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<p>In India, ageing parents of adults with intellectual and/or developmental disabilities (IDD) face intense ‘succession worry’ about who will care for their children after they die, yet this issue remains largely hidden and under-researched. Using Interpretative Phenomenological Analysis (IPA), 28 parents (25 mothers, 3 fathers) from Palakkad district, Kerala, whose adult children attended BUDS Rehabilitation Centres, were interviewed in depth about their future-care anxieties. Findings revealed a core process: living with unresolvable succession worry, an ongoing moral and temporal bind where present caregiving anchors parents to ‘eternal child’ dependence while haunting visions of abandonment. Four themes were emerged: (a) Facing the inevitability of lifelong dependence, (b) Pinning fragile hope on siblings, (c) Grasping at culturally shaped strategies that collapse and (d) Carrying the worry alone, in silence. This study underscores that succession worry among ageing parents of adults with IDD in rural Kerala is profound. Despite awareness of future care needs, most parents remain trapped in inaction, with no concrete plans in place, perpetuating a cycle of dependency and anxiety. The persistent daytime support from BUDS centres provides temporary relief but highlights the urgent need for integrated, scalable lifelong solutions to transform this chronic anxiety into actionable security for adults with IDD and their families.</p>

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“Who Will Take Care of My Child After Me?’’ The Uncertainty of Future Care of Adults with Intellectual and/or Developmental Disabilities

  • 期刊论文

  • 发表日期：

    2026年3月4日

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  • Amrutha P,
  • Sathyamurthi K

摘要

In India, ageing parents of adults with intellectual and/or developmental disabilities (IDD) face intense ‘succession worry’ about who will care for their children after they die, yet this issue remains largely hidden and under-researched. Using Interpretative Phenomenological Analysis (IPA), 28 parents (25 mothers, 3 fathers) from Palakkad district, Kerala, whose adult children attended BUDS Rehabilitation Centres, were interviewed in depth about their future-care anxieties. Findings revealed a core process: living with unresolvable succession worry, an ongoing moral and temporal bind where present caregiving anchors parents to ‘eternal child’ dependence while haunting visions of abandonment. Four themes were emerged: (a) Facing the inevitability of lifelong dependence, (b) Pinning fragile hope on siblings, (c) Grasping at culturally shaped strategies that collapse and (d) Carrying the worry alone, in silence. This study underscores that succession worry among ageing parents of adults with IDD in rural Kerala is profound. Despite awareness of future care needs, most parents remain trapped in inaction, with no concrete plans in place, perpetuating a cycle of dependency and anxiety. The persistent daytime support from BUDS centres provides temporary relief but highlights the urgent need for integrated, scalable lifelong solutions to transform this chronic anxiety into actionable security for adults with IDD and their families.