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

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...

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Autores principales: Brazeau, Anne-Sophie, Nakhla, Meranda, Wright, Michael, Panagiotopoulos, Constadina, Pacaud, Daniele, Henderson, Mélanie, Rahme, Elham, Da Costa, Deborah, Dasgupta, Kaberi
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5200843/
https://www.ncbi.nlm.nih.gov/pubmed/27979791
http://dx.doi.org/10.2196/resprot.6629
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author Brazeau, Anne-Sophie
Nakhla, Meranda
Wright, Michael
Panagiotopoulos, Constadina
Pacaud, Daniele
Henderson, Mélanie
Rahme, Elham
Da Costa, Deborah
Dasgupta, Kaberi
author_facet Brazeau, Anne-Sophie
Nakhla, Meranda
Wright, Michael
Panagiotopoulos, Constadina
Pacaud, Daniele
Henderson, Mélanie
Rahme, Elham
Da Costa, Deborah
Dasgupta, Kaberi
author_sort Brazeau, Anne-Sophie
collection PubMed
description 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).
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spelling pubmed-52008432017-01-05 Stigma and Its Impact on Glucose Control Among Youth With Diabetes: Protocol for a Canada-Wide Study Brazeau, Anne-Sophie Nakhla, Meranda Wright, Michael Panagiotopoulos, Constadina Pacaud, Daniele Henderson, Mélanie Rahme, Elham Da Costa, Deborah Dasgupta, Kaberi JMIR Res Protoc Protocol 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). JMIR Publications 2016-12-15 /pmc/articles/PMC5200843/ /pubmed/27979791 http://dx.doi.org/10.2196/resprot.6629 Text en ©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. https://creativecommons.org/licenses/by/2.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0/ (https://creativecommons.org/licenses/by/2.0/) ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on http://www.researchprotocols.org, as well as this copyright and license information must be included.
spellingShingle Protocol
Brazeau, Anne-Sophie
Nakhla, Meranda
Wright, Michael
Panagiotopoulos, Constadina
Pacaud, Daniele
Henderson, Mélanie
Rahme, Elham
Da Costa, Deborah
Dasgupta, Kaberi
Stigma and Its Impact on Glucose Control Among Youth With Diabetes: Protocol for a Canada-Wide Study
title Stigma and Its Impact on Glucose Control Among Youth With Diabetes: Protocol for a Canada-Wide Study
title_full Stigma and Its Impact on Glucose Control Among Youth With Diabetes: Protocol for a Canada-Wide Study
title_fullStr Stigma and Its Impact on Glucose Control Among Youth With Diabetes: Protocol for a Canada-Wide Study
title_full_unstemmed Stigma and Its Impact on Glucose Control Among Youth With Diabetes: Protocol for a Canada-Wide Study
title_short Stigma and Its Impact on Glucose Control Among Youth With Diabetes: Protocol for a Canada-Wide Study
title_sort stigma and its impact on glucose control among youth with diabetes: protocol for a canada-wide study
topic Protocol
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5200843/
https://www.ncbi.nlm.nih.gov/pubmed/27979791
http://dx.doi.org/10.2196/resprot.6629
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