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.

Keywords: Primary Care; QUALITATIVE RESEARCH; Schizophrenia & psychotic disorders.