Literaturnachweis - Detailanzeige
Autor/inn/en | Beighton, Carole; Victor, Christina; Carey, Iain M.; Hosking, Fay; DeWilde, Steve; Cook, Derek G.; Manners, Paula; Harris, Tess |
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Titel | 'I'm Sure We Made It a Better Study…': Experiences of Adults with Intellectual Disabilities and Parent Carers of Patient and Public Involvement in a Health Research Study |
Quelle | In: Journal of Intellectual Disabilities, 23 (2019) 1, S.78-96 (19 Seiten)
PDF als Volltext |
Sprache | englisch |
Dokumenttyp | gedruckt; online; Zeitschriftenaufsatz |
ISSN | 1744-6295 |
DOI | 10.1177/1744629517723485 |
Schlagwörter | Adults; Intellectual Disability; Parents; Health; Participatory Research; Patients; Foreign Countries; Experience; Attitudes; Cooperation; Outcome Measures; Information Dissemination; United Kingdom (England) |
Abstract | Patient and public involvement is considered integral to health research in the United Kingdom; however, studies documenting the involvement of adults with intellectual disabilities and parent carers in health research studies are scarce. Through group interviews, this study explored the perspectives and experiences of a group of adults with intellectual disabilities and a group of parent carers about their collaborative/participatory involvement in a 3-year study which explored the effectiveness of annual health checks for adults with intellectual disabilities. Thematic analysis identified five key themes consistent across both groups; authenticity of participation, working together, generating new outcome measures, dissemination of findings and involvement in future research. Although reported anecdotally rather than originating from the analysis, increased self-confidence is also discussed. The groups' unique perspectives led to insights not previously considered by the research team which led to important recommendations to inform healthcare practice. (As Provided). |
Anmerkungen | SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: http://sagepub.com |
Erfasst von | ERIC (Education Resources Information Center), Washington, DC |
Update | 2020/1/01 |