Service user and carer experiences of seeking help for a first episode of psychosis: a UK qualitative study

Abstract

BackgroundLong 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.MethodIn-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.ResultsMultiple 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.ConclusionEven 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.

Self-help interventions for psychosis: A meta-analysis

“…Self-help interventions overcome many of the practical barriers that are associated with face-to-face therapies including the costs of therapy, transportation difficulties and issues with childcare or caring for sick or disabled loved ones (Mohr, Hart, & Howard, 2006;Mohr et al, 2010). However, P r e P u b l i c a t i o n C o p y one potential barrier to the uptake of interventions (likely including self-help interventions for psychosis) is the stigma associated with mental health (Barney, Griffiths, Jorm, & Christensen, 2006;Corrigan, Larson, & Rusch, 2009;Schomerus & Angermeyer, 2008;Tanskanen et al, 2011;Vogel, Wade, & Hackler, 2007). There is; however, evidence to suggest that interventions that are explicitly designed to tackle such concerns can increase uptake (e.g., Sheeran, Aubrey, & Kellett, 2007) and such ideas might usefully be incorporated into self-help interventions (for an illustrative example, see Varley, Webb, & Sheeran, 2010).…”

“…For example, not knowing that a given set of symptoms warrants medical attention, or the misattribution of symptoms to other factors such as stress or substance misuse can make seeking out the correct support difficult (Gillard et al, 2010;Tanskanen et al, 2011). One potential solution is to provide feedback on symptoms in an effort to promote knowledge and such ideas have recently been incorporated into a self-directed eHealth intervention for those with depression and anxiety (Lillevoll, Vangberg, Griffths, Waterloo, & Eisemann, 2014).…”

Características Sociodemográficas E Psiquiátricas De Pacientes Admitidos No Centro De Atenção Psicossocial

“…Estudo qualitativo inglês identifica várias barreiras para a busca do tratamento imediato para o primeiro episódio psicótico, como preocupações com o estigma da doença mental, desconhecimento de quais serviços de saúde procurar, busca de atendimento em situações críticas, dificuldade do paciente de reconhecer os sintomas como transtorno psiquiátrico, falta de tempo, conhecimento ou habilidade de trabalhadores de organizações comunitárias para realizar contato com os serviços de saúde (5) . Entre as principais situações de crise que também enfrentam os familiares com pacientes com transtorno psicótico e suas necessidades de atenção psiquiátrica são a própria crise psicótica do familiar, a crise familiar diante do diagnóstico e do processo de aceitação do transtorno e as crises diante das subsequentes recaídas (6) .…”

The Need-Adapted Approach in Psychosis: The Impact of Psychosis on the Treatment and the Professionals

“…In a German focus group study (Angermeyer, Schulze, & Dietrich, 2003) the professionals were important sources of the "double stigma" experienced by relatives of patients diagnosed as having schizophrenia: they themselves suffered from public images of mental illness and the abusive psychiatric practices applied to the psychotic family member. The experiences of primary caregivers with regard to clinicians' responses seem to be contradictory (Askey & Gray, 2009;Gerson et al, 2009;Hultsjo, Bertero, & Hjelm, 2009;McCann, Lubman, & Clark, 2011Tanskanen et al, 2011). All in all, from research on the positive and negative experiences of carers it appears that they need to be sensitively listened to by professionals who are willing to act like human beings; they also need individually based information, knowledge of where to seek help, recognition of their contribution to the treatment, and organizational flexibility.…”

“…22 ma, sometimes resulting in symptoms of posttraumatic stress disorder (Askey & Gray, 2009;Barton & Jackson, 2008;Loughland et al, 2009). The relatives themselves face prejudice and stigma (Addington & Burnett, 2005;Hultsjo, Bertero, & Hjelm ,2009;Read & Magliano, 2012;Sin, Moone, & Harris, 2008) occasionally resulting in isolation (McCann, Lubman, & Clark, 2012), barriers to help-seeking (Tanskanen et al, 2011), or problems in co-operating with professionals (Gerson et al, 2009). In a German focus group study (Angermeyer, Schulze, & Dietrich, 2003) the professionals were important sources of the "double stigma" experienced by relatives of patients diagnosed as having schizophrenia: they themselves suffered from public images of mental illness and the abusive psychiatric practices applied to the psychotic family member.…”