The burden, support and needs of primary family caregivers of people experiencing schizophrenia in Beijing communities: a qualitative study

Abstract

Background Family 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. Methods A 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. Results Most 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. Conclusions Family 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.

Retrospective Evaluation of the Correlation Between Previous Hospitalizations, the Type of Current Living Space, and Quality of Family Function

“…Previous studies have found that persons living with schizophrenia who were repeatedly hospitalized increased the burden on their families (33). Despite a better public understanding of schizophrenia in recent years, schizophrenia is still widely regarded as shameful for the patients' families and by the Chinese public (34,35). With the increase in the number of hospitalizations, the stigma around the patients and their families will strengthen (36,37).…”

Awareness, utilization and influencing factors of social supports for main informal caregivers of schizophrenia patients: a cross-sectional study in primary care settings in Beijing, China

“…There could be support groups for caregivers run by social workers or health care professionals; education or sharing sessions with physicians on typical symptoms; regular home visits and establishment of day nursing/care or respite care to meet the needs of schizophrenia patients and relieve the burden of main informal caregivers. Sufficient resources should be allocated to vocational training and supported employment for patients who were in non-severe situation or in stable phase [27].…”

Awareness, utilization and influencing factors of social supports for main informal caregivers of schizophrenia patients: a cross-sectional study in primary care settings in Beijing, China

“…Although the government provided multi-channel resources for patients with schizophrenia and their families, the awareness and utilization of social supports were not optimistic. The underlying reasons might be: (1) the workforce of rehabilitation and social care professionals in China was insu cient [22]; (2) funding and other support from national and social institutions for mental illness were limited, and burdensome application procedures and unperfect quota allocations impaired the accessibility of various types of support [23]; (3) stigma and discrimination from the public and even mental health professionals [24,25], and low insurance coverage with high treatment fees created barriers to mental health service utilization [26]; (4) the mutual support groups and psychological counselling provided for caregivers were often considered super cial and impractical [27].…”