Families' Experience With Seeking Treatment for Recent-Onset Psychosis

Abstract

Objective Qualitative research methods were used to understand the experiences of families seeking treatment for young people with recent-onset psychosis; such knowledge can inform services design. Methods The authors conducted open-ended interviews in 1999 through 2002 with family members of 13 patients with recent-onset nonaffective psychotic disorders in the New York metropolitan area, focusing on their experience in seeking treatment and engaging with mental health services. Results Family members described early lack of clarity of diagnosis and obstacles to obtaining treatment. Entry into the mental health system frequently occurred in the context of crisis, with African-American families specifically reporting police involvement. Inpatient hospitalization was depicted as traumatic yet offering relief. Aftercare was described as fragmented, and issues with third-party payers were paramount. Families expressed a desire for more education, information, and support and described their struggles with stigma. These data from families are presented in the context of more recent literature as to the efficacy of specialized treatment programs for early stages of psychotic disorder and their involvement of families. Conclusions These qualitative research data support the importance of involving and educating families about psychosis: its recognition, its treatment, and access to services. They also highlight the need to address stigma and implement structural changes in treatment that ensure continuity and coverage of care. Specialized first-episode psychosis services may address these issues, and they may minimize the traumatic experiences of involuntary hospitalization and police involvement early in treatment.

The Common Elements of treatment engagement for clinically high‐risk youth and youth with first‐episode psychosis

“…Table 1 provides more information about the methods of each study. 12,13,[27][28][29][30][31][32][33][34][35][36][37][38] The second literature search targeted RCTs (i.e. 'CHR/FEP RCTs') evaluating psychosocial interventions, with or without pharmacotherapy, for CHR youth/young adults or youth/young adults with FEP.…”

“…CHR/FEP engagement study sample (n = 13) Corcoran et al30 and Gerson et al31 report data from the same sample; hence, these articles were coded together. Age refers to age of CHR/FEP youth/young adults.…”

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

“…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.…”

“…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.…”

“…There is abundant evidence that the family members of psychotic persons have difficult and complex emotional experiences, including difficulties in accepting the situation, looking to the future, and changing roles within the family (Addington & Burnett, 2005;Addington et al, 2003;Askey & Gray, 2009;Gerson et al, 2009;Hultsjo, Bertero, & Hjelm, 2009;Read & Magliano, 2012;Read & Seymour, 2013;Sin, Moone, & Harris, 2008). Many carer-relatives have encountered at least moderate aggression and trau-3…”