Aging parents of adult children with intellectual disability face many barriers when planning for the future care of their children

Walker R & Hutchinson C. 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 Journal of Intellectual & Developmental Disability. 2018; 43(4): 453-462.

Review question

•    What are aging parents’ perceptions of future care arrangements for their adult children with intellectual disability and to what extent have they made future plans for the care of their adult children?

Background

•      Globally, the life expectancy of individuals with intellectual disability is increasing as a result of improvements in health care and social conditions.

•      For example, over 40% of individuals with Down syndrome are now living to at least 60 years of age. The increased longevity among people with intellectual disability (and among the general population) means that more people will be ageing with intellectual disability in tandem with their family caregivers (usually their parents).

•      Therefore, it is increasingly important to understand the perceptions and concerns of aging parents about their unique caregiver role, as well as determine ways to best support aging parents to make plans for when they need to relinquish their caregiver role.

•      This systematic review was conducted to explore aging parents’ perceptions of future care arrangements and the extent to which they have made future plans for their adult children with intellectual disability.

How the review was done

•      A literature search was conducted in two databases: Web of Science and PsycINFO. All articles published between 2000 and 2015 were eligible for inclusion.

•      The search was conducted using key terms, such as: intellectual disability, aging, and future planning.

•      In total, 226 articles were initially identified from the search, of which 14 were included in the final review.

•      This systematic review was supported by Flinders University in Australia.

What the researchers found

•      Three themes emerged from the literature: 1) external barriers to planning; 2) internal barriers to planning; and 3) diversity of “plans” and managing the future.

•      Bureaucratic or external barriers seems to affect future planning. For those whose adult children were residing in the family home, the paucity of information, skepticism over the standard of formal services, a lack of options, and a distrust of services and dissatisfaction with the “bureaucracy” were identified as key reasons for not making future plans.

•      Parents also reported feeling like the “system” tended to favour a crisis-driven approach rather than carefully considered plans.

•      Regardless of whether adult children were residing in the family home or living out-of-home, there was a strong sense among parents of internal barriers contributing to their lack of future planning. These included feelings of helplessness, resignation, avoidance, denial and guilt about not planning, and the hope that the issue might just somehow get resolved after their passing. Most parents acknowledged that the need to plan was always in the back of their minds but was often met with a sense of paralysis or inaction due to planning being perceived as too hard to plan.

•      For those who had made plans or begun planning, this included making a will, discussing future plans with another person such as a social worker, verbal agreements with other siblings, as well seeking accommodation. In some cases, parents were hoping that siblings might take on the caregiver role after they died but had not directly discussed the issue with them. Conversely, some parent’s plans explicitly involved not burdening their other children or family members regarding the future care of their children with intellectual disability.

Conclusion

•      Three overarching themes were identified in this review: 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.

•      The review identified a number of methodological issues associated with existing studies, many of which lacked a theoretical framework.