Identifying key components of a web-based long term care planning intervention for family caregivers of individuals with intellectual/developmental disabilities.

This is a qualitative study of caregiver views, so it cannot show whether a web-based planning tool changes long-term care planning, caregiver strain, or access to services. The results rely on caregiver proxy reports; individuals with intellectual or developmental disabilities were not included in these findings, even though separate focus groups with them were held. The sample was mostly female, white, higher-income, and college-educated, and non-English speakers were excluded, so the findings may not reflect low-income, minority, or multilingual families. Participants were recruited through health systems and organisations in five states, and the focus groups were small, so the themes may not generalise to all family caregivers. The caregivers described people with substantial daily living support needs and problem behaviours, and many needed constant supervision, which may differ from families of people who are more independent. Feedback was collected after participants were shown two existing websites, so their suggestions may have been shaped by those examples.

The only declaration provided is funding from the Patrick and Catherine Weldon Donaghue Medical Research Foundation.

Do not read this as evidence that a web-based long-term care planning tool works. It reports what caregivers said they wanted and what barriers they described, not outcomes from a tested intervention.