Perceived benefits and negative impact of challenges encountered in caring for young adults with intellectual disabilities in the transition to adulthood

Background This study investigated the perceived benefits and negative impact associated with stressful events and chronic caregiving demands encountered by parents caring for young adults with an intellectual disability in the period of transition to adulthood. Methods A sample of 119 parents of young adults described these outcomes in a questionnaire, which were then analysed using qualitative content analysis. Results Although parents identified a range of negative outcomes, they also reported positive outcomes (perceived benefits) in relation to stressful events and chronic demands encountered in this period, including personal growth and enhanced personal resources. Conclusions The language of stress and burden often used to describe parents' experiences during the period of their son or daughter's transition to adulthood, needs to coexist with a language of fulfilment, growth and gain, as used by parents themselves. The implications of these findings, in relation to professional interaction with and support of parents in this period, are discussed.