Literature DB >> 15272885

Involving people with learning disabilities in research: issues and possibilities.

Tony Gilbert1.   

Abstract

Advances in the social position of people with learning disabilities have led to a situation where research and evaluation studies are increasingly required to include the views and opinions of people with learning disabilities. One key outcome of this shift is that some of the major funding bodies now insist on the inclusion of people with learning disabilities as a condition of research funding. This has produced new possibilities and new challenges for researchers, and it has real consequences for people working in health and social care. The present paper sets out to explore some of the developments and challenges in research with people with learning disabilities. The author provides a selective overview of developments with the aim of demonstrating the richness, ingenuity and potential of research involving people with learning disabilities. The paper is divided into three broad sections that focus on: (1) the ethics and philosophy of participatory research; (2) the methodologies employed at particular points in the research process that are designed to ensure the involvement of participants in research; and (3) building capacity in participatory research as a precondition to the further development of this approach. An investment in capacity would enable this approach to move into the mainstream of research activity involving people with learning disabilities.

Entities:  

Keywords:  Biomedical and Behavioral Research

Mesh:

Year:  2004        PMID: 15272885     DOI: 10.1111/j.1365-2524.2004.00499.x

Source DB:  PubMed          Journal:  Health Soc Care Community        ISSN: 0966-0410


  9 in total

Review 1.  Mapping the impact of patient and public involvement on health and social care research: a systematic review.

Authors:  Jo Brett; Sophie Staniszewska; Carole Mockford; Sandra Herron-Marx; John Hughes; Colin Tysall; Rashida Suleman
Journal:  Health Expect       Date:  2012-07-19       Impact factor: 3.377

2.  Co-researching with people with learning disabilities: an experience of involvement in qualitative data analysis.

Authors:  Irene Tuffrey-Wijne; Gary Butler
Journal:  Health Expect       Date:  2009-09-08       Impact factor: 3.377

3.  Perceptions and understandings of self-determination in the context of relationships between people with intellectual disabilities and social care professionals.

Authors:  Carla Vaucher; Annick Cudré-Mauroux; Geneviève Piérart
Journal:  Int J Dev Disabil       Date:  2019-06-17

4.  A qualitative study exploring why adults with intellectual disabilities and obesity want to lose weight and views of their carers.

Authors:  N Jones; C A Melville; L Harris; L Bleazard; C R Hankey
Journal:  BMC Obes       Date:  2015-12-18

Review 5.  Ethical, Legal, and Social Issues Related to the Inclusion of Individuals With Intellectual Disabilities in Electronic Health Record Research: Scoping Review.

Authors:  Melissa Raspa; Rebecca Moultrie; Laura Wagner; Anne Edwards; Sara Andrews; Mary Katherine Frisch; Lauren Turner-Brown; Anne Wheeler
Journal:  J Med Internet Res       Date:  2020-05-21       Impact factor: 5.428

6.  '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.

Authors:  Carole Beighton; Christina Victor; Iain M Carey; Fay Hosking; Steve DeWilde; Derek G Cook; Paula Manners; Tess Harris
Journal:  J Intellect Disabil       Date:  2017-08-16

7.  A cross-case comparison of the trauma and orthopaedic hospital experiences of adults with intellectual disabilities using interpretative phenomenological analysis.

Authors:  Mary Drozd; Darren Chadwick; Rebecca Jester
Journal:  Nurs Open       Date:  2020-12-10

8.  On the unethicality of disablism: Excluding intellectually impaired individuals from participating in research can be unethical.

Authors:  Charlotte Capri; Ockert Coetzee
Journal:  Afr J Disabil       Date:  2012-09-04

9.  Factors that potentially influence successful weight loss for adults with intellectual disabilities: A qualitative comparison.

Authors:  Laura J Skelly; Philomena P Smyth; Mark P Donnelly; Julian C Leslie; Geraldine Leader; Liz Simpson; Claire McDowell
Journal:  J Intellect Disabil       Date:  2020-06-24
  9 in total

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