was not the focus of my research, it is something that could be explored further. Furthermore, the transition process in Prince George could be compared with southern, more urban communities in BC. A quantitative approach to this research topic could be conducted. Exploring the numbers o f service users who, receive services at Intersect, complete treatment at Intersect, transition to AMH, and who continue at AMH, are some examples o f what could be investigated. Examining the statistics in detail may provide a clearer picture of how many clients are ‘falling through the cracks." Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 125 This research did not explore the experiences o f the transition process for youth in the care o f MCFD. Both administrators and service providers did talk about ‘wards o f the state’ and many believe that at present the transition process is not effective for those clients. Ascertaining the experience o f these clients would also be beneficial for improving the transition process. Furthermore, this research did not consider the transition process for Aboriginal youth. This would also be another worthwhile area o f further research. I did not talk to the service providers from Intersect, EPI, or AMH about the individual clients who were interviewed. It would be beneficial to take a case study approach to this research and determine what services individual clients were accessing, and how the transition process did or did not work for those clients. It would also allow for clarification o f any issues arising during the interview. Furthermore, it would be worthwhile conducting multiple interviews with the same client. I gave service users the option to meet again to review the transcript. I met with one client again and I gained much more information during this second meeting. During this second meeting, the client seemed much more at ease with me, the topic for discussion, and had more to say, likely because (s)he had had some time to think about the topic. I elected not to conduct a joint focus group with service providers from AMH, EPI, and Intersect. From preliminary discussions I knew that the service providers had not met together to discuss these issues, so I did not feel comfortable having a joint focus group. Now that the issue has been discussed openly with these different service providers, it may be worthwhile to conduct a joint focus group in the future, although it could be difficult to coordinate a convenient time for all parties. It may also be beneficial Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 126 to include service providers from some o f the other AMH teams, such as COAST and CASST, in this research. Conclusion There are some very clear outcomes o f this research study. Ultimately, the transition process from CYMH to AMH does work for some clients and yet does not for others. Clear areas o f improvement have been identified by the participants o f this study, primarily the need for better communication between the service providers o f the different agencies. Concrete suggestions were offered to improve the communication problem, including joint meetings between the service providers to discuss case files, joint ICMs with clients, and, shared electronic systems. A second outcome o f this research is recognising the need for joint service provision. This would be beneficial in ensuring that clients’ needs are being met and that they do not ‘fall through the cracks’ as they transition to AMH. This joint service happened for client 1 as (s)he moved to EPI and, unfortunately, did not happen for client 3. A third clear outcome o f this research is the universal agreement to blur or ‘grey’ the age criteria for transitioning clients. This is already in place in policy, as per the transitional protocol agreement; however it needs to be implemented in practice. There was universal agreement on this issue from the administrators and service providers and evidently it needs to be put into policy and practice. Throughout the data collection period o f this research I felt a sense o f hope coming from the participants and they were appreciative o f the fact that this topic was Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 127 receiving some attention. 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Wimpenny, P., & Gass, J. (2000). Interviewing in phenomenology and grounded theory: Is there a difference? Journal o f Advanced Nursing, 31, 1485-1492. Wyn, J. (1996). Youth in transition to adulthood in Australia: Review o f research and policy issues. In B. Galaway & J. Hudson (Eds), Youth in transition: Perspectives on Research and Policy (pp. 14-22). Toronto: Ontario. Thompson Educational Publishing. Zapf, M. K. (2002). Geography and Canadian social work practice. In F. Turner (Ed.), Social work practice: A Canadian perspective (2nd ed., pp. 69-83). Toronto: Prentice Hall. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 147 Appendix A Map o f Northern Health Authority3 ; nt-ift&Mt Ke&iil S w k t f&rtiws t&ahh kmc? Am Area :i§|§pm 3 Retrieved April 1, 2006 from http://www.northemhealth.ca/About/Ouick Facts/documents/7631NH RegionMap.pdf Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 148 Appendix B Interview/Focus Group Questions Possible Probe Questions for Unstructured Interviews with Service Users 1) Could you tell me what the experience o f moving from Intersect to CRU was like? 2) What age were you when you completed the move from Intersect to CRU? 3) Was there a plan in place for your move prior to turning nineteen? 4) What services did you access at Intersect? (e.g., psychiatric, counselling, group support). 5) What services do you now access at CRU? (e.g., psychiatric, counselling, group support). 6) What were the good things about moving to CRU? 7) What were the bad things about moving to CRU? 8) Now that you have moved to CRU, do you have any suggestions for improving the process? 9) Is there anything else you would like to tell me about your thoughts and feelings around the issue o f the moving from Intersect to CRU? Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 149 Possible Probe Questions for Semi-Structured Interviews with Administrators 1) Could you tell me, what are your observations o f the transition process from CYMH to AMH? 2) Some clients complete the transition process later than their nineteenth birthday. What are some o f the reasons for these exceptions? 3) What are the administrative components o f the transition process? W hat is your general impression o f these components? 4) In your opinion, what are the advantages and disadvantages o f this process? 5) What suggestions do you have that might improve the transition process? 6) Is there anything else you would like to tell me about your thoughts and feelings around the issue of the transition process? Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 150 Possible Probe Questions for Focus Groups with Service Providers 1) Could you tell me, what are your observations o f the transition process from CYMH to AMH? 2) When do you start planning the transition for your clients? 3) What factors influence your decision to begin planning the transition? 4) Some clients complete the transition process later than their nineteenth birthday. What are some o f the reasons for these exceptions? 5) What are the administrative components o f the transition process? W hat is your general impression o f these components? 6) In your opinion, what are the advantages and disadvantages o f this process? 7) What suggestions do you have that might improve the process? 8) Is there anything else you would like to tell me about your thoughts and feelings around the issue o f the transition process? Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 151 Written Question for Focus Group Participants If there is anything about the transition process that you would like to share that was not discussed during the focus group, please provide this below. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 152 Appendix C Information Sheets and Consent Forms From Pillar to Post: Transitioning from Child and Youth Mental Health Services to Adult Mental Health Services in Prince George, British Columbia Information Sheet for Service Users Dear Potential Interviewee, I am a student with the University o f Northern British Columbia, currently working to complete my Masters in Social W ork Degree program. Part o f the requirement to complete this program is for me to conduct a research study. I want to talk to you about your experience o f moving from Intersect to CRU. Purpose of Research: to explore the experiences o f the transition process for, 1) service users who recently moved to CRU, 2) counsellors from Intersect and CRU, and 3) administrators from CYMH and AMH. Goals of Research: 1) W hat has been your experience o f the moving from Intersect to CRU? 2) What are the advantages and disadvantages o f moving to CRU? 3) Are there any changes you would make to the moving process? If so, what would they be? 4) W hat are the similarities and differences in the experiences o f the three groups o f participants? You have been asked to talk to me about your experiences because you recently moved from Intersect to CRU. Your Commitment: before agreeing to talk to me, you should know: Y Your participation in this project is voluntary Y You can refuse to answer any question. Y You do not have to talk to me if you do not want to. Y Apart from the fact that you are putting your name forward for a research project there are no known risks associated with this research. Y There will be no costs for you, nor will you be paid for talking to me. Y You can stop the interview at anytime. Any information you have given will be destroyed and will not be used in the research. Y Your feedback will not be shared with any counsellors in a way that would identify you. Interviews: will be arranged at a time and location that works for you. I expect the interview will last about one hour. If you want, you can talk with your counsellor after the interview. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 153 Confidentiality: your name will not be written on any piece o f paper so no-one will know that you have talked to me. The information you give me will be combined with information from other clients who agree to talk to me. I will write a final report but your name will not appear in it. The interviews will be tape-recorded to make sure I do not miss any information. These tapes will be given to someone to type up, and then I will be the only person to have them. This person will sign a confidentiality agreement first. The tapes and written copies o f the interviews will be kept in a locked cabinet in the office o f m y home. The cabinet will be secured with a key and I will be the only one with access to it. The tapes and written copies will be destroyed (tapes erased and paper shredded) once I have successfully completed the project. If you want, you can look at a written copy o f the interview. You have one week to add, delete, or change any comments. If you want, I can go through the written copy o f the interview with you. If you want a copy o f the final report this can be emailed to you. If you have any questions or comments, please contact: Lynne Boutcher (Researcher), Social W ork graduate student at UNBC Phone: 250-960-6519 Email: boutcher@unbc.ca If you have any concerns about how this research is being conducted, please contact: Glen Schmidt (Thesis Supervisor), Social W ork faculty member at UNBC Phone: 250-960-6519 Email: schmidt@unbc.ca Or Office o f Research Phone: 250-960-5820 Email: reb@unbc.ca Yours, Lynne Boutcher MSW (candidate) Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 154 From Pillar to Post: Transitioning from Child and Youth Mental Health Services to Adult Mental Health Services in Prince George, British Columbia Information Sheet for Administrators Dear Potential Interviewee, I am a student with the University o f Northern British Columbia, currently working to complete my Masters in Social W ork Degree program. Part o f the requirement to complete this program is for me to conduct a research study. I have chosen to study the experiences o f the transition process from Child and Youth Mental Health (CYMH) to Adult Mental Health (AMH) in Prince George, British Columbia. Purpose of Research: to explore the experiences o f the transition process for, 1) service users who have recently been through the transition process, 2) service providers from CYMH and AMH, and 3) administrators from CYMH and AMH. Goals of Research: 1) What has been your experience o f the transition process from CYMH to AMH? 2) What are the advantages and disadvantages o f the transition process from CYMH to AMH? 3) Are there any changes you would make to the transition process from CYMH to AMH? If so, what would they be? 4) What are the similarities and differences in the experiences o f the three groups o f participants? You have been selected to participate in this study because o f your administrative position in either CYMH services or AMH services in Prince George. Your Commitment: before agreeing to talk to me, you should know: •S Your participation in this project is entirely voluntary S You can refuse to answer any question. •/ Apart from the fact that you are putting your name forward for a research project there are no known risks associated with this research. There will be no costs for you, nor will you be paid for your participation. ■S You have the right to withdraw consent and discontinue your participation at any point in the study. Any information you have given will be destroyed and will not be used in the research. Interviews: will be arranged at a time and location convenient for you. It is expected that the interview will last approximately one hour. Anonymity: the information collected from the interviews will be analysed by me. Only two people in the third group o f participants (administrators) will be Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 155 interviewed. Although your name will not be written on the final report, I cannot guarantee that your anonymity will be protected due to the limited numbers o f people who hold administrative positions in Prince George. When possible, your information will be combined with the information received by the other administrator who participates in the study. What is learned about your observations o f the transition process will be reported in a final research report, academic journals or at professional conferences, but without information that could identify you as an individual. Confidentiality: the interviews will be tape-recorded to ensure an accurate reflection of your responses. These tapes will be provided to a transcriber for transcription, and then remain in my possession only for the duration o f the research. The transcriber will sign a confidentiality agreement prior to beginning the transcription. The tapes and transcripts will be kept in a locked cabinet in the office o f my home. The cabinet will be secured with a key and I will be the only one with access to it. The tapes and written copies will be destroyed (tapes broken and paper shredded) once I have successfully completed the defence. A copy o f the transcript will be available for you to review. You may add, delete, or revise any comments in the transcript within one week o f receiving it. I will arrange a time to collect the transcript with any revisions. If you desire a copy o f the final report, this will be provided via email. If you have any questions or comments, please contact: Lynne Boutcher (Researcher), Social W ork graduate student at UNBC Phone: 250-960-6519 Email: boutcher@unbc.ca If you have any concerns about how this research is being conducted, please contact: Glen Schmidt (Thesis Supervisor), Social W ork faculty member at UNBC Phone: 250-960-6519 Email: schmidt@unbc.ca Or Office o f Research Phone: 250-960-5820 Email: reb@unbc.ca Yours, Lynne Boutcher MSW (candidate) Reproduced with permission o f the copyright owner. Further reproduction prohibited without permission. 156 From Pillar to Post: Transitioning from Child and Youth Mental Health Services to Adult Mental Health Services in Prince George, British Columbia Information Sheet for Intersect/CRU Service Providers Dear Potential Participant, I am a student with the University o f Northern British Columbia, currently working to complete my Masters in Social W ork Degree program. Part o f the requirement to complete this program is for me to conduct a research study. I have chosen to study the experiences o f the transition process from Child and Youth Mental Health (CYMH) to Adult Mental Health (AMH) in Prince George, British Columbia. Purpose of Research: to explore the experiences o f the transition process for, 1) service users who have recently been through the transition process, 2) service providers from CYMH and AMH, and 3) administrators from CYMH and AMH. Goals of Research: 1) W hat has been your experience o f the transition process from CYMH to AMH? 2) What are the advantages and disadvantages o f the transition process from CYMH to AMH? 3) Are there any changes you would make to the transition process from CYMH to AMH? If so, what would they be? 4) What are the similarities and differences in the experiences o f the three groups o f participants? You have been selected to participate in this study because o f the nature o f your employment in either CYMH or AMH. Your Commitment: before agreeing to talk to me, you should know: •S Your participation in this project is entirely voluntary ■f You can refuse to answer any question. S Apart from the fact that you are putting your name forward for a research project there are no known risks associated with this research. ■f There will be no costs for you, nor will you be paid for your participation. S You have the right to withdraw consent and discontinue your participation at any point in the study. Any information you have given will be destroyed and will not be used in the research. S Your feedback will not be shared with others in a way that would identify you. Focus Group: will be arranged at a time suitable for as many service providers who agree to participate within the agency. It is expected that the focus group will last approximately one hour. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 157 Confidentiality: your privacy and anonymity will be protected throughout this research project. The information collected from the focus group will be analysed by me. Your information will be combined with the information received by others who participate in this study. What is learned about your observations o f the transition process will be reported in a final research report, academic journals or at professional conferences, but without information that could identify you as an individual. Once your information is included in the study, it can no longer be identified as yours. During the focus group I will use a flip chart for taking notes o f the comments made in the discussion. No identifying information will be attached to these notes. You will also be provided with an opportunity at the end o f the discussion to offer written comments on the transition process. The notes from the focus group will be kept in a locked cabinet in the office o f my home. The cabinet will be secured with a key and I will be the only one with access to it. The notes from the focus group will be destroyed (shredded) once I have successfully completed the defence. If you desire a copy o f the final report, this will be provided via email. If you have any questions or comments, please contact: Lynne Boutcher (Researcher), Social W ork graduate student at UNBC Phone: 250-960-6519 Email: boutcher@,unbc.ca If you have any concerns about how this research is being conducted, please contact: Glen Schmidt (Thesis Supervisor), Social W ork faculty member at UNBC Phone: 250-960-6519 Email: schmidt@unbc.ca Or Office o f Research Phone: 250-960-5820 Email: reb@,unbc.ca Yours, Lynne Boutcher MSW (candidate) Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 158 From Pillar to Post: Transitioning from Child and Youth Mental Health Services to Adult Mental Health Services in Prince George, British Columbia Participant Consent Form (Service Users) I ____________________________________ understand that I have been asked to participate in a research project regarding the move from Intersect to CRU. Have you read the copy o f the information sheet? Do you understand that the interviews will be tape-recorded? Do you understand the benefits and risks involved in participating in this study? Have you had an opportunity to ask questions and discuss this project with the researcher? Do you understand that you are can refuse to participate or withdraw from the project at any time? This will not affect any care you are receiving from CRU. Has the issue o f confidentiality been explained to you? Do you understand who will have access to the information you provide? □ Yes □ Yes □ Yes □ No □ No □ No □ Yes □ No □ Yes □ No □ Yes □ Yes □ No □ No I agree to participate in this study. Participant Signature Date I believe that the person signing this form understands what is involved in the study and voluntarily agrees to participate. Researcher Signature Date Researcher Copy Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 159 From Pillar to Post: Transitioning from Child and Youth Mental Health Services to Adult Mental Health Services in Prince George, British Columbia Participant Consent Form (Service Users) I ____________________________________ understand that I have been asked to participate in a research project regarding the move from Intersect to CRU. Have you read the copy o f the information sheet? Do you understand that the interviews will be tape-recorded? Do you understand the benefits and risks involved in participating in this study? Have you had an opportunity to ask questions and discuss this project with the researcher? Do you understand that you are can refuse to participate or withdraw from the project at any time? This will not affect any care you are receiving from CRU. Has the issue o f confidentiality been explained to you? Do you understand who will have access to the information you provide? □ Yes □ Yes □ Yes □ No □ No □ No □ Yes □ No □ Yes □ No □ Yes □ Yes □ No □ No I agree to participate in this study. Participant Signature Date I believe that the person signing this form understands what is involved in the study and voluntarily agrees to participate. Researcher Signature Date Participant Copy Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 160 From Pillar to Post: Transitioning from Child and Youth Mental Health Services to Adult Mental Health Services in Prince George, British Columbia Participant Consent Form (Service Providers and Administrators) I ____________________________________ understand that I have been asked to participate in a research project regarding the transition process from Child and Youth Mental Health to Adult Mental Health in Prince George, British Columbia. Have you read the copy o f the information sheet? Do you understand that the interviews will be tape-recorded? Do you understand the benefits and risks involved in participating in this study? Have you had an opportunity to ask questions and discuss this project with the researcher? Do you understand that you are can refuse to participate or withdraw from the project at any time? Has the issue o f confidentiality been explained to you? Do you understand who will have access to the information you provide? □ Yes □ Yes □ Yes □ No □ No □ No □ Yes □ No □ Yes □ No □ Yes □ Yes □ No □ No I agree to participate in this study. Participant Signature Date I believe that the person signing this form understands what is involved in the study and voluntarily agrees to participate. Researcher Signature Date Researcher Copy Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 161 From Pillar to Post: Transitioning from Child and Youth Mental Health Services to Adult Mental Health Services in Prince George, British Columbia Participant Consent Form (Service Providers and Administrators) I ____________________________________ understand that I have been asked to participate in a research project regarding the transition process from Child and Youth Mental Health to Adult Mental Health in Prince George, British Columbia. Have you read the copy o f the information sheet? Do you understand that the interviews will be tape-recorded? Do you understand the benefits and risks involved in participating in this study? Have you had an opportunity to ask questions and discuss this project with the researcher? Do you understand that you are can refuse to participate or withdraw from the project at any time? Has the issue o f confidentiality been explained to you? Do you understand who will have access to the information you provide? □ Yes □ Yes □ Yes □ No □ No □ No □ Yes □ No □ Yes □ No □ Yes □ Yes □ No □ No I agree to participate in this study. Participant Signature Date I believe that the person signing this form understands what is involved in the study and voluntarily agrees to participate. Researcher Signature Date Participant Copy Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 162 From Pillar to Post: Transitioning from Child and Youth Mental Health Services to Adult Mental Health Services in Prince George, British Columbia Confidentiality Agreement (Transcriber Services) I , ____________________________________________________ affirm that I will not disclose or make known any matter or thing related to the participants that comes to my knowledge while providing the transcripts for this research project. I will also remove any information pertaining to this project from my hard drive upon delivery o f the transcripts to the researcher. Transcriber Date Researcher Date Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 163 Appendix D UNBC Ethics Approval UNIVERSITYOFNORTHERNBRITISHCOLUMBIA RESEARCH ETHICS BOARD MEMORANDUM T o: CC: Lynne B outcher Glen Schmidt From: Henry Harder, Chair Research Ethics Board Date: June 1,2006 Re: E2006.0515.059 MSW Thesis: From Pillar to Post: Transitioning from Child and Youth Mental Health Services to Adult Mental Health Services in Prince George, BC Thank you for submitting the above-noted research proposal and requested amendments to the Research Ethics Board. Your proposal has been approved. We are pleased to issue approval for the above named study for a period o f 12 months from the date o f this letter. Continuation beyond that date will require further review and renewal o f REB approval. Any changes or amendments to the protocol or consent form must be approved by the Research Ethics Board. Good luck with your research. Sincerely, Henry Harder Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.