People with intellectual/developmental disabilities (IDD) experience alarmingly high rates of
mortality, morbidity, and acute care utilization compared to those without an IDD,
particularly during emergencies. Caregiver health and well-being is a determinant of health
outcomes for people with an IDD. Yet, caregivers are aging and frequently experience high
caregiver burden and poor well-being. Poor preparedness and planning lead to crises and harm,
including emotional trauma, unsafe living conditions, unwanted emergent nursing home
placements, and potential early mortality, for both people with an IDD and their family
caregivers.
The goal of this study is to promote health emergency preparedness and long-term care (LTC)
decision-making among individuals with intellectual/developmental disabilities (IDD) and
their family caregivers to improve patient- and caregiver-reported health and quality of life
outcomes. Through partnerships with adults with IDD, their families, IDD community
organizations, and IDD services agencies, the investigators seek to conduct a randomized
controlled trial comparing the effectiveness of Map Our Life - a web-based future planning
intervention and enhanced usual care (EUC) - care coordination services vs. an attention
control (AC) and EUC on health promotion for people with disabilities and their family
caregivers. Aim 1 will compare the effectiveness of Map Our Life +EUC vs AC+EUC on family
caregiver support and well-being at 1, 6, and 18 months. Aim 2 will examine the comparative
effectiveness of Map Our Life +EUC vs. AC+EUC on planning behaviors and communicating future
preferences for LTC planning, and its mediating effects on family caregiver support and
well-being at 1, 6, and 18 months. Finally, aim 3 will identify how individual and caregiver
need factors and access to services and supports moderate intervention treatment effects at 6
and 18 months from the perspective of the individual with IDD and separately from their
caregiver.
We will conduct a national, multi-site, two-arm, randomized controlled trial (RCT) of primary
family caregivers of individuals with IDD. A total of 1050 family caregivers will be
randomized 1:1 to one of 2 treatment arms: (1) enhanced usual care plus a web-based future
planning intervention, Map Our Life; and (2) attention control website plus EUC. Primary
participants will be family caregivers of individuals with IDD who are at least 18 years old
living in community settings recruited from stakeholder groups, Northwell Health (New York),
Christiana Care Health System (Delaware), Baylor College of Medicine (Texas), Children's
Hospital of Philadelphia (Pennsylvania), Cincinnati Children's Hospital Medical Center
(Ohio), and Geisinger Health (Pennsylvania). Primary outcomes include caregiver burden and
caregiver wellbeing. Secondary outcomes include adequacy and satisfaction with services and
supports, well-being and planning choices of adult care recipient with IDD, and planning
behaviors and communication of plans. Participants will complete surveys at the time of
enrollment and at 1-, 6-, and 18- months post enrollment.
