Family members' experiences and perspectives of relapse in first-episode psychosis

Presentation First Author: 
Shalini Lal

Background: Rates of relapse are alarmingly high in young people diagnosed with a first-episode psychosis (FEP). The majority (82%) will experience a relapse of FEP within the first five years of illness. Even when patients are treated in specialized early intervention programs, rates of relapse, although significantly lower, are a substantial barrier to recovery. While family members are often considered as critical sources of support for individuals experiencing mental illness, little is known about their experiences and perspectives on the subject of relapse. Such knowledge can help to inform the development of relapse assessment and prevention strategies and tools.

Objective: The objective of this study was to gain an in-depth understanding of relapse as understood and experienced by family members of young people receiving services for a FEP.

Methods: A qualitative approach, using focus group methods, was used to elicit subjective experiences, understandings, and knowledge of relapse in FEP. Family members were recruited from four specialized early intervention programs for psychosis in Canada. A total of 24 (6 male, 18 female) family members, with a mean age of 49.6 (s.d. 8.7) participated in the focus groups.

Results: The findings are organized under three core themes: worrying about relapse; observing for signs of change; and needing more communication and support. Participants expressed constant fear and preoccupation about relapse. They described having limited confidence in their ability to recognize relapse due to not noticing the warning signs preceding the first episode and not being able to discern signs of relapse from personality, normal behaviour, recovery, and wellness. They described observable changes in behaviour, function, and physical status as potential warning signs for relapse. They also expressed a need for more frequent and ongoing communication with service providers and peers to support their roles as caregivers in the prevention of relapse.

Conclusions: The findings indicate that relapse can be a highly prevalent concern for family members accompanied by fear and anxiety. Lack of relapse focused education, support, and communication on an ongoing basis can contribute to family members’ limited confidence in recognizing and responding to relapse. The findings highlight the important role of peer support and communication with service providers in assisting family members in early recognition and response to relapse as well as addressing their psychosocial needs as caregivers. This study can inform the development of relapse prevention tools and interventions for families.

Conference Name: 
Date of Presentation: 
10th Oct 2015
Type of presentation: 
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