OSU RRTC NIDILRR: Listening to People with Intellectual and Developmental Disabilities in Health Research --Study 1A

Principal Investigator(s): View help for Principal Investigator(s) Susan Marie Havercamp, Ohio State University; Jill Hollway, Ohio State University

Version: View help for Version V1

Name	File Type	Size	Last Modified
RRTC_study1a_cognitive_interview_data.xlsx	application/vnd.openxmlformats-officedocument.spreadsheetml.sheet	40.6 KB	09/22/2023 06:54:AM
RRTC_study1a_data_dictionary.xlsx	application/vnd.openxmlformats-officedocument.spreadsheetml.sheet	15 KB	09/22/2023 06:57:AM
RRTC_study1a_demographics.xlsx	application/vnd.openxmlformats-officedocument.spreadsheetml.sheet	17.4 KB	09/22/2023 06:54:AM

Project Citation:

Havercamp, Susan Marie, and Hollway, Jill . OSU RRTC NIDILRR: Listening to People with Intellectual and Developmental Disabilities in Health Research --Study 1A. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2023-10-11. https://doi.org/10.3886/E186001V1

Project Description

Summary: The purpose of Study 1: Measures is to adapt and refine current measures on mental health, physical health, and general well-being and quality of life for adults (18+) with Intellectual and Developmental Disabilities (IDD) in order to increase their health outcomes and participation in health research. The adaptations being made are designed to enhance the cognitive accessibility of these measures for persons with IDD so that they are more understandable and accessible to adults with IDD. These adaptations will also allow for greater utility across research and clinical settings, thereby producing measures that are more relevant to adults with IDD and allow for greater self-report and inclusion of this population in health research.

There is an urgent need for development and validation of cognitively accessible measures of mental and physical health and well-being in order to help individuals with IDD be more active participants in health care research and participate in their own health care. We have identified three key areas of need regarding development and validation of cognitively accessible instruments: mental health, health-related quality of life (HRQL), and physical health. This project will work to select, adapt, and validate cognitively accessible self-report measures in each of these three areas.

Objective (Study 1A): Assess modification needs of the Diagnostic Interview for Adolescents and Adults with Intellectual Disability (DIAAID) structured interview schedule, the Function Neutral Health-Related Quality of Life (FuNHRQL) self-report survey, and the PROMIS Profile self-report survey with 8 adults with IDD and their caregivers/support persons (N=16 study participants) in order to adapt these instruments for the adult (18 years and up) with IDD population. Also administer two proxy measures to caregivers. One of these proxy measures is a Demographic Survey to collect general medical and mental health histories of the adult with IDD. In instances where the adult with IDD is 40+ years of age, a Proxy Neurocognitive Disorders Screening Questionnaire will also be administered to caregivers/support persons in order to rule out dementia as a confound in accurate mental health assessment of the adult with IDD.

Funding Sources: National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) (90RTHF0002-01-00)

Scope of Project

Subject Terms: Developmentally Disability; mental health; self report

Geographic Coverage: Ohio

Time Period(s): 9/6/2019 – 10/4/2019 (Fall 2019)

Collection Date(s): 9/6/2019 – 10/4/2019 (Fall 2019)

Universe: Adults (18+) with intellectual disabilities; caregivers (18+) of adults with intellectual disabilities

Data Type(s): aggregate data; observational data

Collection Notes: The following grant funding acknowledgement should appear with every publication:

The contents of this (insert type of publication; e.g., article, presentation, book) were developed as part of a Rehabilitation Research and Training Center (RRTC) on Health and Function awarded to The Ohio State University (OSU) Nisonger Center through a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90RTHF0002-01-00). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (DHHS). The contents of this (insert type of publication; e.g., article, presentation, book) do not necessarily represent the policy of NIDILRR, ACL, or HHS, and you should not assume endorsement by the Federal Government.

Methodology

Sampling: Convivence sampling through Ohio State University networks such as on site clinics.

Collection Mode(s): face-to-face interview; on-site questionnaire; paper and pencil interview (PAPI)

Scales: The adapted FuNHRQL) PROMIS scales used 3-point Likert scale ("Almost Never," "Sometimes," "Almost Always")

Weights: N/A

Unit(s) of Observation: Individuals

Geographic Unit: State

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Published Versions

V1 [2023-10-11]

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