The period of untreated psychosis before treatment initiation: A qualitative study of family members’ perspectives. Comprehensive Psychiatry, 49(6), 530-536

Department of Behavioral Sciences and Health Education, Rollins School of Public Health of Emory University, Atlanta, GA 30322, USA.
Comprehensive psychiatry (Impact Factor: 2.25). 11/2008; 49(6):530-6. DOI: 10.1016/j.comppsych.2008.02.010
Source: PubMed


This study used a qualitative research methodology to explore common themes pertaining to the period of untreated psychosis before treatment initiation in hospitalized, urban, African American, first-episode psychosis patients.
Twelve family members of 10 patients were interviewed at length to gather detailed narrative accounts of factors related to untreated psychosis and treatment delay. Using qualitative analysis, verbatim transcripts were reviewed by 2 researchers to identify prominent themes useful for generating future research hypotheses.
Four themes emerged as informative of the period of untreated psychosis before treatment initiation: (1) misattribution of symptoms or problem behaviors (eg, depression, drug use, and adolescent rebellion), (2) positive symptoms causing unusual or dangerous behaviors that served as a catalyst for initiating treatment, (3) views about personal autonomy of an adult or nearly adult patient, and (4) system-level factors (eg, unaffordability of health care and inefficiency on the part of health care providers).
Family members encountered numerous barriers when seeking treatment, including their own misattributions, the nature of the patient's symptoms, financial issues, and system-level delays. The themes uncovered in this formative analysis merit further exploration with additional qualitative and quantitative research.

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Available from: Nancy J Thompson, Mar 24, 2014
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    • "These include poor individual, familial and community education about the signs and symptoms of psychosis, reluctance to accept stigma-laden diagnoses and the pervasive mistrust of mental health services within the general community [10-13]. High thresholds for inclusion amongst overly-stretched services, apathetic rather than curious health professionals and poor intra and inter organisational communication have also been laid to blame [14-16]. "
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    ABSTRACT: Long duration of untreated psychosis (DUP) is associated with poor outcomes and low quality of life at first contact with mental health services. However, long DUP is common. In order to inform initiatives to reduce DUP, we investigated service users' and carers' experiences of the onset of psychosis and help-seeking in two multicultural, inner London boroughs and the roles of participants' social networks in their pathways to care. In-depth interviews were conducted with service users and carers from an early intervention service in North London, purposively sampled to achieve diversity in sociodemographic characteristics and DUP and to include service users in contact with community organisations during illness onset. Interviews covered respondents' understanding of and reaction to the onset of psychosis, their help-seeking attempts and the reactions of social networks and health services. Thematic analysis of interview transcripts was conducted. Multiple barriers to prompt treatment included not attributing problems to psychosis, worries about the stigma of mental illness and service contact, not knowing where to get help and unhelpful service responses. Help was often not sought until crisis point, despite considerable prior distress. The person experiencing symptoms was often the last to recognise them as mental illness. In an urban UK setting, where involved, workers in non-health community organisations were frequently willing to assist help-seeking but often lacked skills, time or knowledge to do so. Even modest periods of untreated psychosis cause distress and disruption to individuals and their families. Early intervention services should prioritise early detection. Initiatives aimed at reducing DUP may succeed not by promoting swift service response alone, but also by targeting delays in initial help-seeking. Our study suggests that strategies for doing this may include addressing the stigma associated with psychosis and community education regarding symptoms and services, targeting not only young people developing illness but also a range of people in their networks, including staff in educational and community organisations. Initiatives to enhance the effective involvement of staff in community organisations working with young people in promoting help-seeking merit research.
    Full-text · Article · Sep 2011 · BMC Psychiatry
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    • "Absence of a family history of psychosis or prior exposure to psychiatric illnesses (Chen et al., 2005; Norman et al., 2006; Schimmelmann et al., 2007; Verdoux et al., 1998), lower levels of knowledge and awareness of mental illnesses (deHaan et al., 2002; Phillips et al., 1999; Tirupati et al., 2004), inclination to deny the existence of a mental illness (Johannessen et al., 2001; McGlashan, 1999), lower aptitude in tolerance and coping (Chong et al., 2005; Larsen et al., 1996; Yamazawa et al., 2004), and poorer family strengths (Goulding et al., 2008) may be potential determinants of DUP. Parental uncertainty over potentially symptomatic behaviors, self-reported caregiver burden, and the parents' view of their children as autonomous adults have been suggested as potential predictors of prolonged DUP (Czuchta and McCay, 2001; Bergner et al., 2008). Many of these studies report preliminary results, and most have not directly assessed family members who were actively involved in initiating care for first-episode patients. "
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    ABSTRACT: Little is known about how family-level factors are associated with duration of untreated psychosis (DUP), especially in ethnic/racial minority groups, such as African Americans. This study involved African American first-episode patients and their family members who initiated evaluation and treatment for them. It was hypothesized that a longer DUP would be predicted by family members' endorsement of: (1) less knowledge about schizophrenia, (2) greater perceptions of stigma, (3) lower levels of insight, (4) fewer family strengths, (5) more limited family coping capacity, and (6) lower levels of caregiver strain. From a sample of 109 patients, 42 African American patients with family-level data were included. Cox proportional hazard models quantified associations between family-level predictors and DUP, and analyses controlled for effects of three previously determined patient-level predictors of DUP - mode of onset of psychosis, living with family members versus alone or with others, and living above versus below the federal poverty level. The median DUP was 24.5 weeks. Greater family strengths and a better family coping capacity were associated with a shorter DUP, whereas higher insight among informants and greater level of perceived caregiver strain were associated with a longer DUP. Whereas family strengths and coping likely account for a significant portion of variability in DUP, both insight and caregiver strain probably evolve as a consequence of DUP. Efforts to strengthen families and tap into existing strengths of families in specific cultural groups would likely enhance early treatment-seeking for psychotic disorders.
    Full-text · Article · Oct 2009 · Schizophrenia Research

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