Exploring academics' views on designs, methods, characteristics and outcomes of inclusive health research with people with intellectual disabilities : a modified Delphi study
| Autor: | J.V. Meijering, Jenneken Naaldenberg, Tessa K. Frankena, Geraline L Leusink, Mieke Cardol, H.M.J. van Schrojenstein Landman de Valk |
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| Jazyk: | angličtina |
| Rok vydání: | 2016 |
| Předmět: |
Male
030506 rehabilitation Biomedical Research Delphi Technique Delphi method 0302 clinical medicine Surveys and Questionnaires Health care Medicine 030212 general & internal medicine Cooperative Behavior health care economics and organizations patient revolution inclusive health research Health services research General Medicine Research Personnel Female patient participation intellectual disabilities 0305 other medical science Inclusion (education) inclusive research Community-Based Participatory Research Persons with Mental Disabilities education Participatory action research Context (language use) Patient-Centred Medicine Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18] 03 medical and health sciences Intellectual Disability Humans Life Science Education and Learning Sciences samenwerking Patient participation Medical education business.industry Research Transparency (behavior) collaboration health research Onderwijs- en leerwetenschappen business verstandelijke beperking |
| Zdroj: | BMJ Open 6 (2016) 8 BMJ Open, 1-12. BMJ Open ISSUE=6;STARTPAGE=1;ENDPAGE=12;TITLE=BMJ Open BMJ Open BMJ Open, 6, e011861 BMJ Open, 6, 8, pp. e011861 BMJ Open, 6(8) |
| ISSN: | 2044-6055 |
| Popis: | Contains fulltext : 172519.pdf (Publisher’s version ) (Open Access) BACKGROUND: The British Medical Journal's (BMJ's) patient revolution strives for collaboration with patients in healthcare and health research. This paper studies collaboration with people with intellectual disabilities (ID) in health research, also known as inclusive health research. Currently, transparency and agreement among academics is lacking regarding its main aspects, preventing upscaling of the patient revolution. OBJECTIVE: This study aims to gain agreement among academics on 3 aspects of inclusive health research for people with ID: (1) designs and methods, (2) most important characteristics and (3) outcomes. DESIGN: A Delphi study was conducted with academics with experience in inclusive (health) research and on people with ID. The study consisted of 2 sequential questionnaire rounds (n=24; n=17), followed by in-depth interviews (n=10). RESULTS: Academics agreed on (1) a collaborative approach to be most suitable to inclusive health research, (2) characteristics regarding the accessibility and facilitation of inclusive health research, and (3) several outcomes of inclusive health research for people with ID and healthcare. Other characteristics agreed on included: atmosphere, relationship, engagement, partnership and power. It was stressed that these characteristics ensure meaningful inclusion. Interviewed academics voiced the need for a tool supporting the facilitation and evaluation of inclusive health research. There was ambiguity as to what this tool should comprise and the extent to which it was possible to capture the complex process of inclusive health research. DISCUSSION AND CONCLUSIONS: This study underlines the need for transparency, facilitation and evaluation of inclusive health research. The need for in-depth interviews after 2 Delphi rounds underlines its complexity and context dependence. To increase process transparency, future research should focus on gaining insight into inclusive health research in its context. A tool could be developed to facilitate and evaluate inclusive health research. This tool will be partially applicable to participatory research in general and thereby upscale the patient revolution. |
| Databáze: | OpenAIRE |
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