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Decision-making regarding transitions to residential care for people with intellectual disabilities and their family caregivers
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Date
2026-02-05
Authors
Egan, Caroline
Journal Title
Journal ISSN
Volume Title
Publisher
University College Cork
Published Version
Abstract
Aim:
To gain insight into decision-making during a transition to residential care for people with intellectual disabilities and their family caregivers.
Background:
People with intellectual disabilities often experience a residential transition in mid to later life. These are shaped by ageing-related challenges, caregiver capacity, and systemic factors such as policy and services. Residential transitions are challenging, frequently marked by a loss of autonomy. Despite extensive literature on ageing with an intellectual disability, there remains a gap in understanding the lived experience of decision-making during residential transitions.
Method:
Two literature reviews informed this study: A concept analysis, clarified the concept of transitioning to residential care, and a scoping review synthesised evidence on shared decision-making during residential transitions. These reviews revealed limited attention to the experiences of decision-making during a residential transition for people with intellectual disabilities and their family caregivers, highlighting the need for inclusive research that centres their voices.
To address this gap, a qualitative study was conducted using multiperspectival interpretive phenomenological analysis and inclusive research strategies. Ethical approval was obtained from both the university ethics committee and the relevant disability service. To ensure the study was ethical, accessible, and inclusive, Patient and Public Involvement (PPI) was embedded in the design process. A purposeful sample of six family dyads (six people with intellectual disabilities and six family caregivers) were recruited. Individual interviews were conducted and analysed using multiperspectival interpretive phenomenological analysis, focusing on how participants experienced and made sense of transitional decision-making.
Findings
The findings offer valuable insight into both the shared and individual experiences of people with intellectual disabilities and their family caregivers during residential transition planning. The first set of experiential themes were identified through a dyadic, multiperspectival interpretive phenomenological approach. The themes ‘Things are changing’ captured the uncertainty and reluctance to plan within the dyad for future transitions. ‘Standing in solidarity’ reflected the relational dynamics where caregivers either involved the person in, or shielded them from, distressing conversations and decision-making based on perceived capacity and emotional readiness. Across both themes decision-making was shaped by empathy, solidarity and a desire to avoid causing distress within this close relationship.
A re-analysis of the data generated a second set of experiential themes, identifying the precipitating experiences that prompted the caregivers to apply for residential care. These findings deepen understanding of decision-making and planning by revealing how personal, relational, and systemic factors interacted to shape family experiences. Two experiential themes are presented. “Transitions in caregiving: navigating losses and gains” described the pre-transition phase, where caregivers faced life changes such as bereavement, ageing, and evolving responsibilities, experiencing both loss and growth. “Navigating family challenges during caregiving transitions” spotlighted how family dynamics and constrained statutory services impacted this period. The findings highlighted a lack of policy and service provisions to support families through these transitions.
Conclusions
This research provides new insights into family decision-making during transitions to residential care for people with intellectual disabilities. It revealed patterns of avoidance, protective shielding, and the limited involvement of individuals with intellectual disabilities in decisions directly affecting their lives, raising ethical concerns around autonomy and self-determination.
Decision-making was often driven by necessity rather than choice, shaped by emotional, relational, and systemic factors. Despite existing national and international policies, their impact remains limited without robust and accessible, person and family centred supports and services.
The research contributes theoretical, methodological, and empirical knowledge, calling for person-centred relocation models, integrated supports, and proactive planning frameworks. It also highlights the urgent need for a formalised, well-funded service model for ageing with intellectual disabilities. Addressing these challenges requires systemic change to ensure that policies translate into meaningful lived experiences for people with intellectual disabilities and their families.
Description
Keywords
Caregiver , Decision-making , Future planning , Intellectual disability , Transition
Citation
Egan, C. 2026. Decision-making regarding transitions to residential care for people with intellectual disabilities and their family caregivers. PhD Thesis, University College Cork.