Caregiving Experience for Children with Intellectual Disabilities among Parents in a Developing Area in China

By utilizing grounded theory methodology, this study attempted to fill a gap whereby little research explored family caregiving perspectives in China where public support is insufficient and familial responsibility is highly valued.

Data were collected through the qualitative methods of interviews and observations among a purposive sample of 15 parents of children with intellectual disabilities in central China.

The central idea emerging from the data encompassed five broad categories of caregiving experiences: (i) unavoidable caregiving responsibility and (ii) uncertain future as the greatest worries which are the perception towards the recipient; (iii) compromising quality of life and (iv) positive roles of caregiving tasks which focus on the self; and (v) community support which is the perceived support from the external system.

A recursive relationship existed among these categories. Chinese culture and traditional beliefs dominated throughout these issues. The implications and limitations of this study were discussed.