Youth Psychosis & Family Involvement: Narratives of a Working Alliance By David O'Brien B.A. , University of Victoria, 1981 B.S.W., University of Victoria, 1988 THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SOCIAL WORK IN THE F A C U L T Y OF GRADUATE STUDIES (School of Social Work and Family Studie|) We accept this thesis as confdrmingto the required standard The University of British Columbia August, 2004 © David O'Brien, 2004 FACULTY OF GRADUATE STUDIES S^*'' THE UNIVERSITY OF BRITISH COLUMBIA Library Authorization In presenting this thesis in partial fulfillment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. *j>ftN/\>> i A A - y J g : g y l £ g ( g > J Name of Author (please print) Date (dd/mm/yyyy) ™ e 0 f T h e S i S : ^ J T > I fiWQfcil* A ^ P A M . L ^ r . U / ^ ^ l r Degree: Y e a r ; Department of The University of British Columbia Vancouver, BC Canada grad.ubc.ca/forms/?formlD=THS page 1 of 1 last updated: 20-Jul-04 11 A B S T R A C T Youth psychosis often represents a tumultuous disruption to individual and family life. Researchers and family advocates have recommended mental health service providers work with family caregivers of the seriously mentally i l l as "partners" and "allies" in the recovery effort. Little research has examined the experiences and process interactions of these potential partners as they seek to form a working alliance in the context of treatment planning. A qualitative study conducted as a narrative phenomenology was undertaken to explore the experiences related to family involvement in an early psychosis intervention program of a family caregiver, a youth recovering from psychosis, and his primary social worker. A core narrative representing the illness and recovery journey and their perspectives on family involvement was extracted from a joint interview with all three participants. In individual follow-up interviews participants further elaborated on themes related to the effects of illness on personal agency, autonomy and their relationships. Results also addressed how participants constructed "recovery" as well as how the family member participated as an advocate and established a collaborative relationship with the social worker. TABLE OF CONTENTS ABSTRACT i i TABLE OF CONTENTS iii LIST OF FIGURES v ACKNOWLEDGMENTS vi CHAPTER I - INTRODUCTION 1 The challenge of collaboration 4 CHAPTER II - CONCEPTUAL CONTEXT 6 Mental health, the family and dominant discourse 6 The advent of early psychosis intervention 11 Research and family practice issues 13 A role for qualitative research in family practice 14 CHAPTER III - METHODOLOGY 17 A narrative phenomenological approach ..17 Contextual considerations 20 The interviews 27 CHAPTER IV - RESULTS 32 Narrative summary/joint interview - orientation & complicating events 32 Ben and Kate - the illness onset 32 Entry into hospital and the long haul of recovery 37 Evaluation 45 The individual interviews 45 Ben - individual evaluation 45 Onset phase 46 Acute phase 48 Resolution/coda 50 Kate - individual evaluation 52 Resolution/Coda 59 John - individual evaluation 61 Resolution/Coda 65 A triadic level interpretation of the working alliance 67 Metaphor and the ground of reality 67 Narrative constructions of agency 69 CHAPTER V - DISCUSSION 75 Ben's narrative authority and the triadic level of analysis 75 Open accessibility and informality 77 Conversation with a purpose 78 CHAPTER VI - IMPLICATIONS FOR PRACTICE, POLICY & FURTHER RESEARCH 81 Narratives and collaborative practice.. 81 Transparency 83 Family practice and organizational context 84 Limitations and further research 86 Conclusion 88 References 89 Appendix A Appendix B Appendix C V LIST OF FIGURES Figure 1. Summary of main themes - youth (Ben) ...46 Figure 2. Summary of main themes - family member (Kate) 53 Figure 3. Summary of main themes - social worker (John) 62 A C K N O W L E D G M E N T S I would like to express my gratitude to faculty members who participated on my thesis committee and provided many forms of support, both practical and philosophical. Specifically, thanks to Dr. Grant Charles for guidance and the art of making things happen, Dr. Pilar Riano for insight and reflection all along the journey, Dr. Paule McNicoll for her passion for social work, and Dr. Sheila Marshall for dialogue and inspiration. I would also like to express my appreciation to the research participants who each volunteered their time and invaluable perspective for the benefit of others. And to my family, Sharlene, Mahaila and Jasmine, thanks for the love and support to see it all through. 1 "I have come back, and still the sea keeps sending me strange foam. It does not get used to the way I see. The sand does not recognize me." Strangers on the Shore Pablo Neruda C H A P T E R I - I N T R O D U C T I O N Serious mental illness can entail complex interactions over prolonged periods of time between youth with vulnerabilities, their family members and an array of service providers. The onset of psychosis typically occurs from late adolescence to early adulthood, and represents a significant interruption to individual functioning and development (Davidson, 2003). Families, particularly in an age where hospital stays are kept to a minimum, frequently play an essential role in their ongoing care: overall, more than 60% of individuals hospitalized for a first episode of serious mental illness return to the care of relatives, and under supportive conditions their participation can dramatically assist recovery efforts and reduce relapse rates (Barrowclough & Wykes, 2003). Family members, mainly parents, face disrupted expectations, and what has been deemed in the literature as an increased "burden of care" (Fadden, Kuipers, & Bebbington, 1987). Loss of hope and a sense of control over life circumstances are understandable reactions to living with an individual vulnerable to psychosis (Atkinson & Coia, 1995). Although the nature and severity of illness varies considerably between individuals, it typically involves significant elements of the following: hallucinations, delusions and major cognitive impairment, accompanied by problems such as bizarre behaviour, impaired judgement, decreased motivation, depression, social withdrawal and diminished self-care (Davidson, 2003). Psychosis is most commonly a feature of schizophrenia, but 2 it can also be associated with mood disorders, substance abuse and some organic physical disorders (Ehman & Hansen, 2002). This often leads to increased dependency on family members at a phase of life when just the opposite is anticipated. Consequently, primary family caregivers are prone to subjective stress effects, such as anxiety, guilt, frustration, grief and depression. For youth it can lead to unanticipated disruption in multiple domains of functioning and development; consequently, over two-thirds of family caregivers identify significant long-term effects related to stress and subjective burden (Barrowclough & Wykes, 2003). Stern, Doolan, Staples, Szmukler and Eisler (1999) have described the effect of coping with a relative's psychotic episodes as a " . . . frightening disruption that forces carers to face fundamental existential, moral, and psychological issues because they call into question the continuity of lives and life-projects" (p. 353). Historically, some researchers and consumer advocacy groups have concluded that formal mental health services have not adequately responded to needs expressed by family members (Hatfield, 1987; Bernheim, 1990; Knudson & Coyle, 2002); or that family practice approaches in this domain are underutilized (Barrowclough & Wykes, 2003). In response, mental health policy and practice recommendations have increasingly highlighted involving parents on a collaborative basis in treatment for youth vulnerable to psychosis, ideally as early in the identification and treatment process as possible (Gleeson, Jackson, Stavely, & Burnett, 1999; Linszen & Birchwood, 2000; Ehman & Hanson, 2002). Many factors are at work in this domain, and much needs to be learned about how family members site themselves in this often precarious landscape. To research the question of what comprises an effective working alliance with family members necessitates understanding more • 3 deeply how they experience interactions with clinicians and what meanings they make of such encounters. How do they make sense of their contacts with mental health professionals - typically, social workers, psychiatric nurses and psychiatrists - and specifically what do they recognize as effective engagement in an often tumultuous process? The process of psychiatric assessment and intervention can represent a form of intrusion into the most private aspects of personal life, where professionals with institutional sanction make conclusions about the links between external behaviours and the workings of an individual's psychological and biological interior in what is still, arguably, a crude science. This frequently constellates inevitable tensions between the collective and the individual, characterized by debate and ambiguities about where concepts like 'treatment' meld into social control (Whitaker, 2002). Family members are inevitably situated amongst these tensions and though by no means a homogenous group, they face many common challenges when they are involved in caring for relatives and dealing with various mental health professionals. A significant aspect of this inquiry was to investigate how a family member experiences contact with a mental health social worker, a member of a profession with an intrinsic orientation to systemic and family approaches, but is nonetheless subject to the restricting influences of an institutional context. I was also interested to learn how the youth as patient/client, ultimately at the centre of the "treatment," viewed their family member's involvement and, finally, how the social worker balanced his/her respective interests with his/her own construction of recovery or rehabilitation. 4 This inquiry explored these multiple perspectives on the role of family involvement in the context of the illness and recovery experience. The perspectives of the participants in the clinical triad - youth, family member and primary social worker -were conjointly investigated through narrative phenomenology. Van Manen describes a phenomenology as " . . . a means for exploring and gathering experiential narrative material that may serve as a resource for developing a richer and deeper understanding of a human phenomenon" (1990, p. 66). Since the focus of the investigation revolves around the working relationships of the participants, the research design included an opportunity for a joint interview as well as individual follow-up interviews. It was my intention to explore the participants' experiences in a relational context for a more complex understanding of what Sluzki (1992) has defined as an "ecology of narratives." Joint and individual interviews allowed for an analysis of their respective narrative voices in the co-construction of the illness and recovery account. The challenge of collaboration Working with youth vulnerable to psychosis and their families is a particularly challenging aspect of mental health service, where I have worked for over twelve years, in addition to counselling work in other domains. M y practice has been diverse, but few areas of practice have matched the complexity and ethical tension I have found inherent in providing services to those affected by psychosis. I have encountered some elements of paradox along the way. Developmentally, individuals in their late teens and twenties are understandably preoccupied with cultivating new experiences, roles and strengths in the world (Santrock, 1986). The institutional world of mental health often runs counter to this current, with its intimidating focus on revealing personal vulnerabilities to adult 5 professionals, and the prospect of stigma and shame related to diagnostic labels and even the fact of attending a mental health service. The onset of psychosis usually so affects individuals that their ability to negotiate these roles is seriously compromised and hospitalization is a common outcome, which in itself exacts a cost to selfhood and has significant repercussions in the family. Family members understandably express grief, anxiety, confusion and frustration when they are seeking answers to a challenge that usually eludes simple and immediate solutions. It is no small thing to construct hopeful direction and a working collaboration in such a stressed context. A collaboration or working alliance implies formation of common purpose and goals. Those involved in recovery efforts are challenged to achieve this in a complex context subject to disparities in power and diversity of opinion about the nature of mental illness and what influences healing. I became curious to research the perspectives of those who had negotiated a recovery journey together that involved significant family participation. What would the experiences of a family member, youth and professional caregiver reflect about the processes involved in collaboration over such a journey? I pursued this question through the participants' stories. Riessman (1993) observes that individuals " . . . narrativize particular experiences in their lives, often where there has been a breach between ideal and real, self and society" (p.3). We do not construct our stories in a vacuum. Writing about families and therapeutic encounters, Sluzki notes that "(e)ach given story is, in turn, embedded in a complex network of reciprocally influencing narratives" (1992, p. 218). 6 CHAPTER II - CONCEPTUAL CONTEXT Mental health, the family and dominant discourse Professional response to families involved in the care of a relative vulnerable to serious mental illness has been subject to a long evolving discourse (Terkelson, 1990). The formal legitimacy of an active partnership role for family caregivers is a relatively recent development conceptually, and subject to considerable variability in practice and interpretation in the field. Terkelson (1990) has noted that through each era in the development of mental health treatment approaches, the dominant professional discourse has held major implications for the role and experience of family members of relatives with severe and persistent mental illness. In the nineteenth and early twentieth century, when the asylum movement was at its height, family members were subject to the view that they had failed in some fashion to protect their i l l relative from the stresses and strains of society, resulting in their need for confinement and rehabilitation (Whitaker, 2002). Institutionalization tended to ignore the role of family connections: families either struggled on their own without much help or surrendered the care of their i l l member to the long-term exile of the asylum. Contact was usually minimized and discouraged, and the family had little part to play in the array of "treatments" devised. In the first half of the twentieth century poorly defined biological explanations vied with psychoanalytic theories in defining the cause of psychosis. Treatment was mainly an individual matter. Freida Fromm-Reichman had worked devotedly in the area of mental health rehabilitation, yet is mainly remembered for her coining of the term "schizophrenogenic mother", which was taken up by others keen to determine the 7 specific nature of parent-child interaction that might be responsible for pathology (Falloon, Boyd, & McGi l l , 1984). The psychoanalytic tradition had already set up suspicions about the role of "cold," "rejecting" or "sadistic" mothers in the aetiology of serious mental illness (Terkelson, 1990). The exclusion of family members from the care of the seriously mentally i l l shifted dramatically subsequent to the introduction of neuroleptic medications in the early 1950s and to a vigorous move towards deinstitutionalization (Terkelson, 1990). Suddenly relatives were expected to take on the burden of care single-handedly with often sketchy services in the community. During the same period proponents of family systems theory and models of therapy pursued an intensive focus on the possible role all family members might play in the aetiology of serious mental illness. Clinical observations of families with a member vulnerable to schizophrenia led to formulation of a host of conceptualizations about family pathology related to patterns of triangulation, incongruent communication and poor subsystem boundaries (Burbach, 1996). Although these theories were ultimately heavily critiqued in terms of accounting for the aetiology of schizophrenia, research continued to suggest that families with a member vulnerable to psychosis are subject to a higher incidence of communication problems, although not significantly higher than families facing any other type of serious, chronic disorder. These involve "a high prevalence of marital discord, role distortions, confusing verbal and nonverbal communications, and difficulties attending closely to important issues" (Falloon et al., 1984, p. 16). The possibility that these dynamics were in part an outcome of coping with the challenges presented by chronic, severe illness was not the subject of investigation. Whatever the model - structural, strategic, systemic or 8 Bowenian - a common premise was that the symptoms, i.e., mentally disturbed behaviour, were being maintained by the system as a "solution" or means to avoid a deeper, more entrenched problem, such as fear of marital dissolution. Bateson and colleagues at the Mental Research Institute applied general systems and cybernetic theories to patterns of family interaction associated with schizophrenia and established two theories which contributed much to the early foundations of family therapy. They articulated the concept of "family homeostasis," the tendency for the family to sustain balance or a steady state in response to forces of change (Falloon et al., 1984). They also proposed a double-bind theory, defined as a pattern of mutually contradictory instructions conveyed to children that must be fulfilled, with an implicit injunction against commenting on the contradiction. This was seen to set up an irresolvable conflict for the children that led to their "distorting and denying important aspects of themselves" (Burbach, 1996, p. 114), ultimately contributing to schizophrenic behaviour. Although Bateson and colleagues focused on the transaction as pathological, that is, sustained by all parties involved, it implied a considerable degree of parental blame. Subsequent commentators have observed similar patterns of incongruent communication patterns sometimes engendered by professionals: "If one accepts that double-bind interactions can create distorted, even irrational, communication, then many 'therapeutic' situations can be seen as pathogenic: For instance, covert blame of the family by professionals is often combined with overt attempts to help them, while the contradiction is denied" (Lefley, 1990, p. 135, citing McFarlane & Beels, 1983). Although these formulations of clinical research led to tremendous advancement in the family therapy movement, the implications of blame to parents of offspring with 9 serious mental illness tended to compound the already formidable and often under-acknowledged stress associated with caregiving. As such, the power of a dominant cultural discourse can wield considerable influence on how individuals make meaning of personal events. Putting family dynamics under the microscope took its toll on professional/family relationships, and surveys began to bear out that family members felt judged or blamed (Hatfield, 1987; Bernheim, 1990), thus alienating them from services. Although researchers had subjected families to considerable theoretical scrutiny, family member perceptions and views about service providers took decades to begin to be recognized. Family advocacy groups began to form through the 1970s and 80s. Concerns were increasingly recognized about pathologizing attitudes towards family members by mental health professionals (Anderson, Reiss, & Hogarty 1986; McFarlane, 1983; Hatfield & Lefley, 1987). Johnson (1990) observed that ". . . by viewing families as malevolent, or incompetent, professionals have distanced themselves from the families" (p. 54). It appears that dominant discourses governing views on families and serious mental illness have largely centred on families' pathological contributions, with some subsequent shift to some preliminary examination of family burden of care, but as Lefley (1987) observes: "Almost nowhere, however, do we find any substantial evidence of research on adaptive strategies used by families that reflect strength in the face of adversity" (p. 322). The emergence of the stress-vulnerability model (Zubin & Spring, 1977) applied to schizophrenia led to a shift back to genetic and biological factors in the aetiology, combined with the role of environmental stressors in determining the degree and timing 10 of how symptoms of psychosis manifest. Through the early 1980s the burden of care sustained by family members with a relative vulnerable to psychosis received greater acknowledgement within the field (Anderson, Reiss, & Hogarty, 1986; Hatfield & Lefley, 1987). Consideration shifted to an appreciation of the strains in family dynamics as being understandably correlated with the demands and frustrations inherent in caring for individuals whose sense of reality, coping and social behaviours are dramatically affected by psychotic illness. The development of specialized family programs through the 1980s was heavily influenced by research related to the theory of expressed emotion (Terkelson, 1990). It was developed through observations that the relapse rate of individuals with schizophrenia was higher when they returned home after hospitalization to certain types of family contexts. Much of this research characterized family responses in three dimensions as being highly correlated with increased relapse: emotional over-involvement, critical comments and hostility (Leff & Vaughn, 1985). Families demonstrating these behaviours were rated as high in expressed emotion (EE) and those that exhibited calmer, more tolerant and accepting behaviours were viewed as low EE. The professional discourse shifted away from a causal focus to viewing families as playing a significant role in affecting the course of illness. Although expressed emotion research has presented a compelling line of inquiry, Terkelson (1990) notes that it has tended to promote a professional focus whereby " . . . family members are relegated to adjunctive roles or regarded as barriers to recovery. Those who reveal their own suffering and injury too extensively are likely to be seen as unduly self- absorbed" (p. 129). He also observes that family members' experiences of 11 mental illness are largely overlooked and poorly understood: "The research in EE takes us outward [author's emphasis] from the conduct of parents to the patient's clinical status, and not inward to the parent's experience of illness" (p. 129). Narrative perspectives can direct practitioners to identify client constructions and meanings related to serious mental illness and family relationships, and assist them in shaping their stories towards more liberating directions. The advent of early psychosis intervention Although they frequently assume the main burden of care, and become intimately involved in coping through all the vicissitudes that psychosis can entail, families have often been underestimated for their own needs and expertise. The currently evolving model of early intervention in psychosis encourages greater recognition of the stress involved in coping with the onset of illness, and places more emphasis on early detection, and assessing and encouraging family competency (Gleeson et al., 1999). Representing a discourse that is more preventative and inclusive, the clinical stance in the early intervention approach seems to be a bridge between earlier educational approaches suggestive of a guiding 'expert' role and the assumption of a partnership with family members, which family and consumer movements have steadily promoted (Bernheim, 1990). From my perspective working in the field of community mental health I believe these qualities of relationship are fundamental to helpful engagement with families, which has often eluded mental health professionals despite the array of expert models developed over the past two decades. Although family intervention approaches have been steadily evolving, it has been observed that"... the implementation of family work 12 in routine mental health services has been at best patchy" (Barrowclough & Wykes, 2003, p. 131). Collaborative family practice necessitates reflexivity about the professional assumptions that underpin our understanding of therapeutic intervention: . . . behaviour is understood to be embedded within a range of social formations. These arrangements are symbolic - linguistic - in nature and embody norms that are engendered and supported through ongoing discourse. Therefore, conceptions of health and illness reflect the intricacies of specific social relationships and should not be presumed to be universal. (Murphy, Pardeck, & Callaghan, 1999:160) Despite consistent evidence supporting the critical role of family members in the recovery of youth vulnerable to psychosis, ". . . there is no evidence that family approaches to schizophrenia are being offered on a global scale in mental health services" (Fadden, 1997, p. 600). Early psychosis intervention programs, which characteristically emphasize close family involvement where possible, have begun to make an impact in this area. Gleeson et al. (1999) outline a set of general principles for working with families with an early psychosis member that recognize the following: • Family work needs to be adaptable and flexible in approach because of the phase nature of the patient's illness; • Families will have a range of different feelings, worries and questions; • Families need time and an opportunity to deal with the crisis and ensuing stressors; • The explanations that families have for what has happened to them need to be heard and understood; • Families need a framework for understanding; • Families also need recovery time and may go through particular stages, (p. 400) 13 These principles reflect a greater recognition that the unique experiences and perspectives held by families need to be factored into the therapeutic response; otherwise, practitioners are at risk of alienating families from formal services. Research and family practice issues Despite the plethora of research and models in the field, I agree with Hailwood and Hughes' (1996) assessment that there are a decided lack of "process" studies examining helpful events between clinicians and family members that can more specifically illuminate what elements of interaction contribute to qualities of partnership between mental health clinicians and family members. If services are not reaching them adequately - services are, after all, people attempting to offer a form of relating within a social context — there is a need to explore more closely the experience of participants in that relational context. There is very little qualitative research in the area of psychosis and schizophrenia (Davidson, 2003). The aim of this inquiry is to elicit the experiences of a family member and social worker, as well as the youth in recovery, related to their working relationships organized around an illness and recovery process. My own practice as a case manager in a rural community mental health centre has brought home the importance of forming a therapeutic system in the wake of hospitalization typically engendered by an episode of psychosis. Families can provide emotional and material support, as well as close sources of observation and knowledge about the strengths and vulnerabilities of the youth. They are also, understandably, in a major state of distress in the midst of a radical life adjustment. I have observed potential family roles subject to a range of tensions focused around the following issues: • How affected youth and their various family members respectively come to understand the illness experience and associated difficulties may vary 14 tremendously, and is subject to an evolving process; clinicians must be prepared for the possibility of different views within the family and levels of confusion, inadequate information and questioning the psychiatric system; • Psychosis and associated crisis will test the delicate balance between family caregiving efforts and a youth's need for autonomy and self-determination; • Normative developmental expectations will often be challenged by the effect of illness; • Families vary widely in cohesiveness, and youth differ in their attitudes towards participation of family members in their recovery efforts; • Youth and families vary in their experience with and disposition towards mental health professionals. Clinicians seeking to join with youth and their family members must be prepared to appreciate and respond to these family tensions. They, in turn, will be influenced by organizational factors, such as size of caseload, degree that the agency leadership values family involvement, and training available for family practice. Also, the case management model of service delivery may emphasize the worker's role as a broker arranging for referral to other services, which may mitigate, along with variability in personal competencies, how regularly she/he can provide direct therapy of any kind. A role for qualitative research in family practice Hughes and Hailwood (1996) indicate a need for service providers to gain a more in-depth understanding of the life-world of family caregivers. They cite barriers to engagement, including family members' ambivalence about professional involvement, seeing the crisis as a "one-off event unlikely to reoccur, professionals and/or family members underrating the importance of family involvement, and professionals inviting only token or inconsistent family contact. They note that practitioners cannot over-rely on standard education packages, that families are extremely diverse in their needs and 15 characteristics: "We do not believe it is possible to provide such a service using 'off the shelf packages of care. Rather, it is necessary to provide interventions which are tailored to the individual needs of sufferers and their families and which take into account the family's history and construction of the problem" (p. 155). In their description of family-oriented community mental health practice, Procter and Pieczora (1994) similarly describe a dedication to working constructively with how the family makes meaning of life events. Clinicians conduct assessments through " . . . gaining a detailed understanding of the constructions held by clients and those immediately surrounding them. This involves a careful 'unpacking' of the words and metaphors that they use [. . . ] Fundamental to the process of therapeutic change is the revision of construing patterns within the family" (p. 139). Writing about family intervention (FI) approaches, Hughes and Hailwood (1996) point out the lack of research examining "the most effective specific ingredients of the FI packages in use" (p. 147). They observe that there "are not 'process' studies looking at helpful events (impacts) in FI therapy sessions" (p. 147). In a qualitative study Stern et al. (1999) used a narrative perspective to research how family members caring for a relative with serious mental illness understood the nature of problems accompanying the disorder and ultimately turned it into a meaningful event. They depict family members' search for coherence, which is defined as " . . . the capacity to connect events and to take various simultaneous perspectives [.. . ] It is the possibility of making sense of difficult life experiences and integrating positive and negative aspects that is necessary" (p. 354). Acknowledging and naming the tensions in their family life brought on by the disruption of chronic illness seems to have provided a 16 type of bridge or working perspective that allowed eventual movement towards greater integration of difficult experiences. Stories of some family members revealed their abilities oriented around "befriending the incomprehensible" through " . . . placing the bizarre within a continuum of understandable human responses" (p. 366). The authors encourage mental health practitioners to consult family members and assist their efforts to shape meaning of the illness experience so as to optimize their creative coping and problem-solving. Sluzki (1992) outlines the importance of "fit" in the interplay between narratives in family/professional relationships: "In fact, the specific direction of the transformation of narratives is contingent upon the evolving fit between the family's dominant and alternative stories and style, and the therapist's own preferred models, idiosyncrasies, and style" (p. 228). This study explores how participants' narratives reflect their understandings about the development of their working alliance. 17 CHAPTER III - METHODOLOGY A narrative phenomenological approach Narrative theory provides a way to examine how family members make meaning of illness and its impact on relationships and the course of their lives. Seidman (1991) identifies the root of the word 'story' as the Greek work his tor, meaning one who is "wise" and "learned." Storytelling as a meaning-making experience is a "process of selecting constitutive details of experience, reflecting on them, giving them order, and thereby making sense of them" (Polkinghorne, 1988, p. 1). Serious mental illness confronts youth and their family members with new and striking developments in their life course, and the need to cope and adapt. Entry into the psychiatric system of care represents a pivotal turn in that challenge. Stories have the capacity to reflect the important temporal, dynamic qualities of such experiences, as Polkinghorne (1988) describes: We are in the middle of our stories and cannot be sure how they will end; we are constantly having to revise the plot as new events are added to our lives. Self, then, is not a static thing or a substance, but a configuring of personal events into an historical unity which includes not only what one has been but also anticipations of what one will be. (p. 150) Narrative theory has evolved as a stream of post-structuralism, which "shift(s) the focus from a notion of pre-existing reality and the independent subject to a focus on language" (O'Connor, 2001, p. 150). Like many forms of postmodernism which evolved out of diverse cultural forms of expression such as architecture and art, narrative theory borrows heavily from literary critique and examines social interactions as dramatized stories which have meaningful text. Language is seen to be the basis by which we construct meanings and explain reality, and narratives are the stories we tell to account 18 for and justify our actions. Abels and Abels (2001) argue that narratives have a great determination in how we translate our perceptions into meaning and behaviour: "Shaped in part by culture as well as contextual life experiences, people think, feel, and behave within the framework of their continuously developing life narrative. Who you are, what you think, how you learn, how you relate, what you feel, and what you do, are the ingredients forming the landscape of your life narrative" (pp. 1-2). For the purpose of this study I have chosen to apply a narrative structural analysis, which addresses core elements of narrative, such as the context, main events, their temporal ordering and meanings identified by the main actors (Labov, 1972b). The many and varied narratives that represent how individuals organize their experience have been referred to by Bruner (1990) as the "landscape of the person's life." In contrast to some schools of cognitive theory, which examine meaning-making as a primarily intrapsychic process, narrative theory addresses the influence of culture and social relations on the development of personal and family narratives. It does not presuppose that the formation of personal meaning is limited to an individual internal process. Bruner emphasizes that meaning is "public and shared" (author's emphasis): "Our culturally adapted way of life depends upon shared meanings and shared concepts and depends as well upon shared modes of discourse for negotiating differences in meaning and interpretation" (p. 13). This is particularly evident in the field of mental health, where individuals and families are subject to the diagnostic pronouncements of health professionals who, under the guise of science, have authority to define and explain what comprises mental norms and deviancy. White and Epston (1990), drawing on Foucault, present this as the 19 "practices of power" through which the modern "subject" is constituted, and that it is "through these practices that persons shape their lives according to dominant specifications for being" (p. 136). Thus, professional accounts about individuals and families hold a privileged view that influences how clients construct their personal problems, as well as their sense of identity: "The structuring of a narrative requires recourse to a selective process in which we prune, from our experience, those events that do not fit with the dominant evolving stories that we and others have about us" (White & Epston, 1990, pp. 12-13). A particular feature of this study is the attempt to ascertain the experience and meaning of establishing family involvement with formal services from the separate perspectives of the central participants. The clinical triangle of patient, therapist and family member is mirrored by the research triangulation investigating their individual perspectives and how they each construct this experience. There is, at once, the question of what is unique to their individual perspectives, and the additional question central to this inquiry as to how they jointly construct a shared narrative to turn their relationships into a purposeful collaboration. Mattingly and Garro (2000) argue that we can understand illness and healing by " . . . drawing upon narrative to emphasize how events and experiences are constructed through the complex interactions of agents who occupy different social positions, with differential access to power, and different points of view" (p. 17). It is after all an intensely personal journey in the life of a family that brings them unexpectedly to the door of a mental health professional. A phenomenological approach seeks to elicit the meanings and significance individuals assign to experience. The focus 20 of phenomenology, according to Van Manen (1990), is "some abiding concern of lived experience [... and] consists of reflectively bringing into nearness that which tends to be obscure, that which tends to evade the intelligibility of our natural attitude of everyday life" (pp. 31-32). The purpose is " . . . a thoughtful, reflective grasping of what it is that renders this or that particular experience its special significance" (p. 32). The personal images and expectations, flavoured by culture and history, associated with 'psychiatric unit', 'psychiatrist', 'social worker', 'treatment', etc., as well as strengths, resources and vulnerabilities, are individual to the unique perspective of the families that begin this journey. Schutz and Luckman (1973) describe this individual perspective, based on one's "scheme of interpretation" of past, present and anticipated experiences, as the "life world." Clinicians are challenged to appreciate the life world of family members adjusting to the reality of a mentally i l l relative. A working alliance implies a collaborative partnership towards common goals. To arrive at goals together first presumes the ability on the clinician's part to appreciate the perspectives and meanings clients make of their worlds. Much regarding the outcome ultimately depends on the subjective responses of family members themselves to this process. Not a great deal is presently understood about peoples' experience in this context. Contextual considerations Research was conducted within the Early Psychosis Intervention (EPI) Program, which is part of the University of British Columbia Hospital site, recently integrated within the Vancouver Hospital network. This is the field practice setting I had chosen to participate in as part of my graduate program in social work during the fall and winter terms of 2003-04. The EPI Program, comprising a host of inpatient, outpatient and 21 community support services to the Vancouver population, was established in the early 1990s. It currently supports a six bed inpatient unit, individual and group outpatient services through the Schizophrenia Rehabilitation Day Program, family education support groups, and a separately sited community outreach service. Services are staffed by a multi-disciplinary team within the hospital and a complementary team at the outreach office. The U B C site team includes a social worker (my field practice supervisor), psychiatric nurse, two occupational therapists and a psychiatrist. Since they are part of a teaching hospital, student trainees from a variety of disciplines are regularly involved in service provision. I had chosen the U B C EPI Program as a setting to conduct my field practice and research for similar reasons. Coming from a rural community mental health centre - in fact, my undergraduate social work training had specifically prepared me to practice as a "rural generalist" -1 wanted to see how a specialized service with a larger population base approached family practice. Overall, early psychosis intervention services are still very much in the developmental phase; however, the U B C EPI Program is the longest running program of its kind in British Columbia and has a cohesive, experienced team. It services the City of Vancouver, although the inpatient unit regularly admits individuals from around the province. Services are designed with reference to fundamental early psychosis intervention principles: early detection, a holistic recovery emphasis, family involvement, and provision of long-term phase-related support. Medication management is integrated with a range of psycho-social services reflected in the multi-disciplinary team. 22 Subsequent to hospital admission of a youth and during the acute stabilization phase, the social worker plays a primary support role in the youth and family members' adjustment. He works with them and the team to develop a treatment plan and goals. He has the unique ability to be a primary therapist while a youth is inpatient, and to continue in this role post-discharge i f the youth chooses to participate in the outpatient day program, which was the case in this study. It is more common for a youth to be referred out to a different worker on a community mental health team upon hospital discharge. As a primary therapist, she/he is able to see the youth and involved family members in a variety of contexts, including individual, family and group counselling/education, telephone and face-to-face consultations, and team/planning meetings. Part of my curiosity in choosing a specialized hospital inpatient setting was to compare it with my experiences in community mental health. I wanted to see how a social worker approached family practice within an institutional context that is, by nature and tradition, heavily medicalized, and where psychiatry is arguably most dominant amongst professions represented. The social worker is challenged to negotiate the tension between the systemic perspective of social work and the predominantly biological diagnostic orientation of hospital psychiatry. Social workers play an important role in facilitating family involvement due to their systemic approach and the long tradition of family practice within the profession. Participant selection Participant selection was organized through a chain referral process. My goal was to interview a social worker, youth and involved family member(s) who had worked together through the initial phase of recovery subsequent to an episode of psychosis. I 23 had to begin with identifying a social worker open to participating, and receive the appropriate organizational approval to allow him/her to contact former clients and family members who had participated in the program. Garfat (1996) argues "that even a single subject who is rich in information is much better than a group of subjects who are lacking in information, experience, or the ability to talk about and reflect upon that experience" (p. 47). Since I was pursuing a purposive ideal case selection, I was hoping to identify a social worker who demonstrated significant experience with youth psychosis, early intervention principles and family practice. The candidate would need to be practicing in an early intervention context that regularly served affected youth and families. My canvas of EPI programs in the Lower Mainland revealed that with the exception of U B C they are all still quite early in their development. In community mental health, which fields quite a range of presentations, it was apparent that few clinicians had consistent experience with EPI family practice. Since historically British Columbia mental health services have had very little preventative focus, workers are often preoccupied with the case management of clients who present at a more advanced phase of illness. As well, family practice in the field of mental health is considerably variable, and has only very recently begun to be influenced by EPI principles. Initially, I assumed it would be preferable to find a social worker outside of my field practice, that it would avoid the burden of dual roles - "student/supervisor" and "researcher/participant." However, this is a tension often sustained within ethnographic research, which was not too distant from what I was attempting through this project. The research interviews were conducted subsequent to the completion of my field practice. Ultimately, I found the perspective afforded by my participation in the U B C EPI program 24 allowed me an insider assessment of the overall EPI and community mental health services in the Lower Mainland. This gave me an opportunity to determine who in the domain of mental health social work within this region had significant expertise in this specialized context. I concluded that my field practice supervisor, John, best fulfilled the criteria (please note that names and locations other than U B C employed in this study are fictitious to protect the identities of participants). He has a graduate degree in social work, and has worked in his present position as a member of the EPI program for the past eight years. He contributed along with some other members of the team to a comprehensive provincial clinical care guide on early psychosis intervention (Ehman & Hansen, 2002). He regularly co-facilitates family education support groups, which I had occasion to observe and contribute to during the field practice. The team's program philosophy and John's actual casework reflected a consistent dedication to family involvement and a model of practice that I believed would be of significant interest to investigate. Moreover, he expressed a ready interest in participating in the research. The study was designed using a narrative phenomenological approach to explore shared stories of family involvement in the context of rehabilitative efforts to support the recovery of a youth from an episode of psychosis. The design was influenced by Garfat (1995), who similarly conducted a phenomenological inquiry to explore the meanings that participants ascribe to therapeutic encounters. Purposive sampling was employed to select John, an experienced mental health social worker, (my field practice supervisor), Ben, a 22 year old male youth in recovery from a major episode of psychosis and Kate, his mother, a 60 year old woman who had raised her son as a single-parent and had participated as a family caregiver with the therapeutic team. They were the only 25 respondents available as a family group to participate out of six families contacted through the social worker by mail. The social worker had engaged with the youth as his primary therapist on both an inpatient and outpatient basis over a fifteen month period subsequent to the onset of a severe episode of psychosis. To protect confidentiality, John made the initial contact with potential candidates. This was done using a form letter that I drafted, and he signed and addressed separately. The letter outlined the nature and purpose of the research and invited participants to contact me to express interest and/or seek out further information. It was addressed jointly to selected former clients and their family members who had participated in recovery efforts with John. They were invited to discuss the request. An information sheet was attached (see Appendix A) which identified the research investigators, summarized the project design, purpose and goals, confidentiality provisions and data management, as well as the contact number for the U B C Research Subject Information Line. The criteria I asked John to apply to participant selection included the following: former clients chosen would be those John had engaged with as a primary therapist to support their recovery subsequent to the onset of an episode of psychosis. Prospective participants had to have terminated involvement in the program at least three months previously. This was to alleviate any perception of pressure to participate in the research associated with the social worker's active position of authority, as well as to avoid compromising the therapeutic relationship in any way. Prospective family members would be those with whom he believed he had established an effective working relationship or alliance in the context of family involvement in treatment and care 26 planning. An effective working relationship or alliance was defined as one in which there was opportunity for family participation in treatment planning, establishment of basic rapport and some agreement about goals. John identified and contacted six prospective former clients and family members. I received contact from two family members. The first identified her interest, but after discussing with her son found that he did not wish to participate. The second family member, Kate, the 60 year old mother of a 22 year old son, Ben, said in our initial telephone contact that they had discussed it and were both interested in proceeding. Kate confirmed that she had had significant involvement with her son and John throughout Ben's recovery process over a fifteen month period. She indicated that the experience had a profound effect upon her and expressed a strong interest in providing a family perspective. She indicated that Ben was amenable to phone contact to confirm his interest in participating in the research. I contacted him the same day and he confirmed his interest in participating. He knew me from the day program, as he was just concluding his involvement as I was beginning to facilitate some of the groups one day a week for my field practice. He expressed support for the research project. I indicated to Kate and Ben that the student lounge of the day program was available as an interview site, and could be booked for private use later in the day after students had gone home. They both expressed satisfaction with this setting, Ben particularly noting the convenient proximity to his university classes and his familiarity with it. At the time of the interviews Ben was continuing with courses part-time in a fourth year post-secondary degree program, and was living in a local mental health service group home for individuals under thirty. His mother, Kate, was living on her own 27 in a different community. Ben had never known his father, who had separated from Ben's mother before his birth. Ben has step-siblings (from a previous relationship of Kate's), the youngest fifteen years older than Ben. Ben was raised by his mother as an only child. Ben and Kate both described his step-siblings as caring and supportive. The Youth Psychosis and Family Involvement Project was subject to review and approved by both the University of British Columbia Behavioural Ethics Research Board and the Vancouver Coastal Health Research Institute. The latter oversees research conducted within regional acute facilities, which was the institutional context for this project. Design strategies addressed participants' rights to informed consent, protection of confidentiality, review of information shared and freedom to withdraw from participation. The interviews The aim was to make an ideal case selection so as to learn more about the dynamics that lead to the constitution of an effective working alliance between a mental health social worker and a family member intimately involved in the care of a young adult child facing a significant healing challenge: "Each of us, even the most advantaged, has need of all the good examples we can find. Perhaps at no time is this more true than when we must confront suffering, as only those who experience long-term, daily suffering can attest" (Kleinman, 1988, p. 138). Although the core focus of the inquiry was the establishment of the working relationship between the clinician and the family member, inclusion of the youth's perspective was seen as fundamental to understanding this process. Since the clinician/family collaboration is ostensibly on behalf of the youth as patient, and involves 28 a great deal of information-sharing regarding his perceived status and progress, his role contributes significantly to the shape of the collaboration. I chose to include the youth to support a more holistic understanding of the meaning and implications of family involvement. As well, his experience reveals some of the effects of these efforts during his coping with the illness. A l l three participants took part in an initial joint interview, which was followed up by individual semi-structured, in-depth interviews. The purpose of the joint interview was twofold: to orient the participants' narratives in terms of the context of time, place and major events related to the illness experience; and to have participants identify specific interactions they each viewed as significant in contributing to establishment of a working relationship or alliance between the social worker and the youth's mother. Participants were asked to construct a timeline identifying significant contacts in the initial phase of treatment that they felt reflected meaningful engagement between the mother and social worker. This initial identification of interactions was primarily descriptive and intended to provide specific focal points to explore in greater depth in the individual follow-up interviews. The individual interviews were conducted in a narrative format to draw Out participants' stories of their progress through the labyrinth of serious mental illness. They were pursued as semi-structured, focused conversations to explore the key interactions constituting family involvement and the meanings participants made of them. Questions centred on the formation of the clinician/family caregiver relationship and its role in the overall recovery effort. Kate and Ben's individual interviews were conducted immediately subsequent to the joint interview. John was interviewed a week later at his office in the EPI Program site. Data analysis Narratives have the capacity to create coherence out of lived experience (Mattingly & Garro, 2000). Ezzy (2002) points out that " . . . narrative analysis refers to the whole of a person's account. The parts of the story become significant only as they are placed within the context of the whole narrative" (p. 95). To address the need for a holistic analysis I employed Labov's narrative structural approach to the text of the interviews. This involves the following essential components of narrative construction: • Orientation (place, time and participants); Complicating action (sequence of events); • Evaluation (meaning of the events, central themes); • Resolution/Coda (what happened; return to the present) [as cited in Rossman & Rallis, 2003, p. 297]. I have adapted this analytic structure to address the joint construction of the illness and recovery narrative by the three participants. This involved extracting a core narrative summary (orientation and complicating events) from the initial joint interview. This provided an opportunity to identify the voice of each participant in their respective contributions to building the narrative collectively. The opening section of the results presents the joint narrative summary and establishes key events and their ordering by participants. The following section presents the individual narrative evaluations of each participant. Mishler (1986a), quoting Labov (1972b, p. 366), identifies evaluation as the 30 heart of meaning in a narrative. It is ". . . the means used by the narrator to indicate the point of the narrative, its raison d'etre: why it was told, and what the narrator is getting at' (p. 80)." From careful reading and rereading of the texts I drew out a summary of themes representative of each of the participants' evaluative perspectives. The individual interviews offered a more in-depth opportunity to expand on their view of events identified in the joint interview. Each participant also offered additional vignettes to illustrate their points. This further operated to emphasize their individual voices and perspectives on the meaning of family involvement in the context of illness and recovery. I conducted member checks with each participant to allow them an opportunity to review and give feedback on the respective individual evaluative themes I had identified from my readings of the text. Quotes from participants are frequently cited to reflect their voice and intended meaning as faithfully as possible. The structural analysis is completed with a section on how the participants constructed a sense of resolution to their experiences and to varying degrees situated this within the present (resolution/coda). As the interviewer, I am identified in quotes from the transcriptions as "DO." In the final section of the results I present my interpretation of the participants' relationships reflected at the triadic level of analysis. This addresses what participant narratives appear to reveal about the interactive dimension of their involvement. Analysis was guided by use of metaphor and evaluative evidence of purpose, motive and depiction of agency. It also drew on White and Epston's (1990) narrative model of Relative Influence Questioning, and explores the influence of the illness on participants' relationships, and their relationships on the illness experience. This model has been 31 employed in narrative research in a similar mental health family context by Stern et al., (1999). 32 CHAPTER IV - RESULTS Narrative summary/joint interview - orientation & complicating events This section provides a descriptive summary of how the participants constructed the narrative of illness, recovery and family involvement. The initial joint interview provided an opportunity for all participants to contribute to a global account of significant events over the course of the illness and recovery efforts, and their respective roles. The narrative summary establishes the basic plot elements, and includes the perspective of each participant and how they interacted in combining to tell the story. At the outset I invited participants to tell the story of family involvement through the illness and recovery experience, beginning with an "overall picture" of the developments encompassed. I prompted them with a definition of a story as an account with a "beginning, middle and end," the latter coinciding with when they concluded contact with the EPI program. This was to be followed by their construction of individual timelines of events over this trajectory and more descriptive elaboration on any specific interactions or memories related to family involvement. Ben and Kate - the illness onset Kate immediately made a statement that seemed to invite her son to begin the story. He followed up on her cue and quickly established the power of the illness and how he was affected at the time: Kate: It started with Ben. Ben: Yeah, uh, I'm not exactly sure on the dates, but my psychosis started occurring in, uh, I think it was the summer of2002 DO: OK. Ben: And about on a weekly basis I would have these acute psychotic episodes. And, uh, for the most part I would try to clear it up and I would try to recover my bearings and, my self-esteem and other things that got swept up in the psychotic episode. And uh, I kinda, I didn 't really tell my mom, and I wasn't really telling 33 anyone, it was just something that I was dealing with on my own. And I was working at Sutton's at the time and, uh, and I was just really struggling a lot to reestablish myself in, in reality, because I was being kind of ripped away from reality and. . . uh, I guess my mom, my mom started noticing that I was, uh, my language was starting to, to change a bit. I was becoming more, more not incoherent, but just not, just not my, things I said kind of indicated that there was something wrong with my thinking. And, uh, she, I guess, (to Kate) maybe you can take it from there. Kate: I started becoming concerned about that there was something wrong mentally, something was happening with him that I didn't understand, I had no, I had no understanding of it, I had no experience with it, but I knew that there was something really wrong, and ...1,1 think I called Dr. G at that time. No, Ben went to the family doctor, at that, I asked him if he would go. And Dr., Dr. L, our family doctor, asked if Ben had a psychiatrist or had somebody he had seen before and Ben had seen Dr. G. So at that time I made an appointment with Dr. G . . . Kate described her struggle to comprehend the changes becoming apparent in Ben's behaviour that intermittently manifest in overt signs of distress. She noted that "we didn't keep " the initial appointment with the psychiatrist that she had persuaded Ben to attend due to hopes it was all not as serious as she had first thought, and the on again, off again nature of his symptomatic behaviour: Kate: Yes. And we didn't keep it, because I kept being reassured that maybe I was just dream . . . I was putting everything out of context or proportion or there wasn't anything really wrong. I guess I was hoping there wasn't anything wrong, but then things would start occurring again and. . . DO: What kind of things, could I ask, that you were you noticing? Kate: The things I noticed more than anything was how he spoke, what he said, um, that didn't make any sense, it just didn't make any sense. He would ask questions that would come out of nowhere and it didn't make any sense at all. Ben and his mother took turns building the narrative, conveying the introduction of this mysterious and unsettling force in their lives. He described a series of escalating, disruptive episodes that each involves a disturbing break with reality: Ben: I remember one time during the summer I was tutoring a student [. . .] DO: Yeah. 34 Ben: And, uh, so I would go out to, to Trenton from Fernview to tutor him [. . .] and then I would come back to Fernview and, uh, on that day I had a, I had an acute psychotic episode in the parking lot of Sutton's, like Ijust closed the door and then . . . DO: Mhmm Ben: This immense fear came over me that the world was gonna end. But, uh, of course it didn 't, and then I suppose I made it through that and then I came back and as soon I opened the door my mom was watching TV and all the power went off. So this is something like, at that time, like ... DO: Just at that time? Ben: Just as soon as I. . . DO: Right when you were having this fear about the world ending. . . Ben: Right. DO: Oh, gosh. Kate: Yeah. DO: How did that affect you? Ben: It scared me, well, it kinda made me feel that I had, it was my presence was so strong that the power would turn off 'cause somehow I was, I was connected with, I wasn't sure, but then I started talking about nuclear war, and like, that would be the first thing would happen, the enemy would turn off all the power, and then they would come in and they would drop bombs. That's what I was thinking at the time lots. DO: And that would have fit in with the ideas you were having at the time, the off chance power outage. Ben: Oh, yeah. Kate: And he was trying to, to, uh, say to me that 'prove to me this isn't happening.' And he insisted that I call one of his brothers to find out if the power was on at his place, and, and we did, uh, then, we couldn't make a connection with Ben. Everything kept reinforcing that Ben was right. The connection, the telephone connection wasn't happening. . . DO: Oh, Kate: He was getting more, um, agitated and more scared and more scared. Finally we did make a connection. His older brother reassured him that the power was on and everything was all right. DO: Yeah. Kate: But he was still frightened and scared, and that was, that was one of the major things that happened over the summer that I knew wasn't, just wasn't right. They portrayed a buildup of similar episodes that increasingly reinforced Kate's role in assessing Ben's condition and considering the need to seek formal help. She initiated another psychiatric appointment, which Ben followed through with and agreed to begin using an antipsychotic medication. She acknowledged her inexperience with 35 mental illness and expressed a hope that medical intervention would lead to a quick resolution: Kate: Yup. And I, Ifelt that just one, one visit with Dr. G would resolve everything, and he'd be fine, he'd be put on medication, and he would be fine. That's what I. . . DO: OK. Kate: Because I had no experience . . . DO: Yeah. Kate: With mental illness, I knew practically nothing about it. Ben's account adds dramatic urgency by emphasizing the destabilization of his interior world of perceptions, thoughts and emotions. Nonetheless, he made repeated references to his ongoing attempts to manage on his own. Ben noted some benefit from the medication and, at the same time, emphasized his own efforts to understand the phenomena he was experiencing and to maintain equilibrium: Ben: Um, well, it, as soon as I started taking risperidone, uh, things were OK. Like the episodes stopped, and, uh, I was starting to feel better, more confident that the world was a stable place, that I didn't have to worry about it disappearing or anything like that, and, uh, DO: You were amenable to taking the medication . . . Ben: Uh, I was kind of I was kinda working through it my own, on my own. I was discovering ways that would, um, reinforce my existence . . . DO: OK. Ben: Which was something that I needed to do because the episode would kind of rip me away from existence ... DO: Mhmm. Ben: And, uh, so I was developing this process where I would remember people, I would remember my connection to people, and that would forge like this, this kind of cycle of trust and just different emotions that, different positive emotions, and I, uh, then I had this amazing dream that, uh, that I was like in heaven and everything was connected, everything was stable. DO: Mhmm. Ben: And Ifelt like that was probably the end of it. And then, uh, then my mom kind of, kind of got in said that I should start taking, oh no, that was after that, I'd already been taking risperidone. Kate: Yeah. Ben: But I was a little disappointed at first because I was, I was working my own way out of it, I was finding my own solution to the problem. 36 DO: OK. Ben: Was what I thought. And then, um, and then I started getting these feelings in my temporal lobes. And, uh, kind of these like, just these weird feelings, and I felt that I'd be OK if I stopped taking the risperidone, and then I stopped taking it and I was OK for about two days, and then I had another psychotic episode and then I couldn't sleep for two days. DO: Oh. Ben: Then I went in to class and that was just, that was the end of it. I, I totally collapsed, and - not in class - but my mind collapsed. Ben phoned his mother for help at this point, and she spent an hour and a half talking with him and asking him to resume his medication use. Although she initially believed her son would cooperate with her advice, she quoted him as saying during their parting, "I lied to you, I'm not, I'm not going back on the medication, I can work this out. " After two more sleepless nights and more intense anxiety-provoking delusions Ben again contacted his mother for help and this time she directed him straight to hospital: Kate: Yes, he called me and I could tell by his voice that he was terrified, and he said that there was no help for him, and I told him that there was help, to get over to the hospital, just to walk over there, he said nobody could help me over there, I said yes they can. And I phoned his older brother to come and get him. [. . .] . And, uh, his older brother is just kind of didn't validate anything I was saying, he thought I was exaggerating. DO: Oh. Kate: Not, it wasn't that serious, and, Ben did make his way there. I was afraid that he wasn't even well enough to make his way over to the hospital. DO: Yeah. Kate: But he did. He made his way over there, and he explained what his experience was when he was waiting at the hospital to be admitted that somebody was stealing his identity, and that he was going to be annihilated, and that, uh, he got in there, but, he, the next, I didn't see him until the next morning and he had been through a terrible, horrific time it looked like. And he explained that he had the nurses there explained that he had been through a terrible time. They didn't tell me exactly what happened, but I don't think I really wanted to know if, 'cause I didn't know how serious it was 'cause I had worked with people with, that are mentally handicapped. DO: Yeah. 37 Kate: As well as having mental illness, and they've been out of control, and I've seen that happen, and I didn't want to visualize Ben in that same situation, so I didn't. . . DO: Right. Kate: So I didn't ask what happened that night but, um, he, he was, uh, in a really bad state when I came to see him the following day. And, um, then what do you remember from there, Ben? Ben: Um, after I called you I walked over to the hospital, and my thinking was, my thinking was still the same as it always was, but it's just the way that I felt, like, kind of, Ifelt like a zombie, and I felt like really compressed and dense, and when I went to the hospital there was like, I kind of still believed that the world was gonna end. And, uh yeah, so I went up and I gave the nurse my information, and the guy after me came up and he was, he was just checking in I guess but I thought he was stealing my identity. And, uh, then, uh, there was these rumblings and I thought that the end of the world was starting and, at the same time I believed that, um, that people could create the world with their minds. So began Ben's hospital stay. He described his experience throughout that time as "agony"; he experienced distressing subjective phenomena: ". . .just the intensity of the pressure in my head. Like, I don't know why that's, that's the way the illness manifested itself, but it was just everything caused me to, to clench in on myself. " Entry into hospital and the long haul of recovery Ben responded to my query about the length of his hospital stay and follow up in the outpatient day program, noting his ongoing vulnerability and difficulty handling attempts to return to the community: Ben: I think I stayed about five months, and then I was discharged back to Oakdale. I came back like, two days later, 'cause the intensity was just too strong. DO: Yes. Ben: And they readmitted me, and then, uh, I guess I stayed for another two months, and then I was discharged again. And back to Oakdale, and, uh, the same thing happened. Ijust didn't have any resilience, and, uh, I wanted to commit suicide, I was pretty scared, so I came back, and I told them that, and. . . DO: Yeah. Ben: Then I was admitted for about another month. And, uh, then, from there, I guess I gained enough, uh, recovery to leave again. DO: Right. 38 Ben: From there I went to, uh, Lakeview House. So all told it was like eight months. DO: Right. And then there was a point that you became involved in the Schizophrenia Day Program? Ben: Right. Yup. DO: Was that fairly soon after your last discharge? Ben: Uh, yeah. DO: And then, how long were you in the program? Ben: I was in the program for about four months. Since the narrative by Ben and Kate had depicted the illness experience up to hospitalization, I invited John - who had not yet entered the discussion - to describe his involvement subsequent to Ben's admission. John began by validating how Ben appeared affected by the experience: "I guess my recollection of that is a very scary experience for you, everything felt so real. " He went on to outline how he and his team members sought to involve family at the outset, speaking in a somewhat generalized fashion: John: . . . So, I think, I can't remember what the exact sequence was, but, usually what we try to do on the ward is try to contact family, and I might have spoken to you, Kate, just around what was going on at home, and what were your worries, and what you were seeing. Kate: Mhmm. John: Um, and to try to bring that back to the treatment, so including Dr. G, myself and the primary nurse and the OT, just so that we can get a fuller picture of what your experience was, Ben, and also what you were hoping to do and at that time it's going through school. The illness narrative culminating in admission to hospital went up to the midpoint of the 60 minute interview. Participants were then asked to construct timelines related to their view of family involvement in the recovery effort. The exercise was intended as a tool to help participants construct their view of significant developments related to their involvement together throughout the arc of Ben's recovery. Ben outlined four points: his 39 mother's response to his "unusual behaviour" by bringing him to see a psychiatrist; a discussion with his mother and John about cognitive-behavioural therapy; a similar joint discussion about disability benefits; and planning related to his discharge. Kate did not do a timeline per se, instead writing a short functional description of her initial meeting with John where she identified him as the team member responsible for assisting Ben with management of the social aspect of his needs. John's timeline covered a number of events and processes from first contact in hospital to Ben's discharge: initial "collateral info" gained from Kate; "feedback re: weekend passes & progress"; the family education support group (which Kate attended and John facilitated); telephone consultation; day program; and final discharge planning. Participants were invited to share examples. Kate began with her recollection of initiating contact with John: Kate: Oh, um, about a week into Ben's hospital stay I, I was concerned right away about Ben's, um, school, he was in fourth year, just starting fourth year. I didn't know what was going to happen about that, and uh, the staff there told me that there was a social worker that would be looking after that part of his recovery, and that, uh, would all be taken care of and I was anxious to meet John, I found out what his name was. And I was anxious to meet him at that time to find out what he would be doing or how he would be protecting Ben's interests in that area. And I was introduced to him. I remember that, and some, he, he reassured me that he would be looking out for those interests, and, and taking care of that end, whatever had to be taken care of in that area. DO: So, you had a lot on your mind in terms of what consequences at the time were to. . Kate: Right. DO: Ben, your schooling, Kate: Right. Kate was initially concerned with understanding John's role and how to manage the consequences of illness to some of Ben's practical life affairs, such as the status of his course enrolment and residence. Their contact was influenced by the fact that Ben is so 40 acutely i l l and disabled over the initial weeks in hospital that he could not cope with these matters independently. John and Kate described their respective roles in trying to gauge Ben's ability to function, and just how much he could participate in. Ben indicated his consent to open information sharing regarding his progress: "I was pretty open, I guess . . . No secrets. " They outlined communicating through a variety of means to stay up to date on concerns and address needs, i.e., by telephone, drop-in visits, patient-family sessions and team meetings. John raised the example of the prospect of weekend passes for Ben to visit his residence: John: I think also just describing what we were doing as a team. That we worked closely together with Ben, and with you [Kate], anything that was raised we would try to look at together. Uh, and I remember at that time there were concerns about, um, being at Oakdale [residence] and living there, and whether that was a good place for you [Ben] or not, and I think you tried some weekend passes, and there seemed to be quite a bit of communication around just around how that weekend went for you. How comfortable you felt in Oakdale, and also, I guess if it was working out for you or not. Kate and John recounted discussions about elements of Ben's life when Ben was still very acutely i l l , such as visits to residence as cited above, that they hoped he would be able to participate in. Ben's perspective on treatment options and weekend pass opportunities at that phase of illness placed some contrasting emphasis on his difficulties coping: Ben: I remember all three of us got together and we sort of talked about CBT, cognitive behavioural therapy. DO: Yeah. Ben: But, uh, it was just kind of, at that time I was in too much pain to really get much use out of that technique. DO: All right. Ben: So that's just one episode. DO: That they described this treatment approach. 41 Ben: Yeah. DO: So you had a chance to consider whether that was a fit for you or. . . Kate: And whether he should even keep his room at Oakdale. The three of us thought that, maybe there were four of us, it seemed that Dr. G was always in the discussion and, um, we thought it would be beneficial for Ben to keep his room at Oakdale. DO: Yeah. Kate: Even if he, he had dropped, um, three courses by this time, Ben was still attending two classes. DO: OK, yeah. Kate: Even when he was ill. I don't know how he did that but he did. DO: Wow. Yes. Kate: So we thought it was beneficial to keep his room at Oakdale, even just for the psychological benefit, you know, more than anything because he wasn't spending a lot of time there, but he did have the opportunity to go there on a weekend, and that worked well, sometimes it did, Ben [Kate looks to Ben inquiringly, he shakes his head] . . . never? Ben: No. Kate: No, he was really ill at that time, in a lot of pain. Kate and John described their manner of contact and consultation during the long initial months when Ben was more acutely i l l : Kate: . . . I guess, uh, it was intuitive. Ijust felt that I needed to ask questions and I, I needed to be really active in, in Ben's, I needed to be involved.. . DO: Yeah. Kate: Just in what was happening. DO: And John, you sound like you responded in kind in a way and, Kate: Yeah. DO: Was it sort of a mutual decision-making around how working out how often to meet would you say or how would that kind of take place . . . John: It's more we did a lot of telephone contact. Kate: Yes (emphatic). John: Where if you had a question . . . Kate: Right. John: Or concern, because I think 'cause you lived quite far away. Kate: Yeah. DO: Uhuh. John: So there wasn't always that opportunity to come in. Kate: Exactly. John: But, um, if you had a concern that we could talk about or I would certainly pass it on to Dr. G. Kate: Right. 42 John: So that we were all working on the same page. And I found that really effective. Kate: Yes. I remember one or two conversations that were, were really, really helpful and you, you were just letting me know exactly how you felt where Ben was and I was telling you what I felt and there was some good communication going on, Ifelt, I felt really, um, John: Yeah. Kate: Good about. At the fourth month of Ben's hospitalization, Kate participated in a family education support group that John co-facilitated with a psychiatric nurse and psychiatrist. She described it as "an excellent program, I really got a lot out of that. " Through this period Ben described slow, gradual progress in his recovery. He recalled working with John on a lengthy application for disability benefits. John highlighted Ben's initiative in this process, as well as in the discharge planning that followed later: Ben: . . . we also talked about, uh, disability benefits. Getting started on welfare and, uh, disability benefits. DO: Yeah, so quite a bit to do with your life circumstances and what it meant at the time got addressed at those meetings. Ben: Hmm. DO: John, did you organize the meetings, or how did that. . . John: Um, well I think that Ben took the lead because I think he was aware of what his needs were, and I was there to just help support and problem-solve. It was a copious amount of paper. Ben: Yeah. John: I think that thing was thirty pages long. DO: Oh my gosh. Kate: Umhmm, wow. DO: Really. John: It almost burnt out the fax machine (everyone laughs a bit). DO: Blew a fuse! Kate: Hnhh. John: But, I, I think kind of thinking about all the treatment quite, like all the, when we really wanted to focus on something we would have meetings around, uh, I think there was one point for discharge, that was one point where with Ben really taking the lead in terms of describing what you wanted to deal with, as the decision you made to go to Lakeview House. And then, from there we talked about what other places would be good for you, that's how you came to, to Seaton 43 House. And, also, part of that discussion, too, was coming into the day program. And I think we had the meeting just to talk about all the options. Kate described a shift in the communication pattern relative to phase of illness. During discharge planning, when Ben was more recovered, she received more information directly from Ben, and less from consulting with John: "Igot a lot of my information from Ben, because he was meeting with, he was discussing these issues with John and Dr. G and I would get it from him. " Kate and John both depicted this as a consequence of Ben increasingly "taking the lead" in decision-making. Kate described her approach to planning and decision-making through this phase: Kate: Uh, let him lead, watch him for, um, things he didn't want me involved in that I shouldn't, that I should back off and not, that he was quite capable. He was, he was recovering, he was somewhat, you know, and making decisions for himself and he was quite capable of all of that. DO: So it sounds like you, you were thinking of that as an issue and then observing for signs of, uh, . . . Kate: Yeah, there were a lot of things. DO: His decisions. Kate: That I should back off on and just allow Ben to sort out with John and Dr. G, and so . . . DO: Yeah. Kate: He was doing a great job of it. Kate noted, as well, her own initiative in learning about the housing options: Kate: And I went to see Lakeview House and I was, I was reassured that it was a good place for him to go, and that wasn't arranged with John or anything, it was I think I just took the initiative on my own because I do remember a comment being made by either you (to John) or Dr. G that the people at Lakeview House were quite open to family involvement and that I could go there and I could be involved in Ben's life, you know, that they weren't going to shut the door on me. DO: Yes. Kate: And I think that came from you (to John), it would have been you. 44 Near the conclusion of the joint interview John offered a summary of what he perceived to be family strengths, emphasizing their goal orientation throughout: John: But also, what I think really that the strength of what helped with the recovery was I think Ben was pretty determined to get better and that even though some of the symptoms still persisted that he really wanted to focus on the goals. Kate: Mhmm. John: And that both you and Ben were both very open and honest what was going on and communicating that with us. Kate: Mhmm. John: And then I think that the key element that we were able to talk about, uh, recovery, about sometimes about what's getting in the way, what the goals are, and, and of course actually work towards those goals. Kate: Mhmm. John: Um, and that made things really easy in terms of having something to work on. Kate: Yes. John: So I think that, that was a family strength. Just subsequent to John's summary above and beginning to conclude the interview, I openly reflected my perception of Ben's experience as " . . . a significant journey through that you 're quite a ways on through now . . . " Upon later reflection, I wondered i f I had not been overly influenced by the strength of the parent and social worker's assertions about goals worked through and progress sustained - Ben's ability to "take the lead." Although Kate responded with agreement to my echo of progress, Ben ended the interview with a response that dramatically quietened the room and provided a decided counterpoint to the suggestion that the narrative of goals and recovery progress had put him beyond the saga of illness: "Although sometimes, sometimes it doesn't seem like I've recovered at all. " 45 Evaluation The individual interviews Individual interviews allowed for an opportunity for reflection and further exploration of events identified in the joint interview. It was interesting to note what elements of the narrative participants would expand upon and, in some cases, introduce as additional incidents not revealed jointly. This process of focus and elaboration to achieve greater depth of meaning-making would be influenced, as well, by my own curiosity and perspective. Ben - individual evaluation Ben's view of his mother's involvement and assistance appeared to shift relative to his experience of the illness. In the individual interview Ben expanded on how their relationship dynamic changes over the course of the illness. He also characterized how his mother and the social worker collaborated. Ben described an initial phase of illness onset, when he began experiencing distressing inner phenomena, but was still managing his life independently. He was aware his mother had noticed changes in his behaviour, but despite her urgings to seek medical help, primarily saw it as a process to work through on his own. When symptoms escalated to a critical point, Ben entered a more acute phase requiring hospitalization. His inner distress was incapacitating, leading to isolation and difficulty engaging with either practical life affairs or any type of interactive therapy. Over a period of several months he gradually entered a recovery phase and achieved an increasing ability to engage socially and address more life decisions, although he remained subjected to varying levels of ongoing subjective distress. Ben's response to his mother's support 46 efforts, as well as the social worker's, varied significantly according to each phase. Ben's evaluation of his experience relative to his movement through these phases are summarized in Figure 1. Figure 1. Summary of main themes - youth (Ben) • Overwhelming and isolating effects of the illness and initial reliance on others to manage personal affairs • Sense of loss and suffering associated with the illness • Subjective authority about the illness experience and challenge communicating it to others • Ambivalence about "moving forward" related to severity of illness • Learning to exercise gradually increased agency and optimism despite inner pain • Over time seeing mother and social worker's support efforts as a useful "synthesis" Onset phase At the outset of the individual interview, Ben reiterated his preferred inclination to have worked through the illness on his own, which appeared characteristic of his orientation throughout the onset phase: Um, well, I was a bit reluctant at first, and, uh, Ifor one didn't think that I needed any medication. I felt that I was overcoming the problem myself, and that's why the initial meeting that we arranged with Dr. G, I shrugged it off a bit. Ben's narrative reflected the primacy of the illness experience which pervaded and changed his sense of self and reality. It described mystical qualities with moments of 47 illumination, as is sometimes described by others subject to psychosis (Davidson, 2003), but it is largely dominated by distressing, fearful perceptions undermining his stance in reality that are challenging to convey to others: . . . / felt that the world, I had the power to end the entire world, or annihilate the world;. . . the episode would kind of rip me away from existence;. . . it was just like, such a, such a crunch, and, uh, hardness, and denseness, tightness, tension, all these words doesn't totally explain . . . Initially, Ben did not identify his unusual subjective experiences as signs of illness; he was reluctant to tell others about them and attempted to cope on his own. Although at the time not identifying it as a form of illness, Ben said he recognized he was "dealing with a very serious issue " or a "process. " He described a tremendous inner struggle that left him cut off from others: Ben: That's pretty heavy duty. And the feeling was like, isolation. That was, that was the outcome of it, is I would be isolated like in a way sometimes I would say like, the absence of God is creation DO: Mhmm. Ben: Is where I'd be locked, and that's like hell basically. DO: Gee. Ben: And like when I wasn't experiencing the, this, the acute psychosis I was going through life believing that I had the power to, to end the world, and every moment of my life was a, was a struggle to not end the world in order to just, uh, just be happy with the way things are. When his mother urged him to see a psychiatrist, Ben said he was aware of the seriousness of his condition: "I realized that I was definitely in over my head. " He described reluctance about the recommendation to take medication, and portrayed it as a way to appease his mother's concerns: DO: What did you think about going on medication? Ben: Umm, it's a little, I didn't, I didn't really have any strong feelings either way. I wanted to, I did it basically to, uh, to satisfy my mom's, uh, worries, and things like that. 48 DO: OK, because to you did you, did you see what you were experiencing as an illness at the time, or I don't know how you saw it? Ben: Umm, no, it just felt like a process that I was going through. DO: Mhmm. Ben: Not necessarily an illness. DO: Ok. Ben: Yeah. DO: So medications didn't sort of seem quite relevant in your mind? Ben: Umm, I didn't initially think that medication would help. Acute phase Ben noted that after beginning the medication he "stopped having the episodes, " but instead experienced an odd "stuffiness in my frontal lobes. " He decided to abruptly discontinue the medication and stated, "that's when everything fell apart. " His symptoms became more disturbing and acute, and he turned to his mother for help, appearing to have reached the limits of his ability to cope on his own: Ben: So I guess the first place where my mom got involved was after I, uh, couldn't sleep for two days, and I went to school, and I felt this, this pressure in my head. So I called my mom, and I said there's something wrong with me and then she said, go to the hospital. DO: Yeah. Ben: That was the advice I took, there wasn't really anywhere else I could go at that point. Ben described the acute stage in hospital as intense and painful, a time when it was almost impossible to engage with others: ". . . when Ifirst got sick I couldn't even recognize my brother. . . I didn't know where I was, I didn't know who I was, I didn't know who other people were. " Through the most acute phase he described all his energy devoted to coping with his distressed inner world, and had difficulty relating to his mother during visits: Ben: But, uh, also sometime I was a little edgy, sometimes I, all I wanted to do was just lay down and try to deal with the tension. DO: Mhmm. 49 Ben: And, uh, I guess, uh, it wasn't very encouraging in the, in the initial stages for her to be, for her to visit me. There was nothing really to talk about, like, I, I wasn't willing to talk about just mundane things, and I didn't like talking about my, uh, condition, I was, she kind of, uh, she would, she would cast a lot of doubt on my, my condition. She would like, uh, she would say things like, uh, I think it's the medication that's making you feel this way. And like my only, my only hope in life was that somehow the medications were helping me. She was leading me to believe that, that they were actually causing the other problem, and like in my mind I knew that that was not right, but that's, those were the conclusions she, she had come to. At this phase Ben did not want to engage in either small talk or speculation about his "condition. " He portrayed his mother's attempt to assess the source of his symptoms as out of sync with his now hopeful attitude towards medication, which represents a shift away from his prior ambivalence on this subject. He accepted the psychiatrist's explanation about the potentially negative effect of abruptly discontinuing medication, and does not believe it is responsible for his ongoing difficulties. Ironically, they appear to have each reversed their positions; his mother's previous faith in medication now seemed, in Ben's eyes, replaced with skepticism. In his heightened state of distress, medication now appeared to him as a promising lifeline. The illness appeared to have a drastic effect on Ben's ability to exercise his sense of agency in dealing with even the most basic daily affairs, let alone major decision-making: "So it was, uh, in a lot of things, a lot of things Ijust didn't think about anymore, I couldn't, couldn't cope on my own, I couldn't think on my own like. " Initially he relied on others to manage affairs and to help sustain some hope through a very dark time. He found that John's visits provided some vital encouragement around the prospect of recovery: "I guess he gave me hope in certain instances, and encouraged me that I would, I would start to recover. And that was very helpful. I kind of needed that on a 50 weekly basis, 'cause like, I was getting very depressed..." The initial predominance of illness effects seemed to undermine suggested treatment methods: / was, I was still really bad off, the things they were, they were kind of talking about CBT [cognitive behavioural therapy] and thought stopping and things like that. It just, none of it, none of it could help [. . .] In the, in the initial stages, uh, it was, it was completely my problem, and uh, not like the nature of, uh, the illness was, was a pressure that was forced upon me, so it was something that only I could kinda know or deal with and people's input like just bounced right off. The illness markedly impaired his ability to participate in meetings with the social worker and his mother, leading to an undertone of anger when asked to engage with their questions and activity proposals: Ben: Um, I can remember once meeting with me and my mom and John and, uh, and just, uh, John's, like I was being edgy with everybody DO: Uhuh. Ben: 'Cause I couldn't, people would ask me questions I couldn't understand what they, what they meant. DO: Mm. Ben: What they were saying, and life was becoming very meaningless to me and, uh, I guess he, he would ask me some questions, I can't remember which questions but Ijust said well you should just ask my mom, 'cause I'm not prepared to answer. DO: Do you know what the questions were? Ben: Uh, I think they, they might have had something to do with Oakdale. Going on like that pass. Resolution/coda Ben's account moved towards resolution in the third phase of his illness and recovery narrative. As symptoms began to abate, Ben recalled gradually learning to invest himself in small steps to function in the world despite his feelings of vulnerability. This did not come easily. He characterized his participation in gradual steps to increase goal-oriented activity as reluctant and initially oriented towards satisfying others: "Basically, I had to just like, grit my teeth and try to, try to satisfy everyone's desires to 51 see me on the outside get better and manifest, um, characteristics that, that might seem like I'm getting better, such as that, you can go for a weekend pass and not kill myself or whatever. " Ben described this as a gradual progress to acquire a form of learned optimism: Ben: Yeah, um, I guess my mindset had to naturally evolve to the point where I had to be optimistic about things, like . . . DO: Yeah. Ben: Every, even the tiniest bit of um, recovery or, uh, something, that would be, like, going on a weekend pass, like . . . DO: Yeah. Ben: Trying things that, I had to, uh, I had to try and believe that, it was all, was all for my betterment. He described more active participation with his mother and the social worker in consulting about some of his life decisions: Ben: Um, I'm not sure, she, she didn't mention to me that she was advocating for me to, to go to Lakeview House, well, actually say that on one occasion that she didn't think that I'd be able to, uh, to, uh, to live independently, DO: Yeah, Ben: So, she was definitely helpful in that respect. DO: She'd give you a bit of feedback or discussion about it? Ben: Yes. DO: And then you would go through a process with John in terms of thinking through or planning how much to do? Ben: At all the options. DO: Yeah. How did that go? Ben: Um, it seemed like a natural progression. He did not appear as conflicted about his mother's involvement through this phase, and depicted her efforts with the social worker in a collaborative light: "Between the two of them working together was, uh, a good way, to get through decisions, and help me along with decisions that I had to face . . . it was a synthesis. " Ben recognized an element of advocacy in their participation: 52 Ben: Um, I would say it was, uh, it was a mission to explore all the possibilities DO: Mhmm. Ben: And to advocate for me on my, on my part, so that I would get the best help available. DO: So when they were working together effectively you had a sense of, of strong advocacy for your needs. Ben: Yeah, 'cause I couldn't really advocate for myself. Despite portraying a more affirmative view of how the working relationship ultimately developed, when returning to the present Ben emphasized the ongoing paradox of mental illness. He did largely recover his ability to manage daily affairs more effectively, but continued to suffer subjectively: "And, uh, and really like, even today, like, this hasn't gotten any better, and basically everything is like then, I don't know, everything's, I'm getting along just fine, but I'm still in a world ofpain. " Kate - individual evaluation In her individual interview Kate revealed the abrupt change to her life expectations that the illness has engendered: "I was not a very happy person. There was so many expectations, like Ben was my little brilliant boy who was speeding fourth, fourth year and twenty years old, he was gonna have his degree and be off and running. " Her narrative revealed the challenge of facing an illness that is difficult to understand, particularly in estimating its effects on her son and his prospects for recovery. It is confrontation with an unknown, which she faced with a persistent search for clues and pieces of the puzzle. Kate's account placed a high value in her relationship with John on the sharing of observations and assessments of Ben's status and progress. Figure 2 summarizes the main themes that summarize the effects of the illness, the nature of her relationship with the social worker and view of her role in her son's recovery. She emphasized the value 53 of having access to the social worker's frank appraisal of Ben: "I wanted to know how he perceived Ben's progress and where Ben was at. . ." When I asked what this professional perspective meant to her, Kate emphasized their pivotal authority governing the dominating concern in her life: DO: What did that mean to you? Kate: A lot, it meant a lot, yeah. Because, um, they were the ones who were dealing with him and assessing him and they 're, they 're the ones who are making all the observations about his illness, that's where I was totally wrapped up in it. I mean, it consumed probably the better part of my life for a year. DO: Yes. Kate: You know, there was no painting, I didn't paint for a year, and there was work and coming to the hospital, and that's all I cared for. DO: So absorbing. Kate: Yeah, totally absorbing. And being, feeling really, really sad and crying a lot, and you know, that whole year. Figure 2. Summary of main themes - family member (Kate) • Loss associated with setback to expectations for her son's life progress • The search for information as a means of orientation and participation • Need for recognition of family knowledge and expertise • Desire for fluid and accessible communication • Viewing the social worker as trustworthy and approachable • Identification with a role of advocacy Kate portrayed this access to the social worker's specific understanding of her son's progress as a significant means to participate, attempt some control and achieve a sense of contribution and connection to her son: DO: What did feedback mean to you, then, to have? Kate: Just, more informed, more in control, maybe I could contribute somehow to what's really happening, and I don't want to be out of touch, I don't want to, um, 54 to, um, evaluate a situation that's not, doesn't have any basis in reality, I thought that if I could share some information with John he could tell me what was going on, I could communicate better with Ben . . . and I could offer him something he really needed... Kate valued open and ready access to John in the event of needing to share concerns or address decisions and needs. Joint meetings with Ben, family and team members were held intermittently, but she attributed significant exchanges as occurring "by phone, or chance meeting, it, it, you know, just some conversation in the hallway or something, uh, nothing significant happened in those planned meetings. " In her view, formal team meetings she and Ben participated in lacked spontaneity, new information and specific insights, as opposed to what she characterized as "real information. " A d hoc contacts that she initiated are more valuable: ". . . it's more spontaneous [speculative tone], maybe it's you say what's right off the top of your mind right away, and there's no preambles, there's no beating around the bush, and that sort of thing. " She affirmed the value of being able to drop in to John's office when her son was in hospital, and for having her phone messages promptly returned. She depicted John as "approachable" and "friendly.'''' Kate's narrative conveyed her perception that John is responsive to her concerns, respectful of her input and reliable as a consultant. These relational characteristics appeared to lay the foundation for building trust: ". . . he was always friendly and saying hello, and that, you know, made me feel good about him that he cared about his job and about people is really where it's at, you know." ". . . he always seemed friendly and relaxed, and, and you know, willing to, to be available..." 55 Since she was living at a significant commuting distance from hospital, Kate placed significant value on telephone consultations. When she felt pressed with concerns she particularly valued "inside information " over empathic listening from John : Kate: . . . And then there were a few times when I had some real concerns about Ben's progress, and where he was going and. . . DO: Oh, yeah. Kate: I called John, and John phoned me back and, I remember having at least two helpful, really good conversations with John. DO: OK, could you, sort of, elaborate a bit on what they involved? Kate: Well, uh, sometimes John lets you lead, and doesn't do a lot of talking. DO: Yeah. Kate: And, and it was kind of, frustrating because I wanted John to tell me what was happening, 'cause I didn't know and, and he had more inside information about Ben. DO: All right. He's here [at the hospital]. Kate: Than I did, yeah, and I wanted to know how he perceived Ben's progress and where Ben was at, and many times John wouldn't, he would just, you know, just be . . . open to listening. DO: Yeah. Kate: Not to talking, so a few times, he did, he opened up and he talked about Ben's progress, and where his expectations for Ben and, and, um, I, I can't remember exactly what was said, I just remember making a comment to somebody, one of the boys, my sons, that I had a really good talk with John today, and things are, are going to work out really well. DO: OK. Kate: You know. DO: So John, and this is sort of just to understand what was happening in your exchange, he was revealing more than usual. Kate: Yes [emphatic]. DO: Than usual. Kate: Yes. DO: About . . . his observations? Kate: Yeah, about his observations, about Ben's, uh, where he was at in his recovery. During the acute phase of Ben's illness, Kate recognized that he was in "a lot of pain, " and despite more hopeful initial forecasts from medical staff came to understand that he was likely to have a prolonged recovery. This entailed successive weeks " . . . where Ben really was in a very bad way, he, he would just stay in his room most of the 56 day and not even go down to any of the programs being offered. " She sought out John during hospital visits when little had changed and Ben was withdrawn and reluctant to see her: Kate: Yeah, I was probably here about three times a week and, uh, sometimes for hours and hours, because I wouldn't go away when Ben would tell me to go away, I'd just stay in one of the rooms and wait for him to get out of bed or, DO: Yeah. Kate: And John would be around and if I would see him sometimes I would just approach him and ask him how is Ben doing, what are you, how do you feel about his. . .? DO: OK, can you recall any instances of that, I would be curious how that was . . . Kate: Let me think. DO: How did that go? Kate: Uh, any specific times about [pause] No, usually he would say to me, come by the office I'll be in such and such time and we can talk. DO: OK. And did you take him up on that? Kate: And I would find him, yeah. I would go in there, but there was nothing significant that was said or you know, I guess I, I needed some reassurance more than anything that he was, uh, you know there was nothing significant progress being made so . . . DO: Yes. Kate: Nobody could say, well, Ben, is really getting on his feet. Kate described entry into advocating for her son's care as his condition deteriorated, which was one effect of the illness on her relationship with Ben. She described this as a natural expression of her role as a parent and caregiver, and expected service providers to share this perspective as well: DO: You 're an advocate in a way. Kate: Yeah, exactly, that's how Ifelt. His advocate. And everybody else should've, Ifeel that they should've been, they, they 're advocates as well, and they should know that even if I bug them with my persistence that I'm advocating for my son's life [. . .] That's my role. I'm mom. I'm his mom [chuckle]. DO: Yeah. Kate: There was no other role for me to take, you know. Kate described being active in her search for information and understanding about the illness and treatment. She followed up on an advertisement and participated in a 57 family education support group co-facilitated by John that she characterized as an opportunity to ". . . learn all I could about the illness and then ask specific questions of Dr. G, or John. " She expanded on the nature and focus of the group: DO: So, that group, did that bring that issue into focus for the need to have some time for yourself, thinking about how you were affected by things? Kate: Mhmm. DO: That's the function of that group. Kate: Mhmm. Yeah, the function of that group was that, and to educate us about the illness, and to, you know, treat our kids with more understanding, 'cause, because nobody really understood the illness that much. DO: Mhmm. Kate: The people that came there, you know, Ifound the men were sort of, um, more hard, hard-hearted about the whole thing, you know, whip that kid into shape, and you know all he needs is da-ta-da-ta-da and there was one man like that in the group, but at the end of the group his opinions were softening, and you know, towards his son, yeah, it was for the family of the ill person. DO: Yeah. Kate: Yeah, it was really good, I was anxious to get here every week to go to the meetings, yeah. Kate said her own research led her to consider "alternative treatments, " which she pursued with the force of an advocate: Kate: That's right, yeah. And I began to read about, um, alternative treatments rather than the pharmaceuticals ... DO: OK. Kate: Way, you know DO: Yeah, Kate: And I got in touch with Dr. B DO: Oh, yeah, around the multivitamin therapy? Kate: Yeah, the megavitamin, niacin, and all of that stuff, and I arranged to meet with Dr. B, we did go [...]! brought Ben there and, uh, I needed to get a referral and Dr G was absolutely not agreeable to that, he would not give me a referral. DO: How, how did that affect you? Kate: Ifelt very angry about that. DO: Oh, Kate: You know, I was really disappointed, and so, I just decided I'm determined, and I will get my referral no matter what so I went to my family doctor, he said go to your psychiatrist and... DO: Yeah, Kate: Or Ben's psychiatrist, so I went to another doctor finally, the third doctor gave me a referral. 58 Kate recounted this venture as essentially her initiative. She did not involve the social worker, noting that medication choice was a matter to address with the psychiatrist. Her account did not make any reference to her son's opinion or position on the medication or the prospect of an alternative therapy. At the conclusion of this account she noted that Ben did not end up following the treatment, but did not identify her sense of his view of this alternative that she had researched and sought out: Kate: And that was, wasn't very successful in any case, and Ben didn't follow the treatment, he gave him a bunch of treatment. But he only saw him for a half an hour, made a diagnosis, and you know, I don't think that's good medicine, not very effective. DO: Uhuh. Kate: Ben did try it for three weeks and then went off it, yeah, so, yeah, it was really painful to see Ben. She was alert to how her observations were received by professionals, and whether or not she was afforded respect for her own knowledge and observations: . . . you know, with some professionals you don't, you don'tpresume to say that my son is 75% there because you 're, I'm not a professional. . . who am I to say to tell you, the professional, that my son is. With John you could do this, because John does not, um, is, is approachable that way. . . When describing another treatment decision months later, Kate identified her son's interest and motivation as a more central issue reflected in feedback from the social worker. When Ben was more recovered and had the option of participating in an outpatient day program, she was keen to see him pursue the opportunity, but accepted the social worker's reinforcement that it needed to be her son's initiative: You know, that, that sort of thing, has Ben, I asked him a couple of times, would Ben be ready for the day program and he would say to me, he said I don't know how often he said it but I do remember him saying 'now, Ben has to take the initiative on that, I can't force him to go into the day program, he has to be the 59 initiator or else he won'tget anything out ofit'... Oh, that, that was absolutely right. I knew that, I knew that. Kate also noted some appreciation for the social worker's communication style, which attended to one step at a time: Kate: Yes, yeah, that I wanted, uh, not I what I wanted, but what was good for Ben, was, uh, that he had to have some, some support out there, he couldn't just, you know, get discharged and there you go, on your own, that didn't work for Ben, it wasn't working. So John knew that and we, we talked about that, and he said, well, we have to wait. I remember him saying something about we have to wait for a space to open up in Lakeview House and then there wasn't a lot of conversation around that after that until it actually happened. DO: Oh. Kate: Yeah, so that, that's pretty well his, the way he, you know, I really appreciate the way he operates, the way he, that the way he conveyed the information and that, you know, it wasn't a lot of hopeful talk, and all that sort of thing, it was, it was there when it happened, it really, it was happening. Resolution/Coda Kate's descriptions of her relationship with John concluded with an observation about reciprocity. By the time her son was out of hospital she not only sought to elicit information about Ben in a one-way fashion, but additionally shared her assessment of Ben's functioning as a meaningful contribution to the therapeutic team: Kate:. . . The things that, that really come, um, come to mind is the conversations we had over the phone was the, um, about Ben's progress and, and what was happening around his housing and a few times I remember I said to, he wanted my opinion about where Ben was at, because Ben was in a group home by this time, and I was seeing more of Ben probably than John and, I, oh no, Ben was at home, he comes to my house, um, for a month at a time during holidays and stuff, DO: Yeah. Kate: And I said to John once if I had to put a number on it I would think that Ben is about 75% there, and John felt, his response I remember was, was really positive, because he had a number to work with, he had something to, uh, you know, tangible to say, OK [...]/ was saying to John, if I had to put a number on Ben's progress right now, I think that Ben is 75% there . . . and John felt, his response was really positive and he said that was really good because he could now, um, well I don't know how much credence he put on my 75%, but he, he said 60 something to the effect that OK, now I can sort of judge better where, where I'm at with Ben, or where Ben is at, and you know, we could go from there. She appeared affirmative in providing her perspective to the social worker and leaving it to him to work out final decisions with her son. She described the social worker fielding her input on decisions, in this case the assisted living options upon leaving hospital, and working it out with Ben separately: DO: You could sound him out on the issue. And then he'd go through a process with Ben or. . .? Kate: Uhhh, let me see, how would that work? Yes, it was, it was Ben first and then I would hear later, you know, he didn't, uh, facilitate any discussion with Ben and I, he would work out whatever was going on. With Ben. DO: Which would be part of Ben's decision-making. Kate: That's right, yeah. DO: And then you'd hear about it from Ben. Kate: Exactly. DO: How was that process for you? Kate: That was good, that was good. I, I appreciated that. I didn't have to hear it directly from John, you know. Subsequent to finishing the day program and contact with the EPI program, her son was transferred to a different mental health office and she noted some initial success in participating in meetings with Ben, the new social worker and psychiatrist. However, she described frustration in her attempts to maintain ongoing contact with the newly assigned worker: I've phoned her probably three times trying to make, uh, further contact. . . In fact I got sort of, um, 'I'm on the phone's right now, and I'm really busy' and, you know, that was the last time I spoke to her, so I don't know if it's worth pursuing and trying to establish a good, you know, relationship there, but right now I'm just tired of doing that, and I don't want to fight for it. It was unclear as to what Ben's view was of the need or importance of her continuing involvement with service providers at this more current stage of recovery. 61 John - individual evaluation Early in the individual interview John characterized his relationship with Ben and his mother as a long-term effort requiring regular ongoing contact. He identified his role in sounding out Kate's concerns and that treatment would involve family participation: John: So, really, the work was really involved over the long term. Um, and with Ben, uh, the first goal was to try to stabilize him a bit so that, he did have some more relieffrom symptoms and anxiety. Uh, with the mother, it's more just reinforcing, my role was just to reinforce. It's almost like a secondary voice in terms of just touching base about what her, um, ongoing concerns are, maybe week to week, DO: Yeah. John: If there's anything immediate that we need to deal with. Um, to reinforce what our treatment goals are and to explain the treatment process that, you know, there will be family meetings which we did have with Ben and the mother, and myself and Dr. G [. . .] so it was just, basically, what her expectations were, what her concerns were and, basically, what were we doing for Ben? And to try to keep having that ongoing. He described his interest in Kate's observations of her son's coping as part of the team's ongoing assessment process: . . . really, the only way to gauge that [recovery] is to really, um, take step by step successively, so, um for example, how he does on weekend passes, what she's seeing, basically, she, she is really, um , an assessment for us in terms of what she is seeing with Ben, and one of my goals of it was to really hear that from her. John presented this input as part of a "composite picture " that informs support planning: John: . . . based on what Ben identified and what the mom identified and what we were identifying as a team, is how to best enhance his recovery, and I think Ben had some insight and was open to the idea of receiving some support, and so part of that discussion led to things around housing and finances and academic, um, accommodation [...]/ remember asking her at one point how Ben does on his own, how he's doing on campus, DO: Yeah John: Um, what was his daily functioning like, how capable he was of being responsible for himself or things such as getting up in the mornings, hygiene, 62 managing his meals, um, if he was engaged with friends or how much support he had. And so, that's helpful in giving us a snapshot in functioning. Figure 3 summarizes themes related to the social worker's narrative evaluation of his working relationships with Ben and Kate. Figure 3. Summary of main themes - social worker (John) • recognizing the family member as an active participant in assessment and treatment planning • conveying to the family a primary dedication to supporting youth's right to self-determination • taking a holistic view of the youth's social and developmental growth • balancing hopefulness with the understanding that recovery is a long-term process • applying a sensibility around timing when formulating recovery steps John differentiated his role as a social worker from the other medical professionals involved and made a case for a more holistic view of the person. He described taking into account Ben's overall social and developmental context when interacting with him. He described his intention to explore beyond the usual clinical inquiries about symptoms towards Ben's wider interests and possibilities, such as hobbies, relationships and social activities: . . . How can you fill in the person, and I think that's part of the timing of knowing about the timing and when to ask something, and they seem from, by all the people maybe it's not relevant but, I think it's just validating the personhood of the patient that, if you always talk about medications and illness, the way they 're valued is as a person as being worthy is if they 're compliant with medications, if they 're compliant with treatment. So with, with Ben we might just have a ten minute chat about skateboarding, That part of what makes up his whole person, um, maybe a sense of humour, um, how he connects with other people, the fact that he enjoys skateboarding, and, and we talked about, I mean to 63 my very limited knowledge of skateboarding, cause I'm not sure . . . what he thought of Tony Hawk, who I think. . . I think he is a big, I think he's like the Wayne Gretsky of skateboarding, and then so Ben was able to talk about going to, um, I think that there was like a concert where there was skateboarders doing actual skateboarding things and bands playing. This perspective influenced the focus of his working relationship with Ben's mother. John described an intention to widen Ben's social vision and capabilities as a way to enhance his independence. He sought Kate's involvement not only through drawing on her observations about Ben's coping, but also in her support for the development of his own goals and decisions. John's account depicted integrating family participation with a fundamental emphasis on the youth's self-determination, which he presented as a principle consistent with current professional discourse related to psychosocial rehabilitation. He outlined his intention to influence Ben's mother to share this perspective: . . . what would help recovery is for Ben to make informed decisions and to make decisions for himself, and to participate in the recovery. And also for the mother to understand the same thing and th-that's one of the reasons why we wanted her to go in the family education support group . . . And, and that's common enough where, um,for example, um, the person who is in our day program might not want to be here but their family is pressuring them to come here . . . And so it's balancing interests, but also self-agency and motivation and the principles, um, of rehabilitation which is the person really needs to own their motivation and, and their goals. And often times that comes into conflict. John recounted an occasion where Ben has been out socializing with friends on the weekend and ended up in the police drunk tank and having his skateboard confiscated. John identified this as an instance where he had a role in influencing the parent to accept the consequences of independent decision-making as part of the youth's 64 learning process. John explained that as a therapist he does not want to be aligned with the role of parental control agent: John: That came up with him just around the use of alcohol. DO: Oh, yeah. John: Um, where you know, we start off with a goal of socializing and being active on weekends, and so he went to bars and clubs, he knew some people from the program or with friends, um, to the point where I think he, at one point ended up losing his skateboard and being thrown into the drunk tank. DO: Oh, OK. John: And, so . . . DO: Some hard knocks. John: Yeah, some hard knocks and debriefing with Ben, and the mother had been expressing concerns about his alcohol use. DO: Oh, yeah. John: And I think those were one of the cases where he was an adult, although he has a mental illness, he has a right to consume alcohol and no one can stop him. DO: Mhmm. John: Um, certainly his treatment providers we cannot tell him not to, DO: Yeah. John: We can't put him on Antabuse, we can't, um, do some of the measures, I think, sometimes families really is, and understandably they 're concerned, that they 're feeling pressured to, to do something. DO: Yeah. John: Um, but, I think, with, with Ben we were able to work through, you know, just very . . .um, basically, motivational interviewing, that, what happened, what was your experience like, you know, did you accomplish what you wanted? And what was that experience like for you? DO: And hopefully help him draw some conclusions out of it. John: Right. Right. DO: Yeah, and S was able to . . . John: I think she was, she was anxious and worried about the use, and I think just for us to be realistic with her, um, and also to try to maintain our rapport with Ben that we don't want to be parentified, as well, that what our role is, DO: Right, yeah, John: Is support. And for him to consider his decisions. DO: Yeah, so then would you reflect to S that when you say, be realistic, you might sort of reflect some of the realistic aspects of the situation that he was pursuing? John: Mhmm, and just to contextualize around why young people drink, that it's kind ofpart of that social culture around that age, and that he, uh, 'd be having anxieties in public, and so most people do drink to massage that. DO: Mhmm. John: Um, that his goals were to socialize and that it might not end perfectly, DO: Yeah, 65 John: Uh, and that he needs to be more responsible for some of the outcomes. John conveyed a sensibility around timing that appears linked to attending to Ben's capacity to manage his life world in a step by step fashion. He acknowledged Ben's ambivalence at times around expanding out of his state of isolation, and described ongoing three way discussions to sound out Ben's interests and concerns about social possibilities: John: Ambivalence, in the classic sense, where it's push and pull, where, DO: Yeah. John: There's some motivating factors that he wanted to do some of these things and, and the pull factor, where some things were getting in the way, or some barriers. Um, and so not only what with campus and student life, but also housing, what would be the ideal situation, what would help him cope with his illness, but also move forward and, and I think eventually that enabled us to talk about um, supportive living around a group home. DO: All right. John: Um, and, and with those discussions that was also discussed with Kate as well, just to see what her opinion was. DO: Yeah. John: Um, and also Ben was very open to us communicating with his mother around those issues. Resolution/Coda John affirmed Kate's methodical approach to Ben's recovery: " . . . 7 think that Kate was very good talking about, is what to expect, what is the next step, and what's the step after that. " This appears consistent with a view towards recovery as an ongoing, long-term commitment, a perspective which John believes enhanced trust with Kate: "And I think that inspired some faith with her that we were really committed to working with Ben in the long run. " John noted the dispiriting nature of Ben's enduring symptoms, such as the strange pressure in his "lobes," which John acknowledges as "real" for Ben but speculated that it 66 may represent a psychiatric syndrome, a "somatic delusion. " He described working with Ben over time to develop a more specific ability to communicate the variations in a difficult subjective experience. John presented this as a means to help Ben more accurately express how he is affected by these symptoms to his mother and other people in his immediate environment: John: Um, it's, it's always disheartening when we have to deal with persistent symptoms or when someone is trying really hard to move forward, and there's barriers, um, I, I think, it was a struggle because it was pretty firmly held belief that this was happening, although there's no organic cause for that, and that, we know that it's, it could be a somatic delusion, DO: Yeah. John: Um, that for him it feels very real, um . . . and I think that it can be a struggle for him to try to cope with that persistent symptom. Although he's very articulate about it. DO: Yes. John: Um, I mean, to the point where we, he was actually able, we drew a scale together from um, zero to ten, where when attention is really bad it's a ten and he really had a narrative for each interval, DO: Yeah. John: So, DO: It was a way you would work with it to allow him to share his experience about it. John: Yeah, and, and so, um, I think, when we did that, you know, we were able to share that with where he was living at Seaton House. DO: Yeah, John: Um, and also I asked him if he wanted to describe that to the mother as well in terms of the scale. DO: All right. OK. So that would be a means that you would to, for the family to John: For families to understand. DO: Just understand what he feels he's dealing with. John: Yeah, so he can say I'm feeling like a three, and they can look up, well, three really means this. DO: All right. John: Was it soft and fuzzy, or is it really more acute and paralyzing? Where he can't get out of bed. DO: So trying to support him to just create some terms of reference with these experiences. 67 The social worker's narrative was characterized by an explicit professional discourse. John emphasized principles of social work and early psychosis intervention related to client autonomy, determination of interests, goal orientation and conviction about recovery. A triadic level interpretation of the working alliance In the joint construction of the illness and recovery narrative, Ben's voice communicated the disruptive power that psychosis wreaks in his life. He described an illness that is largely unknowable to others because it operates at the felt subjective level of how he experiences self and the world. Others can only observe secondary effects in his appearance and behaviour, and puzzle over what it means for him ultimately to resume his life projects. His narrative focus on his inner world provided a counterpoint to his mother and social worker's concern with the revival of his ability to navigate the outer world. Ben's contribution to the narrative illuminated a tension between his struggle with a traumatized inner world, which isolates him from the outer world, and the challenge to engage in that world again. Metaphor and the ground of reality Ben's language and imagery conveyed the profound force of the illness experience. He was "swept away " and "ripped out of existence. " These are metaphors of catastrophically losing one's stance or grounding in reality. Ben was swept into a universe others cannot see and only he can describe. He began his account in the joint interview with these images, and in the individual interview elaborated on the challenge of struggling with such a destabilizing range of phenomena. His narrative intention appeared to be focused on expressing the scope and depth of this inner struggle so as to 68 keep expectations for recovery in perspective. Treatment, when held in this light, was not a straightforward track. Ben informed us with some authority that there is far more involved beneath the surface. He described having to expend a great deal of energy and attention just to maintain his inner equilibrium in the moment. Even when the "acute phase" has subsided he must endure and manage an array of negative symptoms that no one can observe or understand directly. Kate's use of metaphor also centered on her son's relationship to the ground of reality. She constructed Ben's recovery as "getting on his feet. " She further extended the metaphor as an image of her original hopes and expectations for his movement in the world: "He was gonna have his degree and be off and running. " Instead she bore witness to his progressive immobilization, which filled her with sadness, a sense of loss and mystery. Her narrative focus emphasized the quest for information and treatment possibilities to achieve some reversal of the process. As her son became increasingly absorbed and disabled by his shifting inner world, she portrayed assuming a corresponding increasingly active role negotiating decisions around his care and social circumstances in the outer world. John's narrative also employed the use of metaphor related to grounding and movement in the world. He valued Kate's participation in the recovery effort talking about " . . . what is the next step, and what's the step after that. " He brought a methodical approach to the arc of recovery, and reinforcement of the notion that persistent exploration of priorities and interests will invoke progress. Ben's narrative communicated the primacy and authenticity of his struggle with the illness experience. The intensity of his account challenged those who formulate 69 treatment plans to reckon with what the illness exacts from him on a day to day basis. His mother's narrative voice conveyed the urgency of a concerned parent intent on learning what can be known and seeking treatment that will revive her son's powers in the world. Perhaps in recognition that it is essentially their story, John leaves much of the telling to them in the joint interview. Although this is consistent with Ben and Kate's perception of him as "laid back, " as well as John's emphasis on clients "taking the lead, " his narrative appeared firmly rooted in a professional discourse organized around principles of social work and psychosocial rehabilitation. Narrative constructions of agency Each participant's contribution to the narrative pivots in some way around the exercise of personal agency. Participants all described how the illness undermines Ben's ability to manage independently despite his ongoing attempts, leading his mother to assume a more definitive role in advocating for his care. The advent of Ben's illness and her identification with the role of advocate had significant implications for their relationship, and also appeared to structure her expectations around her working relationship with the social worker. A l l three participants recognized advocacy as an essential characteristic of her involvement. John appeared to approach his working relationship with Kate with frequent reference to a rehabilitative discourse emphasizing youth self-determination. Yet he also had to contend with Ben's prolonged state of withdrawal through attempts to facilitate his re-entry into the world. In his account of the initial phase of illness Ben emphasized several times his own efforts to understand and manage the "process " he was experiencing. He expressed reluctance initially about going for formal help and taking medication: "I was a little 70 disappointed at first because I was, I was working my own way out of it, I was finding my own solution to the problem. " Again emphasizing his loss of footing, growing distress led Ben to a recognition he cannot cope entirely on his own: "I was in over my head. " Kate's narrative reflected a corresponding increase in urgency and pressure to intervene as she observed his deterioration. She took incremental steps that steered her son towards psychiatric services, at first relying on persuasiveness. He "goes along" with it, still attempting to manage his inner world, and then chose to experiment with discontinuing the medication. Subsequently, his condition declined even more precipitously and he initiated contact with his mother for assistance and direction. Hearing his more direct appeal in the midst of a crisis, she was no longer tentative and offered him firm direction to emergency psychiatric services. During the most acute phase of illness in hospital, Ben was considerably withdrawn and cognitively impaired. Outwardly immobilized, Ben retained a sense of authority over the nature of his inner struggle: "In the, in the initial stages, uh, it was, it was completely my problem, and uh, not like the nature of, uh, the illness was, was a pressure that was forced upon me, so it was something that only I could kinda know or deal with . . . " Yet with external affairs his mother assumed an active role dealing with medical staff, seeking out their view of her son's condition and prospects for treatment. She became concerned about the consequences of the illness to his life projects and circumstances, particularly his academic involvement. Concern about the implications to the social dimensions of Ben's life brought Kate into contact with the social worker. The therapeutic team offered a discourse organized around the concepts of "psychosis," the illness/disabler, and "recovery," the resumption 71 of a life project. The illness invoked the youth's disconnection and made his exercise of agency problematic. John presented a discourse organized around recovery/rehabilitation involving goal-setting, gradual steps and youth self-determination. He described openness to fielding Kate's concerns, which appears confirmed by Kate's characterization of their relationship, and their narratives demonstrate an overlapping fit between parental and professional emphasis on strategizing towards Ben's resumption of social functioning. John's referral of Kate to the family education support group revealed an intention to have Kate assimilate the basic elements of the rehabilitative discourse. There appeared to be an intention to shape her treatment involvement through encounters with other families in an education program formatted by professionals: John: . . . actually they were both pretty good at understanding that recovery is process, these are things meant to help and enhance recovery. That ultimately what would help recovery is for Ben to make informed decisions and to make decisions for himself, and to participate in the recovery. And also for the mother to understand the same thing and th-that's one of the reasons why we wanted her to go in the family education support group. DO: Uhuh. John: And, um, and she did. That process was able to, to really help her understand, maybe in some ways we couldn't really do in a family meeting or one to one was that she was able to hear from other parents that we went through a full session or full series of the family group, DO: Yeah. John: And she was able to understand more about symptoms, recovery, medications, um, helping to caregive for your family member, managing crises, um, communicating. The interplay of narratives nonetheless reveals a paradox that is played out in the initiation, planning and pacing of activities proposed as representing a return to Ben's life projects. He was absorbed with attempting to understand and endure his inner distress. For several weeks he was not very available for active decision-making, and his narrative 72 brings out his reticence about initiating much socially over the ensuing months. John's rehabilitative discourse highlights youth autonomy and self-determination. Presumably, Ben was configured as the central agent in the rehabilitative process. Yet the social worker and parent were challenged by Ben's withdrawal and inactivity. Moreover, Ben was contained in an institutional environment he had entered as a last resort, a choice that was hardly a choice at all. If self-determination means supporting the youth's initiative, how do caregivers, formal or informal, grapple with his prolonged state of withdrawal and reticence to step into any social sphere? While Ben was withdrawn his mother was dedicated to seeking out all possible information related to his condition. She assumed a proactive stance towards educating herself about mental illness and the nature of available treatments. She was a concerned parent taking the lead in gaining understanding and exploring possible avenues. She began to look beyond the scope of conventional treatments: " . . . 7 began to read about, um, alternative treatments rather than the pharmaceuticals . . . " Through her own research Kate developed interest in the potential benefits of an alternative treatment, megavitamin therapy, and vigorously pursued obtaining a physician referral which is flatly denied by Ben's psychiatrist. She persisted until she found another physician who would accommodate her. Kate presented this narrative episode as outside the bounds of her relationship with John, a matter requiring her to contend with physicians, who are the representative gatekeepers. Her narrative does not address her son's perspective or volition throughout her account until the conclusion, when she noted that he chose to discontinue the alternative therapy after a few weeks. She did not make it apparent why. Ben's 73 narrative, jointly or individually, never raises this episode, but he did note awareness of his mother's scepticism about his medication, contrasting her view with his own hope in its effectiveness. He appeared to have accommodated his mother's interest in this instance, but not long after did not sustain what he may not have been invested in. Kate described more effective participation in the planning process in relation to interaction she initiated, which tended to be more spontaneous. Impromptu office visits and phone calls were much preferred means of input versus formal team meetings. The latter were less responsive to her interests, and did not represent sources of "real information, " which seemed to equate with more specific insights into Ben's condition. Kate observed a pivotal turn that in her eyes denoted the beginning of recovery for Ben. She noted his initiative in attending groups on the hospital ward when she learned of his interest in a young woman who arrived as a patient: When this girl took an interest in him and Ben responded then I began to think about recovery [. . J so that was really hopeful. Then he started going to just little day program things where this girl was, you know, bingo or something, I don't know, something that was being offered at the hospital, that he started going to. Kate's sense of her son's recovery progress shifted from emphasis on an external treatment agent that she identified - originally medical intervention, later when its limits are apparent megavitamin therapy - to an observation of what appears to be a natural therapeutic process intrinsic to Ben's own interest, the company of a young woman. The importance of Ben's social world is a dominant element in the social worker's recovery discourse. He emphasized the relevance of identifying Ben's interests, even encouraging him to dream a bit, which John explained as a means to "draw him out": 74 . . . once you can build a relationship and some rapport is just to ask well, you know, I know right now that, you know, that, that might be hard to think about five years from now, what would your girlfriend look like? And so, you 're planting the seed that a relationship is possible and, looking at what they would look for to, within that relationship [. . .] so that's part of his experience. Um, and, and so just drawing some of those things out. John's narrative reinforced beginning with rapport, identifying interest and imagination, then moving into the concrete through translation into purpose and goals. His narrative portrayed a steady reinforcement of Kate's role as a contributor towards these ends. His working relationship with Kate was linked in this way to his primary therapeutic orientation to her son. He sounded out her observations, and responded to her concerns as they approached important care-related decisions, again relating to her as a "secondary voice " around related assessment and planning interactions. He appeared to apply his discourse around youth self-determination as a shaping element towards Kate's participation. Her narrative demonstrated increasing alignment with this orientation through the recovery period. 75 CHAPTER V - DISCUSSION Ben's narrative authority and the triadic level of analysis When I initially contemplated possibilities for research design to explore the family member/clinician working alliance, I had to consider whether or not the inquiry would address the youth's perspective directly as a participant. At first such inclusion appeared of interest, but seemed perhaps just outside the focus of the research. The longer I sat with the question and discussed it with colleagues, it became more apparent that youth participation was critical. Exploring a question about the effectiveness of a working alliance is a very relative issue in this context. I came to see more clearly that the youth's perspective is elemental to understanding not only how family involvement unfolds, but also how it is experienced and in some way evaluated by the youth. From a systemic point of view the participants were involved in a triadic set of relationships that needed to be appreciated as a whole. Multiple perspectives were achieved by including all three participants - youth, family member and social worker - in the primary clinical triangle. Their respective contributions to the narrative of illness and recovery reflect the challenges unique to their different roles: "Each given story is, in turn, embedded in a complex network of reciprocally influencing narratives. Individuals, families, and larger collectives inhabit this system of multiple stories and organize their lives around making decisions in accordance with the dominant narratives" (Sluzki, 1999, p. 219). Evidence of a family/professional working alliance can be drawn from investment of the social worker and parent in constructing a shared narrative around understanding illness and recovery that supports joint action. Stern et al. (1999) note that this shared construction is not a given, nor sustained from a single effort, since serious mental illness 76 presents a long-term challenge: "Illness narratives are constantly being renegotiated, depending on changing perspectives and other changes in the illness process" (p. 367). Although the social worker's rehabilitative discourse and the psychiatric institutional context are powerful shaping forces in the construction of a recovery path, Ben's narrative voice provided an authoritative reference point grounded in his exclusive subjective understanding of the illness experience. His caregivers' support efforts in the outer world needed to reconcile with his inner reality. Ben's narrative contribution drew repeated emphasis to the shape and force of the illness experience and how profoundly he is affected. Kate and John's accounts as caregivers are challenged to reconcile their concepts of recovery with Ben's portrayal of the power and persistence of this force. Despite the plethora of research into the neuroscience of receptor sites and such like, there is little certainty about the cause and action of psychosis as a phenomenon. It is also considerably variable amongst individuals. Ben is our only guide, then, through this terrain. His story of illness and recovery does not resolve into a straightforward ending suggestive of a state of "cure." In both joint and individual interviews he acknowledged his increased ability to manage everyday life, but still emphasized that he is frequently "in a lot of pain. " He even despaired, " . . . sometimes it doesn 't seem like I've recovered at all. " He had to learn to painstakingly appreciate the value of being able to manage in the external world while his subjective experience was prey to depression and types of oppressive perceptual phenomena he will never be able to fully convey to others. Despite the communication challenge, Ben's narrative demonstrates powerful descriptions and 77 accounts of how his life has been affected. His account helps us begin to appreciate what it means to engage with the "support" of others. Open accessibility and informality The illness invoked a significant change in Ben and Kate's relationship. Her narrative expressed the understandable parental urge to be protective and helpful as his coping deteriorated. Kate's narrative revealed the challenge she faced in seeking out how to be helpful. She expressed the hope of finding ways to improve her communication with Ben and discovering "something he really needed. " Through the most acute phase of the illness, both Kate and Ben noted the toll exacted by the illness on his ability to relate to others. The family member and social worker shared some elements of a common purpose oriented around relationship-making in the context of a radical disruption to the youth's social availability. Through the acute phase Kate attempted to reconnect with Ben through persistent visits and John engaged in establishing rapport and some initial goal-orientation with him. Understanding John's close involvement in her son's care, Kate sought John out to voice her concerns, gain insight and puzzle over her son's condition. Two qualities were evident in narrative descriptions that helped set the conditions for a collaborative relationship between the family member and social worker. First, John maintained open accessibility, and Kate valued the ability to contact him as needed to consult and raise concerns. She initiated contact on an impromptu basis through phone calls or office drop-ins during arduous hospital visits. Access to John's observations and views as a professional caregiver perhaps presented a means to understand her son under 78 such stressed circumstances and cope with her grief. Gleeson et al. (1999) reiterate the importance of accessibility and support to families after initial detection of psychosis: Anecdotal evidence suggests that the biggest challenge for families at this point is to process new information about the illness and its treatment while coping with symptoms of grief and acute stress disorder. This underscores the point that many family members need repeated access to information, together with opportunities for emotional support (p. 389). Kate identified such contacts as far more beneficial than formal team meetings she had attended. She clearly favoured communications that stemmed from her own questions and initiatives. Formal meetings did not offer her the kind of fresh or insightful information she considered relevant. Although team meetings that include patients and family members may seem to promote their involvement, it is debatable as to how well their interests are served in such an orchestrated, professionally dominant context. This leads to the quality of informality, which is perhaps linked to accessibility. Kate characterized John as relaxed, gentle and approachable. She particularly saw him as a professional she was comfortable to share her views and observations with, that John valued her contributions. This appears to reflect qualities of the "appreciative ally" noted earlier (Madsen, 1999). Kate noted that such open and respectful demeanour had not always been her experience with medical professionals. Her observations of John's relaxed and good-humoured approach to building rapport with her son also appeared to have built good faith and reassurance in Kate's outlook on her working relationship with John. Conversation with a purpose Recovery support as represented by Kate and John's collaboration is a journey that shifts between active support - assistance in managing basic life affairs - and efforts to 79 stimulate Ben's application of personal agency in the world. The caregivers, both formal and informal, must deal with Ben's ambivalence as he is faced with navigating in the outer world while his inner world is traumatized. This engenders a paradox at times for those in a supporting role: how to motivate another's initiative without imposing one's own agenda. Much of John's narrative appeared organized around this question. He frequently referenced a rehabilitative discourse focused on goal-setting and youth self-determination. As such he articulated his role as a social worker. This became more vivid when he described how he sought to engage Ben in speculative exploration of his social interests and possibilities. He pursued this as an informal dialogue with Ben, what Abels and Abels (2001) have referred to in narrative practice as "a conversation with a purpose." These interactions illustrate his apparent intention to stimulate Ben's imagination and ability to resume his participation in the world. In fact, during the individual interview John explained that in these explorations with Ben he hoped to inspire a "new narrative " in terms of Ben's sense of identity and life potential. He described an intention to move beyond the medical assessment of Ben's status to supporting his renewed engagement in some meaningful social dimensions. He noted the limiting nature of routine practice by medical staff who oriented their interactions with Ben around symptom and medication monitoring, reifying identification with the illness and his patient status. The goal-setting focus provided a means to exercise his imagination and abilities. Madsen (1999) describes this as emphasizing "competence over pathology." 80 John and Kate shared an overlapping purpose in this respect. She hoped for her son's return to his life projects; his periods of withdrawal and inactivity were cause for anxiety and grief. Much of her interaction with professionals was oriented around a search for the information and means to support some turnaround. As a parent she was looking for practical strategies that make a difference. Her collaboration with John demonstrated reciprocal interaction towards this end. John simultaneously played a role in integrating Kate's inclusion in decision-making and supporting the youth's ability to manage independent decision-making. John reflected to Kate that pacing and autonomy are related. He emphasized the value of incremental steps into the social environment in directions that Ben chose and reflected his "readiness." John shaped Kate's participation in Ben's recovery through reference to self-determination, self-efficacy and timing. This was exercised as much through referral to a family support education group the worker co-facilitates as through one to one encounters. John recognized that Kate was the primary source of support for her son and encouraged her referral to the group. The group appears to have allowed her an opportunity to explore how other parents approached issues around support and self-determination: Kate: The people that came there, you know, I found the men were sort of um, more hard, hard-hearted about the whole thing, you know, whip that kid into shaped, and you know all he needs is da-ta-da-ta-da and there was one man like that in the group, but at the end of the group his opinions were softening, and you know, towards his son, yeah, it was for the family of the ill person. DO: Yeah. Kate: Yeah, it was really good, I was anxious to get here every week to go to the meetings, yeah. 81 CHAPTER VI - IMPLICATIONS FOR PRACTICE, POLICY & FURTHER RESEARCH Narratives and collaborative practice Although this study was not designed to derive results for the purpose of generalizing, it has given me a rich opportunity to reflect on my social work practice in the field of mental health. Research employing narrative phenomenology has impressed me with the power of exploring lived experience through stories. Storytelling has the potential to illuminate the meanings, values and beliefs individuals assign to actions and complex events. The multiple perspectives of participants in this study have deepened my understanding of the issues at play in the construction of collaborative relationships in family practice. As a result of participating in this research I developed a greater appreciation for the value of a collaborative stance in response to youth affected by psychosis and their family members. The nature and severity of how psychosis manifests and affects the lives of individuals varies tremendously. Recovery steps need to be sensitively attuned to the interest and capability of the youth. Participants revealed that it requires committed, persistent dedication to understanding the unique nature and effect of this illness on an individual and what it means to be "ready" in terms of recovery steps. White (1992) describes a collaborative therapeutic stance as one of mutual consultation that supports people to ". . . experience themselves as more of an authority on their own lives, their problems, and the solution to these problems" (p. 17). Doueck (2003) observes Francis Bacon's adage that 'knowledge is power' and urges a policy and practice orientation towards its positive use: 82 . . . knowledge should be used constructively to help all partners in care - client, professional and carer. Sharing knowledge creates better multi-disciplinary working and facilitates collaboration between involved parties and effective advocacy for client and carer (p. 121). A working alliance can evolve when mental health practitioners recognize that each participant - youth, family member and clinician - has special knowledge to contribute to this effort. Bernheim (1990) considers it a critical assumption that "the great majority of families are motivated to be of service to their impaired members" (p. 101). She also notes the importance of recognizing the significant knowledge that family members develop from coping with a relative affected by serious mental illness. It was evident in this inquiry that the family member was highly motivated to gain information and share her own understandings. Consistent with these premises, collaborative practice is founded on respect for clients' knowledge and resources, a consultative stance, and a working assumption that separates the person from the problem. Consultation in this context is reciprocal in nature. Each participant in the clinical triad is a source of important observation and experience. Open, accessible communication allows the perspective of each participant to inform and influence how the recovery path is constructed. The findings also reinforced an understanding that by definition a practitioner is not solely responsible for making collaborative relationships work. The effectiveness of the working alliance in this study resulted from the mutual investment of all participants. The youth was open to family involvement and his mother was highly proactive in her engagement with program staff. Poulin et al. (2000) articulate the role of the social worker in recognizing such strengths: 83 Look for strengths and abilities and expect to find them. It is your job to help clients identify and articulate the knowledge and skills that they bring to the helping process. Recognizing these strengths helps foster collaborative worker-client relationships by increasing clients' willingness to engage in the helping process, (p 18) Transparency A practitioner serving as a primary therapist on this path needs to be clear about the discourse she/he is representing. In this study I was impressed by the social worker's clarity about his practice orientation informed by principles of social work and psychosocial rehabilitation. His interest in understanding the fuller personhood of the youth and exploring his social interests and capabilities with respect to his vulnerability appeared well-received by the youth and family member. He also placed emphasis on youth self-determination and by making this principle a point of reference appeared to shape the family member's participation in terms of sensitivity to matters of choice and timing. Their working alliance was supported in part by sharing common purpose in seeking to enhance the youth's social competencies. I believe it was also enhanced by the family member's high motivation and the social worker's receptivity to her desire for engagement in the recovery effort. As a therapeutic agent he offered a steady sense of purpose in moving from a focus on symptoms to one of competency. Sluzki (1992) outlines the relational stance involved in such therapeutic shaping: Since stories are located in the shared realm of consensus, therapists guided by these principles will attempt to generate a conversational environment that facilitates shifts of consensus: they will maintain a stance of openness about their intent; they will empathically open themselves to the family's pains and struggles; they will maintain a stance of interest and curiosity about the family's ideas; they will favor an optimistic stance of family connotation; and they will actively contribute to shaping the therapeutic conversation towards changes in the collective story (p. 218). 84 "Openness of intent" means transparency about the principles and methods one brings as a practitioner to the therapeutic relationship, making it possible for discussion, clarification and negotiation. Family practice and organizational context Through this inquiry I was curious to explore the difference to family practice that the context of a specialized hospital program might make compared to the rural community mental health setting I have practiced within. Specialized hospital-based programs tend to identify more resources and expertise with a limited target population, as opposed to community mental health clinics that must address a wide array of needs with less specialized programming. I believe there are structural constraints that do affect practitioners' accessibility in community mental health. However, there are elements of early psychosis intervention principles related to family involvement that are applicable to the community context with proactive leadership. In recent years it seems there has been little emphasis placed on family practice within the current constellation of adult community mental health services. I have witnessed a constriction in mandate and resources such that casework is less preventative and more limited to crisis intervention and more reactive service provision when situations are more seriously deteriorated. The wide variety and intensity of case management demands in this environment make it challenging for practitioners to sustain the ready accessibility and continuity of relationship achieved by participants in this study. I believe part of the cost through this period of contraction has been a piecemeal approach to family involvement, with contacts more oriented around crisis management than proactive planning. 85 I have also had cause to speculate that adult mental health services in British Columbia have suffered from the loss of their child and youth mental health counterparts subsequent to a major transfer of this program out of core mental health services and into the Ministry of Child and Family Development under the former provincial NDP government. Locally, our adult teams had previously enjoyed their significant focus on family practice and benefited from opportunities for therapeutic collaboration, particularly with families. Their transfer significantly diminished this type of collegial partnership, and I observed family work reduced as a priority within adult services. In contrast, early psychosis intervention programming developed over the past decade has supported a more wholehearted service commitment to family involvement. It was apparent to me through observing the EPI outpatient services that having a treatment team devoted to a very specific target population created more optimal conditions for practitioners to facilitate family involvement. EPI programming is also one of the most preventative-oriented mental health services. Emphasis is placed on the link between early intervention and improved recovery prospects. Conferences and workshops held in the Lower Mainland are now consistently involving youth and family members in the facilitation of presentations, giving them more of an opportunity to share their first-hand experiences. The presence of EPI programming may be finally seeding more generalized interest within mental health services in family practice. Vancouver Mental Health Services is currently preparing a report on serious mental illness and family involvement that has involved surveys and focus groups with family members and clinicians. Atwood (1990) has identified practice principles for family involvement in response to youth 86 psychosis that are applicable to more generalized community mental health services. She asserts the importance of making a commitment to family involvement by integrating family caregiver participation into treatment planning from the outset. At the same time she notes the practitioner's primary responsibility to establishing a therapeutic alliance with the youth affected by psychosis. Policy and leadership can support a greater emphasis on family involvement in mental health services. Provision of more training opportunities for collaborative family practice would elevate the priority of this service dimension. Findings in a study on the staff utilization of training in a form of family practice in serious mental illness by Fadden (1997) also revealed that training needs to be reinforced by leadership and the organizational culture. They found that worksites which had a cluster of practitioners dedicated to family practice tended to apply skills acquired in training much more consistently than those who were independently applying this modality. He interprets this as stemming from "the importance of creating an environment where staff are aware of the value of working with families" (Fadden, 1997, p. 507). Limitations and further research These results are limited by exploration of a single case study. I found it a complex task to inquire into the multiple perspectives available within an intense set of personal and professional relationships sustained over such a significant and prolonged life episode. Repeated readings of the text continue to bring to light more nuances about the meaning of the illness and recovery experience to participants and how they viewed their relationships over time. 87 Although it is a labour-intensive exercise, a larger sample would allow for greater diversity and some interesting comparison and contrast. For example, the influence of gender could be explored by including the perspectives of fathers or other male family members involved in caregiving, young women affected by psychosis and female social workers. Additional research might also address different structural contexts by seeking out participants from community mental health centres as well as specialized hospital programs. Although this inquiry investigated multiple perspectives related to youth psychosis and family involvement, it did not directly address the influence of other mental health clinicians on the treatment team - the psychiatrist, occupational therapists and psychiatric nurses - who the youth and family member were also involved with. My interest was most closely linked to exploring the role of social work on family involvement in a psychiatric context. Nonetheless, researching the working alliance with other mental health professionals could provide insight into the effects of their respective professional discourses on family involvement. The youth in this study described considerable openness to participation in formal treatment services available. A larger sample and changes in case selection might also address instances where youth are less amenable to formal treatment and parental involvement. The social worker interviewed in this study identified this as a significant variable affecting the nature of family involvement. Further research might address how family members and practitioners manage related tensions. 88 Conclusion Results in this study dramatize the large-scale disruption youth psychosis presents to the course of individual and family life. It faces a parent with the challenge of loss and adaptation. A parental narrative of advocacy can gradually evolve in concert with a professional discourse of recovery when embedded in an openly cultivated relationship with ready opportunities for family participation. This study reveals some of the conditions and relational qualities that make effective participation possible. Despite the current institutional emphasis on technologies of medical intervention, economics and systems efficiencies, the effectiveness of the working alliance with a family member in this study was reflected in the committed joint investment by participants in an ongoing relationship. This is not an area of practice amenable to strict time-limited service. Their collaboration was characterized by accessibility, consultation, recognition of mutual expertise and reciprocity. The clinician openly conveyed an attitude of value and interest in the needs and contribution of the family caregiver, who sought opportunities to advocate for her son's care. Their narratives reflect the development of a shared understanding of the illness experience and the nature of their working relationship negotiated over the initial phases of youth recovery. 89 References Abels, P. & Abels, S. (2001). Understanding Narrative Therapy: A Guidebook for the Social Worker. New York: Springer Publishing. 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The procedures of this research involve participants in two separate interviews: 1. Conducting a joint preliminary interview (approx. 30 minutes) with an early psychosis intervention program clinician, a former client and their family members who had participated in the program to support recovery efforts. The purpose of this short interview is to help define the key events that comprised the phase of initial contact and the formation of a working alliance between the family members and the primary clinician. 2. Conducting separate in-depth, semi-structured individual interviews (approx. 90 minutes each) with the family member(s) who had participated in the program as involved caregivers, the youth and his/her primary mental health clinician. Refreshments will be provided. Participation in this research is entirely voluntary. Interviews will be audiotaped and later transcribed into typewritten form. Participants will have the opportunity to review typewritten transcriptions, and may receive a copy of the audiotapes if requested. Names and/or other identifying features will not be identified in written transcriptions, drafts or final reports. This research is part of the graduate course requirements for Social Work 554C and will be published as part of a graduate thesis in the UBC School of Social Work & Family Studies. Copies of the results of this study, upon its completion, will be made available to participants. If you have any questions about the project, and/or would like to participate, please contact David O'Brien (tel: 604-221-4899; e-mail: patt.obrien@telus.net) at the earliest convenience. If you have any questions about research participant rights and related standards you may contact the Research Subject Information Line in the UBC Office of Research Services at 604-822-8598. 03/15/04 99 This research is part of the graduate course requirements for Social Work 554C and will be published as part of a graduate thesis in the UBC School of Social Work & Family Studies. We are asking you to sign this form to indicate that you understand the following: 1. You are being asked to participate in two interviews conducted in March/April 2004, and your participation in this research is entirely voluntary. 2. The initial joint meeting with family members and former clinician will be approximately 30 minutes long, and subsequent separate interviews will be approximately 90 minutes long. Separate interviews involve: 1) the former client of the Early Psychosis Intervention Program; 2) his/her family member(s) who had participated in the service and 3) the primary clinician. 3. These interviews will be audiotaped and later transcribed into typewritten form. 4. You will have the opportunity to review typewritten transcriptions, and may receive a copy of the audiotapes if requested. 5. You may decline to answer any question, and may stop the interview at any time for any reason. 6. You may withdraw from the research project at any time. 7. Your name and/or other identifying features will not be identified in written transcriptions, drafts or final reports. They will not be divulged to protect your confidentiality and anonymity. 8. Research materials like audiotapes and transcripts will be held in a secure location and will not be publicly accessible. 9. The final written report will be published in a UBC School of Social Work & Family Studies graduate thesis. 10. Copies of the results of this study, upon its completion, will be made available to participants. If you have any concerns about your treatment or rights as a research subject, you may contact the Research Subject Information Line in the UBC Office of Research Services at 604-822-8598