Caregiving dynamics and futures planning among ageing parents of adult offspring with intellectual disability

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    The number of older parents ageing in tandem with their adult children with intellectual disability (ID) is increasing. This unique situation calls for greater research that investigates how older parents experience this extended care-giving role, including the extent to which they are engaging in futures planning. Participants were recruited via disability service providers in South Australia. Using the theoretical perspective of hermeneutic phenomenology to understand lived experiences, semi-structured in-depth interviews were carried out with older parents (N = 17, mean age 70 years). Six offspring were living in the family home while the remainder were in supported accommodation. Main themes to emerge from the data were: (a) perpetual parenting, (b) costs and rewards and (c) planning to plan. Parents were providing care across a range of areas, regardless of whether their offspring lived at home or in supported accommodation. While aware of the need to plan for the future, most did not have a firm plan in place. Parents are providing a high level of support to their adult children with ID regardless of whether they live in supported accommodation or the family home. While some have started to think about future care arrangements, most appear unclear over what the future holds.

    Original languageEnglish
    Pages (from-to)1512-1527
    Number of pages16
    JournalAgeing and Society
    Issue number7
    Early online date2018
    Publication statusPublished - 1 Jul 2019


    • care-givers
    • everyday support
    • families
    • intellectual disability
    • qualitative


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