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

      research-article
      Author(s): , PhD, RD 1 , , MD, MSc, FRCPC 1 , , DEC 2 , , MD, FRCPC 3 , , MD, FRCPC 4 , , MD, PhD, FRCPC 5 , , PhD 1 , , PhD 1 , , MD, MSc, FRCPC 1 ,
      Editor(s):
      Other contributor(s): (Reviewer), (Reviewer)
      Publication date (Electronic):
      Journal: JMIR Research Protocols
      Publisher: JMIR Publications
      Keywords: type 1 diabetes, youth, stigma, perception, well-being

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          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).

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          Most cited references30

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          Emerging adulthood. A theory of development from the late teens through the twenties.

          J Arnett (2000)
          Emerging adulthood is proposed as a new conception of development for the period from the late teens through the twenties, with a focus on ages 18-25. A theoretical background is presented. Then evidence is provided to support the idea that emerging adulthood is a distinct period demographically, subjectively, and in terms of identity explorations. How emerging adulthood differs from adolescence and young adulthood is explained. Finally, a cultural context for the idea of emerging adulthood is outlined, and it is specified that emerging adulthood exists only in cultures that allow young people a prolonged period of independent role exploration during the late teens and twenties.
          Article 0 comments Cited 1088 times – based on 0 reviews     Review now
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            The Problem Areas in Diabetes Scale. An evaluation of its clinical utility.

            G Welch, A Jacobson, W Polonsky (1997)
            To evaluate the reliability and concurrent and discriminant validity of the Problem Areas in Diabetes (PAID) scale, a new measure of emotional functioning in diabetes. A battery of questionnaires, including the PAID, was completed by 256 volunteer diabetic outpatients. In our analyses, we examined the PAID's internal structure and compared mean IDDM and NIDDM treatment group scores in regression analyses to explore its discriminant validity. We also evaluated concurrent validity from the correlations between the PAID and diabetes-specific measures of coping and health attitudes and HbA1c. Principal component analyses identified a large emotional adjustment factor, supporting the use of the total score. Significant sizable correlations were found between the PAID and a range of selected health attitudinal measures. There were significant differences (with small-to-moderate effect sizes) in PAID scores between IDDM and NIDDM patients and between IDDM and NIDDM insulin- and tablet-treated subgroups; no differences were found between NIDDM insulin- and tablet-treated subgroups. The study findings provided support for the construct validity of the PAID, including evidence for discriminant validity from its ability to detect differences between IDDM and NIDDM treatment groups expected to differ in the emotional impact of life with diabetes. Future studies should explore the PAID's performance in nonspecialist treatment settings as well as its responsiveness to clinical change.
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              Canadian Diabetes Association 2013 clinical practice guidelines for the prevention and management of diabetes in Canada. Introduction.

              Alice Y Y Cheng (2013)
              Article 0 comments Cited 150 times – based on 0 reviews     Review now
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                Author and article information

                Contributors
                Kaberi Dasgupta:
                Department of MedicineMcGill University687 Pine Avenue West, V-Building (V1.08)Montreal, QC, H3A 1A1Canada1 514 934 1934 ext 447151 514 934 8293kaberi.dasgupta@mcgill.ca
                ORCID: http://orcid.org/0000-0002-2447-3553
                Journal
                Journal ID (nlm-ta): JMIR Res Protoc
                Journal ID (iso-abbrev): JMIR Res Protoc
                Journal ID (publisher-id): ResProt
                Title: JMIR Research Protocols
                Publisher: JMIR Publications (Toronto, Canada )
                ISSN (Electronic): 1929-0748
                Publication date Collection: Oct-Dec 2016
                Publication date (Electronic): 15 December 2016
                Volume: 5
                Issue: 4
                Electronic Location Identifier: e242
                Affiliations
                [1] 1Department of Medicine McGill University Montreal, QCCanada
                [2] 2Concordia University Montreal, QCCanada
                [3] 3BC Children’s Hospital University of British Columbia Vancouver, BCCanada
                [4] 4Alberta Children’s Hospital University of Calgary Calgary, ABCanada
                [5] 5Centre Hospitalier Universitaire Sainte-Justine Université de Montréal Montreal, QCCanada
                Author notes
                Corresponding Author: Kaberi Dasgupta kaberi.dasgupta@ 123456mcgill.ca
                Author information
                http://orcid.org/0000-0002-2699-2920
                http://orcid.org/0000-0001-5833-5303
                http://orcid.org/0000-0001-5722-0539
                http://orcid.org/0000-0002-1379-7472
                http://orcid.org/0000-0001-6337-7241
                http://orcid.org/0000-0002-0102-2389
                http://orcid.org/0000-0002-4168-4993
                http://orcid.org/0000-0003-4993-4544
                http://orcid.org/0000-0002-2447-3553
                Article
                Publisher ID: v5i4e242
                DOI: 10.2196/resprot.6629
                PMC ID: 5200843
                PubMed ID: 27979791
                SO-VID: 6bb0b84d-d01c-4fd9-94f6-0b8cfadf1941
                Copyright © ©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.
                License:

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://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.

                History
                Date received : 8 September 2016
                Date revision requested : 19 November 2016
                Date revision received : 24 November 2016
                Date accepted : 25 November 2016
                Categories
                Subject: Protocol
                Subject: Protocol

                Keywords: type 1 diabetes,youth,stigma,perception,well-being
                Data availability:
                Keywords: type 1 diabetes, youth, stigma, perception, well-being

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