Article Text

Using a community-based participatory research approach to meaningfully engage those with lived experience of diabetes and homelessness
  1. David J T Campbell1,2,3,
  2. Rachel B Campbell1,
  3. Anna DiGiandomenico4,
  4. Matthew Larsen1,4,
  5. Marleane A Davidson4,
  6. Kerry McBrien2,5,
  7. Gillian L Booth6,7,
  8. Stephen W Hwang6,7
  1. 1Department of Medicine, University of Calgary Cumming School of Medicine, Calgary, Alberta, Canada
  2. 2Department of Community Health Sciences, University of Calgary Cumming School of Medicine, Calgary, Alberta, Canada
  3. 3Department of Cardiac Sciences, University of Calgary Cumming School of Medicine, Calgary, Alberta, Canada
  4. 4Patient Partners, Toronto, Ontario, Canada
  5. 5Department of Family Medicine, University of Calgary Cumming School of Medicine, Calgary, Alberta, Canada
  6. 6Department of Medicine, Unity Health Toronto, Toronto, Ontario, Canada
  7. 7Department of Medicine, University of Toronto, Toronto, Ontario, Canada
  1. Correspondence to Dr David J T Campbell; dcampbel{at}ucalgary.ca

Abstract

Introduction Participatory research is a study method that engages patients in research programs, ideally from study design through to dissemination. It is not commonly used in diabetes health services research. Our objectives were to describe the process and challenges of conducting a participatory research project and to highlight the experiences of both patient co-researchers and academic researchers.

Research design and methods We recruited people with lived experience of homelessness (PWLEH) and diabetes in Toronto, Canada to become patient co-researchers. They were asked to commit to attending biweekly meetings. We undertook two major research projects: concept mapping to choose a research focus; and photovoice to explore accessing healthy food while homeless. We used a convergent mixed-methods design to evaluate their experience.

Results A diverse group of eight PWLEH had an average attendance of 82% over 21 meetings—despite this success, we encountered a number of challenges of conducting this research: funding, ethics approval and recruitment were particularly difficult. Group members reported that participation improved their ability to self-advocate in their diabetes care and provided them with tangible skills and social benefits. Group members stated that they valued being involved in all aspects of the research, in particular knowledge translation activities, including advocating for nutritious food at shelters; presenting to stakeholders; and meeting with policymakers.

Conclusions The use of participatory research methods enables academic researchers to support community members in pursuing research that is pertinent to them and which has a positive impact. In our study, co-researchers contributed in meaningful ways and also valued the experience.

  • participatory research
  • qualitative research
  • vulnerable populations
  • poverty

Data availability statement

No data are available. Given the small sample size of this study, it is impossible for the data to be truly anonymized, therefore due to ethical considerations, data are not being made available.

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Data availability statement

No data are available. Given the small sample size of this study, it is impossible for the data to be truly anonymized, therefore due to ethical considerations, data are not being made available.

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Footnotes

  • Contributors The study was conceived by DJTC and RBC with contributions from SWH, GLB and KM. The study topics were decided upon by AD, ML and MAD in conjunction with DJTC and RBC and the other members of the CDAC. Data collection was completed by DJTC, RBC, AD, ML and MAD. DJTC led the analysis of the data and wrote the first draft of the manuscript. All authors contributed significantly to data interpretation, critically revised and approved of the final submitted manuscript. DJTC is the guarantor for the manuscript.

  • Funding This work was supported by Alberta Innovates (20170233); the O’Brien Institute for Public Health Vulnerable Populations Research Fund (2018VP03); and the Cal Wenzel Family Cardiometabolic Fund for Research at the University of Calgary (201801).

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.