JMIR Publications

ABSTRACT

Background:

Nearly three-quarters of the estimated 4.9 million people with intellectual and developmental disabilities (IDD) in the U.S. live with family caregivers, 25% of whom are over 60 years. People with IDD experience disproportionately high rates of mortality, morbidity, and acute care utilization, often due to a lack of accessible, tailored resources to support them throughout the lifespan. Few caregivers engage in long-term care (LTC) planning, often due to lack of information and support.

Objective:

This protocol describes the design and methods of the Future Planning and Well-Being for Individuals with Intellectual Disabilities and Family Caregivers study, a randomized controlled trial evaluating the effectiveness of the Map Our Life web-based LTC planning tool, compared to an attention control website, on caregiver-reported burden, caregiver-reported well-being, and progress in and communication of future plans for the individual with IDD.

Methods:

The Future Planning and Well-Being for Individuals with Intellectual Disabilities and Family Caregivers study is an ongoing national, multi-site, randomized controlled clinical trial with a target enrollment of 1050 family caregivers of individuals with IDD at six sites across the United States. Participants are randomly assigned (1:1) to either the Map Our Life web-based LTC planning tool plus enhanced usual care (MOL + EUC) or an attention control group consisting of a CDC-sponsored health promotion website for people with disabilities plus enhanced usual care (AC+EUC). Primary outcomes, including caregiver-reported burden, caregiver-reported well-being, and LTC planning behaviors, are assessed at baseline, 1, 6, and 18 months. Data will be analyzed using mixed-effects models to accommodate the repeated measures design.

Results:

Recruitment began in December 2023. Data collection is ongoing. Primary outcome analyses will commence immediately following the completion of final follow-up surveys.

Conclusions:

LTC planning is an important component of addressing health disparities among individuals with disabilities and their family caregivers. By focusing on using an innovative and accessible tool for LTC planning, the study addresses a critical gap in available resources with the potential to improve quality of life and reduce caregiver burden. Clinical Trial: This study is registered on ClinicalTrials.gov (NCT06065527).