Culture and stigma: Social exclusion of families of children with cerebral palsy in China

There are 6 million children with cerebral palsy in China and 70% of affected families are living in poverty. Raising a child with cerebral palsy encompasses social stigma which places affected children and their families at a disadvantage resulting in extraordinary hardship. The cultural meanings, expression, and results of stigma regarding cerebral palsy vary across cultures. However, there have been no studies specifically examining the role of cultural values as they relate to stigma associated with cerebral palsy.

Our study utilizes the ethnographic approach to examine the experience of raising cerebral palsy children in China. The established stigma model for China is used to examine how “loss of face,” a distinctive cultural value, functions as a physical, emotional, social and moral force in shaping the daily lives of affected children and their caregivers.

Snowball sampling was utilized to recruit 15 mothers who were primary caregivers for a child with cerebral palsy aged 3 – 18 years old. Data were collected using face-to-face interviews in city of Shanghai, Chengdu in China.

Results indicate that the mothers with children of cerebral palsy experience both physical and emotional burdens of caregiving. These mothers live with shame and disgrace which shape their interaction among relatives and extended family members. Mothers with lower education receive less family and social support than mothers with college degrees. Findings also indicate that children of mothers with higher perception of “loss of family face” have less social interactions in the informal settings of neighborhoods and outdoor activities.