Currently submitted to: JMIR Formative Research
Date Submitted: Jun 4, 2026
Open Peer Review Period: Jun 5, 2026 - Jul 31, 2026
(currently open for review)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Development and Initial Testing of a Long-Term Care Planning Tool for Family Caregivers of Individuals With Intellectual and/or Developmental Disabilities: Formative Research
ABSTRACT
Background:
Long-term care (LTC) planning is challenging for individuals with intellectual and/or developmental disabilities (IDD) and their caregivers. It also lacks a concrete framework. The Preparation for Future Care (PFC) model has been used to describe advanced care planning for older adults and may apply to individuals with IDD.
Objective:
This study uses the PFC model to understand LTC planning for this population and applies this understanding to development of an LTC digital planning tool to support family caregivers.
Methods:
We conducted semi-structured focus groups in five states with family caregivers of individuals with IDD regarding LTC planning. We applied the Framework Method analysis using PFC as potential nodes. Informed by focus groups and a pre-existing care planning website for seniors, we developed a planning tool to support LTC planning for this population. We then conducted a pilot study to assess the feasibility and acceptability of the digital planning tool.
Results:
A total of 61 family caregivers participated in focus groups. Analysis revealed that LTC planning progressed in accordance with PFC. Four sub-nodes (advocate, finances, housing, and medical management) were identified, which served as a foundation for website development. A pilot study (n=4) was conducted to assess feasibility. Average total usability (measured by the SUS) was high (M=80.6, SD=16.7, range 57.5-97.5) indicating that participants found the tool easy to use.
Conclusions:
The PFC model was found to be an appropriate framework for understanding LTC planning and intervention development. The framework was further used to build the Map Our Life website. Once established a formative usability evaluation deemed the digital planning tool to be feasible and acceptable by caregivers of individuals with IDD.
Citation
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