ERIC Number: EJ1144740
Record Type: Journal
Publication Date: 2017-Jun
Pages: 14
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1934-9491
EISSN: N/A
Developing a Health-Related Quality-of-Life Measure for People with Intellectual Disability
Clark, Lauren; Pett, Marjorie A.; Cardell, Elizabeth M.; Guo, Jia-Wen; Johnson, Erin
Intellectual and Developmental Disabilities, v55 n3 p140-153 Jun 2017
Using principles of community-based participatory research we developed a new theory-based measure of health-related quality of life (HRQOL) for individuals with intellectual disability (ID). We recruited adults with ID (n = 129) to take part in interviews and review successive versions of HRQOL items. Critical input about content and understandability shaped the items, as did input from four focus groups of parents/caregivers (n = 16) and representative stakeholders from community-based agencies (n = 7). The resulting HRQOL measure, called the HRQOL-IDD, contains 42 items. The response format depicts a gradient of fluid-filled cups ("none" to "full") to represent frequency of experience of each item on a 5-point scale.
Descriptors: Intellectual Disability, Quality of Life, Adults, Interviews, Participatory Research, Community Involvement, Focus Groups
American Association on Intellectual and Developmental Disabilities. P.O. Box 1897, Lawrence, KS 66044-1897. Tel: 785-843-1235; Fax: 785-843-1274; e-mail: AJMR@allenpress.com; Web site: http://www.aaiddjournals.org/
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A