Many youth with diabetes struggle with self-esteem, body image, social role definition, and peer-related issues [1]. During adolescence, peer relationships and acceptance by friends are essential [2]. In an effort to avoid being perceived as different by their peers, adolescents may engage in passive coping strategies such as withdrawal, avoidance of activities, and nonadherence to treatment regimens [3-5]. These behaviors may continue into early adulthood, now termed emerging adulthood. This period between the ages of 18 and 30 years is characterized by the challenges of establishing autonomy, personal identity, and making vocational and educational choices [6]. Emerging adults with diabetes must contend with complex developmental tasks while also dealing with their condition and its treatment [7].

Stigma related to chronic disease may be defined as, “negative social judgement based on a feature of a condition or its management that leads to perceived or experienced exclusion, rejection, blame, stereotyping and/or status loss” [8]. Adolescence and young adulthood are life stages that may be particularly vulnerable to stigma and its adverse impacts.

Canadian Chronic Disease Surveillance System data (2008/09) indicate that 20,492 children and adolescents (aged 10-19 years old) and 15,861 young adults (aged 20-24 years old) have diabetes [9]. Type 1 diabetes accounts for approximately 95% of diabetes in childhood and adolescence, and a large proportion of diabetes in emerging adults [10]. The universal and persistent need for insulin therapy in type 1 diabetes may compound the likelihood of stigma. Another reported cause of stigma is the loss of control resulting from hypoglycemia [11]. There is a paucity of evidence-based strategies to help people live with type 1 diabetes. Living with diabetes implies not only achieving control of blood glucose levels, but also feeling empowered, healthy, and happy. These factors have positive effects on quality of life [12]. Stigma may adversely impact diabetes management, mood, and a sense of well-being; longitudinal studies indicate that even mild emotional distress, a potential consequence of stigma, predicts worse-than-expected clinical and psychological outcomes [13]. Conversely, addressing stigma has the potential to enhance emotional states and health behaviors.

Stigma in diabetes has been understudied. Some recent investigations have examined stigma in adults with type 1 diabetes through in-depth interviews [8,14]. Such qualitative evaluations provide important insights into the causes and experiences of stigma, but cannot capture the prevalence of the problem. This issue is a key component that will be addressed in this study using a large, nation-wide sample.

The primary objective of this study is to determine the prevalence of stigma among youth and young adults with type 1 diabetes in Canada, through a nation-wide online survey. The survey includes a key subset of stigma-related questions used in a previous study [15]. In addition, in partnership with patient representatives and health care providers we selected, refined, and developed a set of both closed-ended and open-ended questions to more broadly capture the construct of stigma (sources, experiences, and consequences of stigma) and the challenges of living with type 1 diabetes. An innovative aspect of our study is that we are asking participants to mail in a capillary blood sample for assessment of glycemic control (hemoglobin A1c, a measure that captures overall glucose control over the prior 2-to-3 months [16]). Using these samples, in addition to the survey questions, we will assess the associations between stigma and hemoglobin A1c levels, hypoglycemia frequency, psychological well-being, and health behaviors (ie, potential consequences of stigma). Finally, by analyzing free text responses to open-ended questions, we will identify potential strategies to address stigma.

All study procedures were reviewed and approved by the Institutional Review Board of the McGill University Health Centre. Electronic consent was obtained prior to completion of the survey.

Our study will be the first nation-wide evaluation of stigma in youth and young adults with type 1 diabetes. Previous studies have largely been qualitative; our investigation will include qualitative components but will also permit an estimate of prevalence. This strategy will allow for an appreciation of the magnitude and scope of the problem, and the development of strategies to help patients live better lives. Novel aspects of our methodology include (1) the use of an online survey, permitting evaluation across a large geographic area and inclusion of many individuals; (2) incorporation of a mailed-in capillary blood sample, allowing for objective assessments of glycemic control; (3) use of social media to enhance recruitment; and (4) inclusion of a patient representative on the research team, which provides an expert on the experience of living with type 1 diabetes. The questionnaire has been developed and pilot tested, and demonstrates good test-retest reproducibility. Our work is intended to provide an initial understanding of youths’ perspectives on difficulties and potential solutions for a normal life, and to serve as foundation for future research that helps people with type 1 diabetes achieve a good quality of life.

Online surveys are useful tools for achieving wide geographic coverage (which are particularly useful in large countries like Canada) and a large sample size, at relatively low cost. A survey-based approach in a private location may be preferable to interviews and/or witnessed survey completion when dealing with sensitive topics [31]. We have used online surveys as part of a prospective study examining depressive symptoms in 622 men (mean age 34.3 years, SD 5.0) during the first postnatal year with a newborn [32]. Participants completed standardized online self-report questionnaires measuring depressed mood, physical activity, sleep quality, social support, marital adjustment, life events, financial stress, and demographic factors during their partners’ third trimester of pregnancy. We determined that >10% of men experience depressed mood in the first year after their child’s birth [32]. We have adopted a similar method in the current study to capture the concept of stigma. Stigmatizing practice can come from family members, friends, health care providers, classmates, teachers, colleagues, and employers, among others. A self-report method, rather than interviews, was considered an ideal method to question this young population due to the high level of privacy that this approach affords.

We hypothesize that prevalence of stigma will be high in this age group, and may negatively impact diabetes management, as reflected through hemoglobin A1c (ie, high values reflect high blood glucose) and frequency of hypoglycemia episodes. To measure hemoglobin A1c, we are using mailed-in capillary blood samples. In a previous study, we used mailed-in capillary blood samples to measure glucose levels, in an effort to determine the prevalence of diagnosed and undiagnosed diabetes in the province of Quebec [19]. In that study, 52.2% (954/1829) of survey respondents provided mailed-in blood samples, of which approximately 90% were analyzable [19]. To our knowledge, no previous study has specifically examined the relationship between stigma and diabetes control in type 1 diabetes, although positive associations between emotional distress and prolonged suboptimal glycemic control have been reported [33]. This study will allow us to determine whether important medical consequences are associated with stigma (ie, an association between stigma and high hemoglobin A1c levels and/or hypoglycemia frequency).

Our previous studies have largely relied on in-person recruitment, even when the survey instruments are online (eg, introductions by clinic staff, clinic posters). However, the present study has largely relied on online and social media-based recruitment strategies. We have contacted many small diabetes organizations that focus on youth and young adults with type 1 diabetes. Many of these organizations are local initiatives that have generously tweeted about our study or posted it on their Facebook pages. This recruitment strategy appears to be particularly effective in this young, social media-savvy patient population.

Our team includes a patient representative, which is critical to the relevance of this study. There is an increasing recognition of the importance of patient representatives in health care research, due to their insights into defining research questions, adapting tools, interpreting results, and participating in knowledge translation efforts [34]. Patients are recognized as experts in their experience of disease. Our team includes such a representative, who has participated in all aspects of this study to date, and is remunerated for his work. This representative was instrumental in the selection of questions that were included in the survey, and assisted with participant recruitment via social media. This team member is also participating in the identification of themes by reviewing the responses to our open-ended questions.

Limitations of our study include potential selection bias; those who opt to participate may experience more (or less) stigma than others with type 1 diabetes, and may therefore be more likely to complete the survey. Recruitment in general is challenging, as even online surveys may be perceived as burdensome. Additionally, some participants may be reluctant to mail in capillary blood samples, even though this patient population is accustomed to capillary blood sampling for self-monitoring purposes. Our study will not capture the directly-reported perspectives of family members or friends, although we may address these factors in a future study.

Regarding future research directions, we are exploring the possibility of developing a more comprehensive stigma scale for this population. We plan to use the information from the present study to design a follow-up survey, similar to the scale developed for type 2 diabetes [35]. Such a tool could permit evaluation of trends and changes over time, with potential for incorporation into national surveys such as the biennial Canadian Community Health Survey [36].

Our study will highlight the importance of stigma in the day-to-day lives of young people with type 1 diabetes, as well as its association with diabetes control and adherence to treatment in a Canadian population. Stigma is a social construct, and therefore differs widely across societies [37]. It is important to gather information reflective of various populations. Patient-derived potential solutions will be formulated to reduce stigma in this clinical population.