Family caregiving and symptom management of schizophrenia in rural China

Abstract

This dissertation focuses on the social context of rural China to examine the predictors of caregiving burden and the long-term impacts of family caregiving on the symptom management of persons with schizophrenia (PwSs). This research is comprised of five studies and it uses mixed methods. The first four studies were quantitative, using secondary data from the Chengdu Mental Health Project (CMHP) in Xinjin, Chengdu, China. In Study I and Study II, the analytic sample included 300 dyads of PwSs and their family caregivers. Study I aimed to model the associations between severity of symptoms, caregiving burden, and perceived social support of PwSs. In the final model, instrumental social support was found to be positively associated with social interaction and increased subjective social support. Increased subjective social support was correlated with less severe psychotic symptoms, which was related to a lower burden. Study II was conducted to further identify the specific illness-related stressors across the different kinship types. A heavier burden was found to be significantly associated with female caregivers, a larger family size, lower income, more severe symptoms, poorer functioning, and more aggressive behavior. Study III assessed the longitudinal impacts of caregiver transition and quality of caregiving on the illness status of PwSs. The analytic sample included 250 PwSs who were investigated in 1994 and 2015 in the CMHP. More severe symptoms were significantly predicted by older age and non-married status of the PwSs at the baseline. A higher degree of psychosocial functioning was predicted by marital status, shorter duration of illness, and better mental status. PwSs who received good care in both time periods had better psychosocial functioning than those without caregivers. After excluding 25 PwSs without caregivers, Study IV analyzed the remaining 225 PwSs and their caregivers to measure the predictors of caregiving burden. Younger age of the PwSs was found to predict a higher level of caregiving burden among all families. Meanwhile, among families without caregiver transition, a lower burden was found to be related to a smaller family size, less severe symptoms, deteriorated functioning of ‘social activities outside household’, and better functioning of ‘activity in household’ in PwSs. Among families with caregiver transition, married status of PwSs and better self-care functioning were found to be significant protective factors against a heavier caregiving burden. Finally, Study V was a qualitative study that was based on face-to-face individual interviews with 20 family caregivers of PwSs. This study mainly explored how caregivers appraised and coped with illness-related encounters, how they became involved in the symptom management of PwSs, how the caregiver-patient relationship changed, and how these elements affected the chronic course of schizophrenia care. Theoretically, this research helps to build an expansive and culturally appropriate model for understanding family caregiving in schizophrenia in rural China. Practically, by understanding the relationship between caregiving-related arrangements and the symptom management of schizophrenia, appropriate strategies for home-based psychiatric care and community services (e.g., family-based and individualized interventions) could be tailored to improve the mental recovery of PwSs and reduce the caregiving-related burden. (499 words)