Systematic review (meta-aggregation) of qualitative studies on the experiences of family members caring for individuals with early psychosis

Abstract

Despite the importance of the role of caregivers of people with psychosis being widely recognized, comprehensive understanding of their experience is limited. A thorough understanding of the experience of caregivers over the journey of the illness, particularly during its early stages, is crucial. Qualitative studies published between 1 January 1949 and 31 January 2018 were obtained from seven databases based on PICo search strategy. Meta-aggregation methodology of the Joanna Briggs Institute (JBI) was adopted to aggregate existing qualitative findings about caregivers’ experiences. Twenty-eight qualitative studies on 635 caregivers and family members were included in the review. Six inter-related categories—‘stigma’, ‘help-seeking’, ‘service encounter’, ‘emotional challenges’, ‘on becoming a caregiver’ and ‘making sense of experience’—were aggregated from 129 themes from the sub-acute stage, the acute stage and the recovery or residual stage. Three statements about caregivers’ experiences of their relative’s first episode of psychosis were synthesized from the findings. Results highlighted the need of incorporating caregiver intervention into the existing services to support the emotional challenges, uncertainty, and stigma-related burden along the caregiving journey.