Abstract
BackgroundFamily caregivers play crucial roles in taking care of people experiencing schizophrenia in the community. The burdens on and needs of caregivers of these patients should be emphasized. This study aimed to explore the perspective of family caregivers of people experiencing schizophrenia in the communities of Beijing in terms of the burdens of care and the acquisition and further need for support in order to provide guidance to health care providers regarding how to target therapeutic interventions for families of individuals experiencing schizophrenia and to provide recommendations for policy makers to tailor countermeasures and services.MethodsA total of 20 family caregivers of schizophrenia patients were enrolled in our study. A face-to-face and semi-structured in-depth qualitative interview study was conducted to explore the caregivers’ perspective on the burden on caregivers, support and further needs. This study was conducted in the community health service centres where the family caregivers regularly visit. The study was carried out according to good ethical practices, data analysis and reporting guidelines.ResultsMost participants reported that they were suffering from heavy life burdens and had negative experiences with respect to obtaining social support, and they emphasized that they would require more support. Economic and daily housework burdens, limited social communication, and psychological stresses were the principal burdens. Support including financial, medical and information and educational support did not satisfy the needs of the caregivers and their patients. More financial support, respect, and rehabilitation institutions were reported to be needs of the caregivers.ConclusionsFamily caregivers of people experiencing schizophrenia suffer from heavy physical and psychological burdens; however, the current support provided is insufficient. More services and better public attitudes should be considered for people experiencing schizophrenia and their caregivers.
Highlights
Caregivers play crucial roles in taking care of people experiencing schizophrenia in the community
There are 7.16 million people who have suffered from schizophrenia during their lifetime in China [6]
Social support and professional support are essential solutions to alleviate the burdens of caregivers dealing with people experiencing schizophrenia [18]
Summary
Caregivers play crucial roles in taking care of people experiencing schizophrenia in the community. Family caregivers of people experiencing schizophrenia experience significant stresses and have a high level of burden [11]. These huge burdens include physical discomfort, disturbed routine habits, tension, violence, chronic sorrow, enormous stigma, role changes, social withdrawal, and financial/career difficulties, usually with a lack of resources and support [12,13,14,15]. Heavy burdens and inadequate support might cause caregivers to become unable to undertake the responsibilities of caring for these patients [11] Understanding such burdens is important for the development of efficient interventions and the rationalization of health-care resource allocation [5]. The “Family-to-Family Support Program” [21], psychoeducation programmes [22], and mutual support groups for family caregivers [23] have generated positive outcomes for patients and their family caregivers
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