On October 13, 2023, the ARCH National Respite Network and Resource Center provided recommendations to the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) to include research on respite and caregiving in its Draft 2024-2028 Long-Range Plan that establishes future research priorities.
Given that at least 60-75 percent of adults with developmental disabilities live at home with family, ARCH feels that NIDILRR should include specific mention of the need for research focused on family caregiver outcomes as a result of supportive, person and family-centered interventions, including respite. A significant number of these family caregivers are over age 60 (over 716,200 older caregivers) and face their own challenges, including age-related functional declines and concerns about what will happen to their relatives when they can no longer provide care.
ARCH cited the work of its Committee for Advancement of Respite Research to establish the pressing need for a more research on family caregivers and the interventions, including respite, that support them and allow them to continue providing ongoing support to their family members. ARCH also strongly encouraged more research on, and evaluation of, culturally adapted and linguistically competent respite and family support interventions that result in positive family caregiver outcomes among diverse populations, especially with marginalized and underresourced groups.
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