Caregiving of children with intellectual disabilities in China - an examination of affiliate stigma and the cultural thesis

Abstract

Background: While caregivers of children with intellectual disabilities are burdened in every part of the world, it is suspected that particular contexts may make the situation worse. There is little literature on caregivers in China, where familial and clan responsibility rather than individual effort is emphasised, and where communal support, while treasured, is often lacking. Method: A total of 211 caregivers in two cities, one with and the other without randomised design, participated in a survey study that assessed affiliated stigma, loss of face, anxiety, mental health and empowerment. Results: A proportion of 60.6% of participants were found to be conspicuous cases with mental disturbance of a level which required further professional attention. Participants with better resource appeared to have coped better, enjoying lower psychological distress, lower anxiety and a higher level of personal empowerment. Multiple regression analysis revealed that mental health is related to the affective dimension of affiliated stigma, loss of face and anxiety level. This was found to account for more than half the variance (55%). Discussion: The subjective burden of care occurs not in isolation but in a cultural field. Chinese caregiving is characterised by a lack of formal support, and such cultural concerns as loss of face and strong affiliated stigma. This socio-political context makes caregiving all the more challenging. The situation has to be addressed by both practitioners and policy makers if family caregiving is to be valued and made sustainable. © 2012 John Wiley & Sons Ltd, MENCAP & IASSID.