“Worried about relapse”: Family members’ experiences and perspectives of relapse in first-episode psychosis

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Abstract

Background

The purpose of this study was to gain an in-depth understanding on the subject of relapse from the perspectives of family members of young people receiving services for a first-episode psychosis (FEP).

Methods

A qualitative descriptive approach, using focus group methods, was used to elicit experiences, understandings, and knowledge of relapse in FEP. Family members were recruited from 4 specialized early intervention programmes for psychosis in Canada. A total of 24 (6 male, 18 female) family members participated in the study. Thematic analysis was used to examine the data.

Results

The core underlying theme in all focus groups was worrying about relapse, which was often accompanied by significant levels of fear and anxiety, and was influenced by: (1) impact of an episode of psychosis; (2) limited confidence in recognizing and coping with relapse; (3) unmet needs for coping skills and emotional support and (4) unmet needs regarding frequency and continuity of communication with clinicians.

Conclusions

Family members’ unmet needs for relapse-focused education, support and communication with service providers and peers, can have a negative impact on relapse prevention. Addressing family members’ education and support needs in a tailored manner (including preferences for types of peer support) can contribute positively to their confidence and ability to recognize and respond to relapse. This can help reduce fear and anxieties about relapse, and positively influence the ability to function as caregivers. Future research should focus on best approaches for providing education, sustained contact with the clinical team and family peer support.

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