Developing a Health-Related Quality-of-Life Measure for People with Intellectual Disability

Autor/inn/en	Clark, Lauren; Pett, Marjorie A.; Cardell, Elizabeth M.; Guo, Jia-Wen; Johnson, Erin
Titel	Developing a Health-Related Quality-of-Life Measure for People with Intellectual Disability
Quelle	In: Intellectual and Developmental Disabilities, 55 (2017) 3, S.140-153 (14 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1934-9491
DOI	10.1352/1934-9556-55.3.140
Schlagwörter	Intellectual Disability; Quality of Life; Adults; Interviews; Participatory Research; Community Involvement; Focus Groups + Suchen Sie Ihr Suchwort? Intellect; Disability; Disabilities; Verstand; Behinderung; Lebensqualität; Interviewing; Interviewtechnik; Forschungstätigkeit
Abstract	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. (As Provided).
Anmerkungen	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/
Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2020/1/01