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

      , 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 ,
      (Reviewer), (Reviewer)
      JMIR Research Protocols
      JMIR Publications
      type 1 diabetes, youth, stigma, perception, well-being

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


          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.


          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.


          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.


          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.
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            The Problem Areas in Diabetes Scale. An evaluation of its clinical utility.

            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.


                Author and article information

                JMIR Res Protoc
                JMIR Res Protoc
                JMIR Research Protocols
                JMIR Publications (Toronto, Canada )
                Oct-Dec 2016
                15 December 2016
                : 5
                : 4
                : e242
                [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
                ©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.

                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.

                : 8 September 2016
                : 19 November 2016
                : 24 November 2016
                : 25 November 2016

                type 1 diabetes,youth,stigma,perception,well-being
                type 1 diabetes, youth, stigma, perception, well-being


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