Quality of Life and Needs of Deaf/Hard of Hearing Caregivers

Gallaudet University, Washington DC

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Linked publications & trials

Abstract

The purpose of the administrative supplement (NOT-AG-18-039) is to expand existing research to include perspectives of DHH caregivers who provide care or assistance to family and friends with AD/ADRD. Current widely used NIH-funded patient reported outcome measurement systems (PROMIS) include domains that assess global, physical, mental, and social health from the patient?s perspective. PROMIS is heavily dependent on English, which is a serious barrier to DHH patients who use American Sign Language (ASL) and demonstrate low English proficiency. We address this knowledge gap through qualitative interview and linguistic translation and validation of BRFSS-Caregiver Module in ASL. The administrative supplement will provide support to interview 40 DHH caregivers and gather BRFSS Caregiver module data from 100 DHH caregivers. This is a traditionally ignored subgroup in aging and caregiving research. The inclusion of DHH caregivers in the parent R01 sample will further increase the generalizability of the results and provide additional group comparison information. The availability of a new BRFSS Caregiver Module in ASL will stimulate future research with DHH aging and caregiver population.