EAMHID.
Caregivers of ageing adults with both vision loss and ID face a standing conflict between independence goals and comfort needs.
01Research in Context
What this study did
Researchers interviewed 31 caregivers of ageing adults who have both vision loss and intellectual disability.
The team asked about tough choices the caregivers face every day.
Only early results are shared; full themes will come later.
What they found
Caregivers feel torn between helping the adult stay independent and keeping them comfortable as bodies weaken.
No clear answer exists; the conflict stays open.
How this fits with other research
Franke et al. (2026) mapped 125 papers and showed that families want autonomy, person-centred care, and stigma-free clinics.
The new interviews echo those values, but add the twist of failing eyesight and growing frailty.
Bouck et al. (2016) watched support workers negotiate autonomy for adults with ID around diabetes tasks day by day.
The 2025 study widens the lens: once vision fades and age sets in, the same daily negotiation turns into an unsolved moral dilemma.
Why it matters
You may write plans that push skill building. These caregivers warn that, for ageing clients with dual sensory loss, safety and comfort can trump independence.
Ask the family what independence means now, not five years ago. Update goals together each quarter.
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Join Free →Open the care plan and ask the caregiver, "Which matters more this month: doing the task alone or feeling safe while doing it?" Write the answer in the goal notes.
02At a glance
03Original abstract
Background: Decline in functioning, due to ageing, of persons with visual and intellectual disabilities can result in an increase of complex care needs. Ageing can lead, for example, to frailty, chronic health conditions and an increase in dependency. Healthcare professionals, on the other hand, are trained to stimulate independency and participation in society, values that are embedded in the UN Convention on the Rights of Persons with Disabilities. As a result, caring for ageing persons with a visual and intellectual disability may come with a conflict in values. For example, should caregivers stimulate participation or rather comfort an ageing client with increasing frailty? However, to date, the moral dilemmas caregivers may face and which values they find important in the care of ageing persons with a visual and intellectual disability are not reported. Therefore, the aim of this study is to examine these moral dilemmas and values.<br/><br/>Method: Using a qualitative method, 31 semi-structured interviews were conducted with relatives (n=15) and healthcare professionals (n=16) of ageing persons with a visual and intellectual disability, including both specialists in ethics (like chaplains) and generalists in ethics (other healthcare professionals). The interviews were recorded and transcribed verbatim. The data were analysed in Atlas.ti, using a thematic approach (Braun and Clarke 2022). In this study, the recommendation of a three-round Delphi study (Okoli and Pawlowski 2004) is followed: (1) to identify moral dilemmas, (2) to narrow down the number of moral dilemmas and (3) to find consensus on which dilemmas are most important. This study is preregistered at OSF: https://doi.org/10.17605/OSF.IO/9GBMW.<br/><br/>Results: At the end of the study, we aim to have an overview of common moral dilemmas, important values and themes in the care of ageing persons with a visual and intellectual disability. Preliminary analysis of the first round has identified a number of moral dilemmas caregivers face in the care of the ageing client. For example, should caregivers focus on health or prioritize the quality of life of an ageing client with health issues? At the conference, the full thematic analysis of the first round will be presented.<br/><br/>Conclusions: The results will provide insight into the most common moral dilemmas and themes in the care of ageing persons with a visual and intellectual disability. Moreover, the results contribute to a better understanding of when caregivers face a contrast in values, what is decisive when making a choice and which values they find important in the care of the ageing client.<br/><br/>References<br/>Braun, V., & Clarke, V. (2022). Toward good practice in thematic analysis: Avoiding common problems and be(com)ing a knowing researcher. International Journal of Transgender Health, 24(1), 1–6.<br/>Okoli, C., & Pawlowski, S. D. (2004). The Delphi method as a research tool: An example, design considerations and applications. Information and Management, 42(1), 15–29.
Journal of intellectual disability research : JIDR, 2025 · doi:10.1111/jir.70044