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

Background: 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. Methods: 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. Results: 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. Conclusion: 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. Copyright