Internalized Stigma among Family Caregivers of People with Intellectual Disabilities in Mainland China: An Example of Kaifeng City

Abstract

The family caregivers of people with intellectual disabilities (ID) are not burdened merely by material stress (e.g. financial and housing burdens) but also by stigma directed towards their relatives with ID and their own family groups. There is limited literature on internalized stigma among family caregivers (ISFC), especially in mainland China, where mianzi culture (i.e. social face) and social norms are emphasized. The main objectives of this study were to: (1) provide general and descriptive information about the demographic characteristics and psychological states in a sample of family caregivers who take care of individuals with ID in Mainland China; (2) probe the cultural underpinning of the internalized stigma experiences among family caregivers of individuals with ID in mainland China; (3) identify the effect of mianzi concerns and ISFC on emotional- and mental-health problems (i.e. anxiety and psychological distress) among caregivers in mainland China; and (4) test the mediation role of ISFC in the association between mianzi concerned and mental health among family caregivers of individuals with ID in Mainland China.

This study employed mixed research methods, including a survey and individual interviews. A total of 120 primary caregivers of people with ID in Kaifeng city, central China, participated in the survey phase. They were assessed for ISFC, mianzi, anxiety, and psychological distress. Of these caregivers, ten people participated in sequential interviews to provide supplementary information for quantitative results.

A conceptual framework was developed, which could explain the effects of cultural stigma on emotional and mental health problems among Chinese family caregivers. ISFC was found to be inextricably interwoven with mianzi value in the Chinese context, explaining 40% of the variance in mental health problems that deserved attention. ISFC as an induced psychosocial state was found to be partially shaped by mianzi culture. Caregivers with higher mianzi concern were found more likely to internalize feelings of shame, and they suffered higher levels of distress and anxiety. Fathers, low-SES group, and onset-before-birth group were identified as groups vulnerable to stigma that require more attention in future studies. In addition, qualitative study showed that feelings of shame, self-blame and powerlessness were important elements in ISFC. Other cultural values, such as kinships and fatalistic beliefs, could also moderate caregivers' affection, cognition, and behaviour. Subjectively, caregiving burdens were found to result from cultural sensibility instead of objective isolation in the Chinese context. This highlighted culture-sensitive issues concerning caregivers’ mental health in social policy and public services.

Date of Award	Aug 2013
Original language	English
Supervisor	Simon CHAN (Supervisor)