Caregiving experiences of family caregivers of patients with schizophrenia in a community: a qualitative study in Beijing

Abstract

Objectives This study aims to understand the caregiving experiences of family caregivers of people with schizophrenia in a community. Design A qualitative study based on phenomenological analysis was conducted through in-depth interviews. Setting This study was carried out from May to June 2023 in two community health service centres in urban Beijing, China. Participants We selected 16 family caregivers for interviews using purposive sampling method. Results Four themes and 10 subthemes were identified: (1) psychosocial distress of family caregivers (feeling unprepared and helpless at the beginning, confronting negative emotions in long-term care and straying away from social life); (2) adverse impacts on the whole family (poor cooperation within the family, insufficient family involvement in professional care); (3) coping with family caregiving (accepting the reality of the patients’ illness, struggling with family life balance and having realistic expectations); (4) concerns about future care (daily living support, physical health management). Conclusion Family caregivers experienced psychosocial distress and family stress in the process of caregiving. They had to cope with caregiving stress and were concerned about the long-term care of people with schizophrenia. These findings provide implications for intervention programmes to strengthen social support, family involvement, and active coping for caregivers and develop long-term care mechanisms for people with schizophrenia.