Stigma and Its Impact on Glucose Control Among Youth With Diabetes: Protocol for a Canada-Wide Study

Anne-Sophie Brazeau; Meranda Nakhla; Michael Wright; Constadina Panagiotopoulos; Daniele Pacaud; Mélanie Henderson; Elham Rahme; Deborah Da Costa; Kaberi Dasgupta

doi:10.2196/resprot.6629

Stigma and Its Impact on Glucose Control Among Youth With Diabetes: Protocol for a Canada-Wide Study

JMIR Res Protoc. 2016 Dec 15;5(4):e242. doi: 10.2196/resprot.6629.

Authors

Anne-Sophie Brazeau¹, Meranda Nakhla¹, Michael Wright², Constadina Panagiotopoulos³, Daniele Pacaud⁴, Mélanie Henderson⁵, Elham Rahme¹, Deborah Da Costa¹, Kaberi Dasgupta¹

Affiliations

¹ Department of Medicine, McGill University, Montreal, QC, Canada.
² Concordia University, Montreal, QC, Canada.
³ BC Children's Hospital, University of British Columbia, Vancouver, BC, Canada.
⁴ Alberta Children's Hospital, University of Calgary, Calgary, AB, Canada.
⁵ Centre Hospitalier Universitaire Sainte-Justine, Université de Montréal, Montreal, QC, Canada.

Abstract

Background: Stigma in chronic disease involves unwarranted rejection, judgement, or exclusion by others based on the chronic disease itself.

Objective: We aim to determine the prevalence of stigma among youth and young adults with type 1 diabetes in Canada, to assess associations between stigma and glycemic control, and to explore ways to address stigma related to type 1 diabetes.

Methods: The study includes 3 distinct phases: (1) refinement of survey questions, (2) assessment of test-retest reliability, and (3) a data collection and analysis phase (online survey and mailed-in capillary blood sample to assess hemoglobin A1c). A total of 380 youth and young adults (14 to 24 years old) with type 1 diabetes are being recruited through social media and clinic posters.

Results: Phases 1 and 2 are complete, and phase 3 is in progress. Thirty participants completed phase 2. The survey includes the Barriers to Diabetes Adherence in adolescent scale (intraclass correlation [ICC]=0.967, 95% CI 0.931-0.984), the Self-Efficacy for Diabetes Self-Management measure (ICC=0.952, 95% CI 0.899-0.977), the World Health Organization-5 Well-Being Index (ICC=0.860, 95% CI 0.705-0.933), 12 closed-ended questions, and an additional 5 open-ended questions to explore challenges and solutions developed by the team of experts, including a patient representative.

Conclusions: This will be the first large-scale survey to estimate the prevalence of stigma in young people with type 1 diabetes. The results of this study will allow for an appreciation of the magnitude of the problem and the need for developing and implementing solutions. This work is intended to provide an initial understanding of youth perspectives on the challenges of living with type 1 diabetes and will serve as a foundation for future research and action to help youth improve their experience of living with diabetes.

Trial registration: ClinicalTrials.gov NCT02796248, https://clinicaltrials.gov/ct2/show/NCT02796248 (Archived at http://www.webcitation.org/6mhenww3o).

Keywords: perception; stigma; type 1 diabetes; well-being; youth.

©Anne-Sophie Brazeau, Meranda Nakhla, Michael Wright, Constadina Panagiotopoulos, Daniele Pacaud, Mélanie Henderson, Elham Rahme, Deborah Da Costa, Kaberi Dasgupta. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 15.12.2016.

Associated data

ClinicalTrials.gov/NCT02796248