Literature DB >> 19737315

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

Irene Tuffrey-Wijne1, Gary Butler.   

Abstract

BACKGROUND: People with learning disabilities have been included in research as co-researchers since the 1990s. However, there is limited literature about the processes of involving people with learning disabilities in the more intellectual and analytical stages of the research process. AIMS: To examine the potential contribution of people with learning disabilities to data analysis in qualitative research.
METHODS: This article is a reflection on one research experience. The two authors include one researcher with and one without learning disabilities. They each describe their experience and understanding of user involvement in analysing the data of an ethnographic study of people with learning disabilities who had cancer. The researcher with learning disabilities was given extensive vignettes and extracts from the research field notes, and was supported to extract themes, which were cross-compared with the analysis of other members of the research team.
RESULTS: The researcher with learning disabilities coped well with the emotive content of the data and with the additional support provided, he was able to extract themes that added validity to the overall analysis. His contribution complemented those of the other members of the research team. There were unexpected benefits, in particular, in terms of a more reciprocal and supportive relationship between the two researchers.
CONCLUSION: It is possible and valuable to extend involvement to data analysis, but to avoid tokenism and maintain academic rigour, there must be a clear rationale for such involvement. Extra support, time and costs must be planned for.

Entities:  

Mesh:

Year:  2009        PMID: 19737315      PMCID: PMC5060532          DOI: 10.1111/j.1369-7625.2009.00576.x

Source DB:  PubMed          Journal:  Health Expect        ISSN: 1369-6513            Impact factor:   3.377


  5 in total

1.  People with learning disabilities who have cancer: an ethnographic study.

Authors:  Irene Tuffrey-Wijne; Jane Bernal; Jane Hubert; Gary Butler; Sheila Hollins
Journal:  Br J Gen Pract       Date:  2009-07       Impact factor: 5.386

2.  Adults who are mentally handicapped as consumers: issues and guidelines for interviewing.

Authors:  M C Flynn
Journal:  J Ment Defic Res       Date:  1986-12

Review 3.  Involving people with learning disabilities in research: issues and possibilities.

Authors:  Tony Gilbert
Journal:  Health Soc Care Community       Date:  2004-07

4.  Using Nominal Group Technique to investigate the views of people with intellectual disabilities on end-of-life care provision.

Authors:  Irene Tuffrey-Wijne; Jane Bernal; Gary Butler; Sheila Hollins; Leopold Curfs
Journal:  J Adv Nurs       Date:  2007-04       Impact factor: 3.187

Review 5.  Involving users with learning difficulties in health improvement: lessons from inclusive learning disability research.

Authors:  Jan Walmsley
Journal:  Nurs Inq       Date:  2004-03       Impact factor: 2.393

  5 in total
  10 in total

1.  Involving service users in qualitative analysis: approaches and assessment.

Authors:  Vikki A Entwistle
Journal:  Health Expect       Date:  2010-06       Impact factor: 3.377

2.  Supporting Remote Survey Data Analysis by Co-researchers with Learning Disabilities through Inclusive and Creative Practices and Data Science Approaches.

Authors:  Dorota Chapko; Pedro Rothstein; Lizzie Emeh; Pino Frumiento; Donald Kennedy; David Mcnicholas; Ifeoma Orjiekwe; Michaela Overton; Mark Snead; Robyn Steward; Jenny Sutton; Melissa Bradshaw; Evie Jeffreys; Will Gallia; Sarah Ewans; Mark Williams; Mick Grierson
Journal:  DIS (Des Interact Syst Conf)       Date:  2021-06-28

Review 3.  A systematic review of the impact of patient and public involvement on service users, researchers and communities.

Authors:  Jo Brett; Sophie Staniszewska; Carole Mockford; Sandra Herron-Marx; John Hughes; Colin Tysall; Rashida Suleman
Journal:  Patient       Date:  2014       Impact factor: 3.883

4.  Broadening public participation in systematic reviews: a case example involving young people in two configurative reviews.

Authors:  Kathryn Oliver; Rebecca Rees; Louca-Mai Brady; Josephine Kavanagh; Sandy Oliver; James Thomas
Journal:  Res Synth Methods       Date:  2015-06       Impact factor: 5.273

Review 5.  Best practice framework for Patient and Public Involvement (PPI) in collaborative data analysis of qualitative mental health research: methodology development and refinement.

Authors:  Helen Jennings; Mike Slade; Peter Bates; Emma Munday; Rebecca Toney
Journal:  BMC Psychiatry       Date:  2018-06-28       Impact factor: 3.630

6.  Involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement.

Authors:  Louise Locock; Susan Kirkpatrick; Lucy Brading; Gordon Sturmey; Jocelyn Cornwell; Neil Churchill; Glenn Robert
Journal:  Res Involv Engagem       Date:  2019-01-03

7.  Co-producing Randomized Controlled Trials: How Do We Work Together?

Authors:  Lucy Pollyanna Goldsmith; Rosaleen Morshead; Charlotte McWilliam; Gordon Forbes; Michael Ussher; Alan Simpson; Mike Lucock; Steve Gillard
Journal:  Front Sociol       Date:  2019-03-29

Review 8.  Patient and Public Involvement of young people with a chronic condition in projects in health and social care: A scoping review.

Authors:  Femke van Schelven; Hennie Boeije; Veerle Mariën; Jany Rademakers
Journal:  Health Expect       Date:  2020-05-05       Impact factor: 3.377

9.  Self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability.

Authors:  Kristel Vlot-van Anrooij; Hilde Tobi; Thessa I M Hilgenkamp; Geraline L Leusink; Jenneken Naaldenberg
Journal:  BMC Med Res Methodol       Date:  2018-07-16       Impact factor: 4.615

10.  Stakeholders' engagement in co-producing policy-relevant knowledge to facilitate employment for persons with developmental disabilities.

Authors:  Akram Khayatzadeh-Mahani; Krystle Wittevrongel; Lisa Petermann; Ian D Graham; Jennifer D Zwicker
Journal:  Health Res Policy Syst       Date:  2020-04-17
  10 in total

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