Planning for the future among older parents of adult offspring with intellectual disability living at home and in the community: a systematic review of qualitative studies

Background: The increased longevity of individuals with intellectual disability means that ageing parents often play an extended caregiving role into late life. This systematic review evaluates qualitative evidence on futures planning among older parents whose adult children live either in the family home or out-of-home. Method: Electronic databases were searched for studies published between 2000 and 2015. Studies that met the inclusion criteria were analysed using the McMaster Critical Review Form for Qualitative Studies. Results: Of 14 articles reviewed, quality was mixed. Three over-arching themes emerged: (1) external barriers to planning involving reservations about available services; (2) internal barriers preventing parents from planning such as mutual dependency and sense of helplessness; and (3) existence of diverse “plans” and ways of managing the future. Conclusions: Parents are aware of the need to make plans or at the very least have preferences for what they would like to occur. However, a range of external and internal factors pose as barriers to this process.