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3. Qualitative Research with Families of First Episode and Prodromal Patients
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3 qualitative research with Families of First episode and prodromal patients Ruth Gerson and Cheryl Corcoran Introduction Psychotic illness takes a toll on patients and their families, particularly the first onset of psychosis, which has been described as a “bewildering nightmare” (Gur and Johnson, 2006). Symptoms begin in adolescence and early adulthood, and are insidious and initially non-specific. Young people may not recognize the changes they are experiencing as symptoms of mental illness or may find it difficult to talk about their experiences and instead withdraw from others (Boydell, Gladstone, and Volpe, 2006; Judge, Estroff, Perkins, and Penn, 2008). They may believe that their experiences are “normal” or “just the way I was” or attribute them to stress or medical illness (Judge et al., 2008), and this explanation may be more common in minority patients (Commander, Cochrane, Sashidharan, Akilu, and Wildsmith, 1999). Although family members also may attribute the young person’s behaviour and experiences to non-psychiatric etiologies (Judge et al., 2008), it is typically families who seek help for young people experiencing these emerging symptoms (de Haan, Peters, Dingemans, Wouters, and Linszen, 2002; de Haan, Linszen, Lenior, de Win, and Gorsira, 2003; de Haan, Welborn, Krikke, and Linszen, 2004; Gamble and Midence, 1994; Rose, 1996; Tuck, du Mont, Evans, and Shupe, 1997). Family members can also discourage help seeking, if they attribute the patient’s behaviour to nonpsychiatric etiologies (Judge et al., 2008) or they have had negative experiences with mental health treatment in the past (Compton, Kaslow, and Walker, 2004; Diala et al., 2000). Given the importance of family during the early stages of illness, understanding the experiences of families of young people with emerging psychotic symptoms can be valuable in clarifying the phenomenology of evolving illness. 45 46 ruth gerson and cheryl corcoran Since families can play a crucial role in the path to treatment, engaging them may improve access to care for young adults experiencing newonset psychosis. This is particularly important in light of the finding that young people with new-onset psychosis frequently go untreated for over a year (Perkins, Gu, Boteva, and Lieberman, 2005). This period of untreated psychosis is associated with significant psychosocial morbidity, poor selfesteem , and disruptions in academic and vocational achievement that are difficult to reverse (Addington, Leriger, and Addington, 2003; Tohen et al., 2000), as well as with worse long-term outcomes (Addington, Van Matrigt, and Addington, 2004; Perkins et al., 2005). Untreated psychotic symptoms can also increase the risk of suicide and victimization (Lincoln and McGorry, 1995). In addition, the cognitive deterioration seen in chronic schizophrenia appears to occur predominantly in this early period (Harrison et al., 2000). Qualitative research with families is important for understanding the behavioural manifestations of early stages of psychotic disorders and for discerning what is helpful to these young individuals and their families. Qualitative Methods The qualitative research methods we have employed in our studies with families were developed by Larry Davidson and his colleagues. This qualitative approach, inspired by the work of Edmund Husserl, avoids bias by prioritizing the voices of participants directly, without questionnaires or criteria, and by eliciting subjective definitions of experiences as embedded in the social context (Davidson, 1994; Fossey, Harvey, McDermott, and Davidson, 2002). Interviewers aim to approach each interview de novo and without bias or preconceived notions, putting out of mind the content and material of previous interviews. An open-ended approach is taken, such that the interviewers are careful not to make assumptions about the statements of their interlocutors and instead to ask clarifying questions. Interviews are unstructured in that the family member leads the dialogue. Specific topics are kept in mind by the interviewer as subjects to be queried at some point in the interview, but it is not necessarily done sequentially. In the qualitative research studies we have done with family members of both prodromal and recent-onset psychosis patients, the specific topics kept in mind included: • whatchangeswereperceivedintheyoungperson; • howfamiliesrespondedtothesechanges; • whatwashelpful(ornot)inaddressingthesechanges;and • whatfamiliesanticipatedforthefuture. [3.237.178.126] Project MUSE (2024-03-28 19:33 GMT) Qualitative research with faMilies of first ePisode and ProdroMal Patients 47 Interviews were audiotaped and transcribed. Subsequently, each member of the research team individually reviewed each transcript, noting and listing themes that arose during the interviews. As with the conduct of the interviews themselves, investigators aimed to approach each transcript de novo in appraising...