REVIEW ARTICLE

 

Exploring diabetes-related stigma in adolescence: A critical review

 

 

Nadine Janneke^I; Elmari Deacon^II

^ICommunity Psychosocial Research (Compres), Faculty of Health Sciences, North-West University, Potchefstroom, South Africa
^IIOptentia Research Unit, Faculty of Health Sciences, North-West University, Potchefstroom, South Africa

Correspondence

 

 

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ABSTRACT

BACKGROUND: Stigma experiences challenge Type 1 Diabetes Mellitus (T1DM) adolescents. Such an impact causes complications in their self-management behaviour and identity formation.
AIM: To critically synthesise, analyse, interpret and reflect on research regarding the experiences of T1DM adolescents and stigma through identifying the types of stigma experienced and the impact they have on T1DM adolescents.
METHOD: Three scholarly databases were used to identify scientific data, which was subjected to a screening process using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) method of extraction and analysis. One hundred and nine articles were scanned, yet 14 eligible articles were included in the review. Using thematic analysis, the experiences of T1DM adolescents and stigma were consolidated, improving our understanding of the interactive nature of stigma.
RESULTS: T1DM adolescents experience social, enacted, internal and self-stigma. These experiences result in suboptimal T1DM self-management and the non-disclosure of a T1DM diagnosis. Negative effects associated with stigma experiences are linked to challenges in T1DM identity integration and decreased wellness. A diagram was developed to explain the continuous interactive nature of stigma.
CONCLUSION: Stigma experiences may have a negative impact on adolescents in the absence of support structures and appraisal strategies.
CONTRIBUTION: Within a primary care setting, practitioners are empowered to comprehend the stigmas experienced by T1DM adolescents. Through this knowledge, adolescents may be educated to cope with such experiences without compromising their T1DM self-management or their psychosocial development. Academically, the model can assist future researchers in understanding the relationships that exist between stigmas while informing opportunities for interventions in curbing the effects of stigma.

Keywords: adolescence; critical review; perceived stigma; stigma; T1DM.

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Introduction

Well-being in adolescence matters.¹ Adolescent well-being has been identified as a key priority by the United Nations 2030 Agenda for Sustainable Development in the Global Strategy for women's, children's and adolescents' health 2016-2030.² Sustainable Development Goal (SDG) 3 is directed at the promotion of health and well-being in adolescence; it is also the first time that adolescents are included alongside children and women in the Global Strategy Goals (2). The Global Strategy for Women's, Children's and Adolescents' Health 2016-2030 provides challenges specifically pertaining to adolescent health and well-being. (1) The leading causes of death in adolescent girls are suicide and complications during childbirth, (2) eighty per cent of adolescents are not physically active and (3) seventy per cent of preventable adult deaths because of non-communicable diseases have their root cause in adolescence.²

Adolescent development (at ages 12-18 years) remains a particularly vulnerable phase during which numerous cognitive, identity, emotional and social changes occur.^3,4 The main psychological aim, during adolescence, is solidifying a self and social identity that is distant from parents while having a strong focus on feedback from social interaction and input from peers.^3,4 In unison with the striving for autonomy, cognitive changes occur that intensify identity development. Self-regulation and long-term planning remain processes that will only fully develop in young adulthood, and it appears that adolescents base their decisions on cognitive evaluation and psychosocial determinants.⁵ The prefrontal cortex and the limbic system, known to inform social cognition, self-consciousness, planning and decision making, are still in development.^3,5 In potentially rewarding situations, limbic system activation occurs and dominates the underdeveloped prefrontal cortex's ability to exercise cognitive control.³ Scholars agree and elaborate that adolescents find it difficult to make informed decisions, as is evident in risky behaviour.⁶ Risky behaviour is rewarded by peer acceptance and can include using drugs, smoking, drinking and engaging in dangerous activities.⁷ Risk-taking does not always result in extreme behaviour but is an exploratory activity aimed at self-resolving uncertainties, which are necessary to achieve developmental goals, knowledge and wisdom.⁸

Adolescents living with Type 1 Diabetes Mellitus (T1DM) need to, in addition to developmental challenges, fulfil the role of disease manager and self-administrator of life-dependent treatment through self-injecting. Self-injecting is considered to be a highly stigmatised act yet forms part of the daily reality for patients living with T1DM.

Recent global statistics in the International Diabetes Federation (IDF) Atlas Report communicate that 1.52 million people, under the age of 20 years, live with T1DM.⁹ Studies indicate a peak age of T1DM onset between the ages of 10 years and 15 years.¹⁰ To complicate the number of diagnoses under the age of 20 years, researchers found that childhood-onset T1DM patients carry a greater risk of developing anxiety and stress-related disorders, thereby compromising well-being.¹¹ For these reasons, adolescents who cope with diabetes, while navigating through adolescence, deserve special research attention.

Diabetes is a chronic metabolic condition that develops as a result of the destruction or dysfunction of pancreatic beta-cells, resulting in insufficient production of insulin^12,13,14 and can be caused by environmental, physiological, genetic or behavioural factors.¹⁵ Various classifications of diabetes exist. The most diagnosed form of diabetes is type 2 diabetes mellitus (T2DM), followed by T1DM, which accounts for 8.75 million people as calculated in 2022.⁹

In T1DM, the body erroneously attacks itself, causing the pancreas to stop manufacturing insulin.¹⁶ Insulin is a vehicle that facilitates blood sugar entry into the cells, which is converted to energy.¹⁷ As blood sugar builds up in the bloodstream, it causes fatally elevated blood sugar levels.¹⁸ Type 1 diabetes mellitus patients require immediate insulin replacement therapy, which involves the daily self-administration of insulin by means of an insulin pen, syringe or the use of an insulin pump,¹⁹ daily glucose monitoring through finger pricks and lifestyle modifications that include dietary control.^10,20 For adolescents with T1DM, navigating through identity formation, independence, autonomy and social acceptance, diabetes management is a particularly challenging task.

Adolescents commence self-managing T1DM. Scholars found conflicting evidence on how adolescents interpret the transition from the parental management of their diabetes to the self-management thereof.²⁰ Results indicate a positive correlation between parents acting in a supportive and co-managerial role, while an over-involvement of parents leads to increased anger and feelings of lowered social competence. In a longitudinal study, tracking glycaemic control from adolescence to early adulthood. Researchers found fluctuations in glycaemic levels and concluded risk factors as being, firstly, adolescents who internalise problems rather than voicing concerns and secondly, social difficulties such as conflict with friends.²¹

Glycaemic levels indicate the amount of sugar in the bloodstream. Typical aetiological complications of diabetes mellitus include hypoglycaemia, diabetic ketoacidosis, hyperglycaemic neuropathy and hyperglycaemic diabetic coma.¹³ To avoid complications, patients are required to continuously self-monitor blood sugar levels.²² Complications are not exclusive to unstable glycaemic levels; T1DM patients also face mental health complications. Type 1 diabetes mellitus adolescents have been noted to have significantly increased general anxiety levels, which are two to three times higher than those of their healthy peers.²³ General anxiety levels may be influenced by the psychological impact of identity-disease integration while confronting diabetes-related stigma, which is considerably problematic in younger patients aged 14-24 years.^23,24

Stigma is the possession of idiosyncrasies of a discrediting or different nature and is considered to devaluate a person's identity, may disqualify a person's humanity or act as a source of resilience.²⁵ Scholars agree and elaborate on stigma as a social, multidimensional and complex phenomenon,²⁶ which is proven to have a negative effect on health-seeking behaviour and the emotional well-being of young people and adolescents.^27,28

Stigma is noted to hold many variants, including social, enacted, perceived, internalised and self-stigma. Social stigma entails the negative perception of society on a particular group or individual possessing a distinguishing characteristic that separates them from what is considered 'normal'.^29,30 Enacted stigma relates to the discrediting behaviour and acts directed at the stigmatised person, which can include exclusion in everyday activities and social distancing.²⁶ The effects of social exclusion and isolation in adolescence have a negative impact and are linked to poor academic performance, social difficulties and poor mental health outcomes, including aggressive behaviour, depression and social stress.³¹ Perceived stigma relates to how the recipient of stigma values, appraises and assesses a particular stigma as important or relevant.^26,30,32 When perceived stigma is appraised, internalised stigma follows. Internalised stigma relates to the experiences of living with a stigma and involves feelings of shame, self-blame and guilt^26,29,33 with wider mental health and well-being implications relating to depression and anxiety.³⁴

Various studies confirm that enacted, perceived and internalised stigmas are linked to self-stigma.^26,29,30 Self-stigma occurs when labels are internalised and behaviour is adapted to reinforce the stigma.^26,30 Literature warns of stigma's negative implications on health.²⁶ Added to this, scholars concur and elaborate on the disabling effects of stigma on the treatment and management of a disease, the utilisation of healthcare services, disclosure of a health condition and the adherence to treatment plans.²⁹ In a systematic review, a clear correlation between the use of injectables as a perpetuating factor of diabetes stigma as it mimics the use of illegal substances has been found.²⁹

Adolescents who live with a chronic disease, such as T1DM, find it more challenging to manage the biological, psychological and psychosocial factors that face them, while self-managing their diabetes, independent of parents.^35,36 Experiencing stigma can be detrimental at any age, yet lifelong well-being is founded in adolescence.³⁷

Taking these aspects into consideration, the 2030 Agenda for Sustainable Goals² clearly marks the health and well-being of adolescents as a key priority and includes, as a focus, the minimising of risk factors experienced in adolescence because of non-communicable diseases, leading to adult deaths. Type 1 diabetes mellitus is a non-communicable disease, which relies on effective self-management. Diabetes-related stigma is mainly associated with the very act of self-management and self-administering of treatment.²⁹ Social experiences of stigma are noted to influence general anxiety levels of adolescents.^23,24

Aim

It is for these reasons, this critical review aims to critically synthesise, analyse, interpret and reflect on previous research regarding the experiences of T1DM adolescents and stigma to provide a holistic, integrated and in-depth perspective on the experiences when stigma, T1DM and adolescence intersect. Special attention was given to the types of stigmas experienced and how they influence T1DM adolescents. Available scientific literature regarding T1DM and adolescence is ample, yet limitations exist on stigma experiences and how they influence adolescents living with T1DM.

 

Method

Research approach

A critical review perfectly positions this research in its quest to analyse existing literature on the topic. It allowed for a substantial investigation of the findings of identified literature and the interpretation thereof, allowing for a summarised body of knowledge. The approach further paved the way to move beyond a mere description of current research to the construction of a hypothesis founded in the thorough investigation of existing literature.³⁸ All data collection and review occurred in 2023.

Search method

With the assistance of a North-West University (Potchefstroom Campus) faculty librarian, EBSCOhost (including Academic Search Complete, APA PsycINFO, APA PsycARTICLES and SocINDEX), Scopus and ScienceDirect databases were used to identify relevant academic literature. The keywords used to identify relevant literature were adolescence*, diabetes*, stigma, type 1 diabetes* and T1DM. Boolean operators AND and OR were used to further clarify the scope of articles. A total of 109 articles were identified. Eighteen duplicates were removed, and a further five articles were removed because of their inaccessibility, narrowing the total number of articles included for screening to 86.

Inclusion and exclusion criteria

All searches were restricted to incorporate published and peer-reviewed articles dated 2013-2023, allowing for relevant and current data. The age range of inclusion was limited to adolescents aged 12-18 years, currently living with T1DM. Full-text journals and those who followed a qualitative, quantitative or mixed method approach have been included, while review articles were excluded. Conference proceedings have been excluded, while Doctor of Philosophy theses, Master's dissertations, and mini dissertations were included. Lastly, only articles that have been published in English or those that have been translated before their publication have been included in the search approach.

Critical appraisal of literature gathered

Two independent reviewers scanned the initial article titles, abstracts, purpose and aims to determine relevance based on how they correlate to the review question and the keywords as guided by the inclusion and exclusion criteria. The title, keywords and abstracts were scanned to determine compliance with these criteria. Fifty-three articles were excluded, bringing the total number of articles to be presented for a full text scan to a total of 33.

Both the primary and secondary reviewers independently and manually reviewed the full text of selected articles, subjecting them to in-and-exclusion criteria while assessing the soundness of their methodology. Special care was taken to obtain ethical approval and ensure that both ascent and consent were provided for the participation of adolescents with T1DM in the review. After the articles were scanned independently, the primary and secondary reviewers discussed their findings. Each article was discussed, and the relevance to the study was examined. In cases where the reviewers' opinions differed, reviewers reverted to the full text of the articles, and a collective decision was made. Through the process, 19 articles were excluded leaving a total of 14 scientific and peer reviewed articles that possessed rigour.

Figure 1 visually depicts the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram, showing article selection criteria.

 

 

A total of 69 articles did not qualify for this review, and reasons for exclusion included a lack of focus on stigma and a lack of direct experiences of adolescents (more focus was given to experiences from parents, caregivers and healthcare practitioners). Further exclusions were based on adolescents with pre-existing mental health conditions, such as depression.

Information synthesis

An in-depth understanding was obtained by both reviewers of the 14 articles identified for the review. Relevant information pertaining to the research question was extracted and tabulated in Microsoft Excel^©39 and included the name of the author(s) and publication information (aim, research design and method), the country in which the study was conducted, the sample size and ages of participants, participant demographics, the main findings, stigma types, conclusions and limitations as published.

All relevant data were included in the synthesis for the purpose of transparency and relevance and to ensure that possible themes were not omitted. Such inclusions added to the transferability, reliability and validity of the findings. Specific focus was given to identifying the types of stigmas experienced, followed by an investigation into how stigma influences T1DM adolescents. For this to have crystallised, articles were read and re-read again, process notes were made and visually depicted to ensure an in-depth understanding of the subjective experiences of participants in context (for qualitative studies), while results from quantitative studies were listed and incorporated in the visual depiction of data. Mixed method studies were, initially, viewed in their entirety, whereafter qualitative and quantitative data were incorporated in the visual depiction.

Data extraction

Following an in-depth understanding of data, data extraction was performed by the primary reviewer. The extracted data contain the title and author(s), country where the study was performed, participants and gender specifications, the research design and aim of each article, a summary of the main findings and the limitations of each article. Within the process of data extraction, care was taken to reflect on the aspects of each study, answering the current research question. Table 1 presents the extracted data.

 

Review findings

In total, 14 publications were included in this critical review, three from the United States, three from Africa, two from Canada, two from Australia, one from Turkey, one from Korea, one from Jamaica and one from Israel, providing a wide scope of data through various contexts and cultures. Of the 14 articles, nine produced qualitative data, three focused on quantitative methods and two utilised mixed method approaches. Of the 14 articles, three were pioneering studies focusing on the experiences of T1DM adolescents and stigma in their specific areas or countries, Jamaica, Perth and Uganda. Combined, these studies allowed access to the experiences of 888 adolescents, of which 544 were female, 393 male and 5 gender fluid individuals.

Types of stigma

Four stigma types were identified in all 14 articles of the review, namely enacted stigma, internalised stigma, social stigma and self-stigma. The types of stigmas and the emerging themes, as identified in the review, are illustrated in Table 2.

 

 

Enacted stigma

The most common form of stigma experienced by T1DM adolescents is enacted stigma. Enacted stigma refers to the discrediting behaviour, verbally or non-verbally, intentionally or non-intentionally, directed at a stigmatised person.²⁶ Through analysis of the articles, major themes emerged as being experiences at school, experiences at home, followed by microaggressions.

The effects of enacted stigma can be significantly linked to compromised T1DM self-management and higher haemoglobin A1c (Hb1Ac) levels, having serious consequences on health and a negative impact on psychological well-being.^44,47

Experiences at school

Stigma experiences at school are evident in the exclusion of T1DM adolescents from participating in sports or social activities.^{41,44,46,47,48,49,51,52,53} Adolescents report this exclusion to be linked to the visibility of T1DM management that distinguishes them from peers.⁴¹ Type 1 diabetes mellitus adolescents share a key distinguishing factor, differentiating them from their healthy peers; they have the responsibility of self-management, whereas most of their peers have no responsibilities.⁴³ Considering that adolescents spend most of their time at school, these findings are worrisome.

On the school grounds, stigma is experienced through the close monitoring and reprimanding behaviour of teachers at school, specifically related to self-management.^14,46,48 T1DM adolescent learners report being restricted to publicly self-manage during school hours. Adolescents are required to manage their sugar levels under the watchful eye of a school nurse.⁴⁶ Because of a fear of missing class, learners manage their T1DM from 'behind the classroom in a bush', making them more vulnerable to adverse stigma reactions and labelling from peers (p. 5).⁴⁶ Many learners are required to carry self-management devices. When devices alert them of unstable levels during class times or tests, teachers get annoyed and publicly reprimand learners for disrupting the class, categorising them as rulebreakers.^46,52 As one adolescent describes, 'Teachers do not get it too. It's just hard, you'd rather do everything secretly' (p. 150).⁵² Secrecy in self-management, coupled with the public reprimanding and monitoring by teachers, drives the stigma that T1DM adolescents are different from their peers and even incompetent in caring for themselves. Non-disclosure and compromised self-management solve the fear of such stigma.^44,46,47,53

On the sports field, school policies prohibit the carrying of equipment, such as insulin pumps, while engaged in team sports, which physically distinguishes T1DM adolescents as different.^51,53 When T1DM adolescents do participate, they are forced to disclose their T1DM status and report receiving unwanted special privileges.^14,51

Added to this, teachers fear the effects of hypoglycaemia. Fearing their inability to assist in these situations, they decide to exclude T1DM adolescents from teams.⁴⁹ Being active increases the need for public T1DM self-management. Here too, adolescents report how people's judgemental, negative reactions to their self-management highlight their visibility next to the sports field.^49,51 To avoid all these complications and exclusions, T1DM adolescents opt to participate in individual sports, further limiting their opportunities for developing healthy peer relationships.⁵¹

Experiences at home

Stigma experiences at home revolve around overprotective parents who mistrust the abilities of their T1DM adolescent to effectively self-manage. Such parents are reportedly overprotective and controlling to the extent that they create dependent adolescents.^{14,43,46,47,51,53} Constant supervision from parental figures enforces the perception that adolescents are different from their peers, even vulnerable.

While most articles report on the overprotection of T1DM adolescents by parents, an article from Kenya explains how adolescents of uninvolved parents successfully manage T1DM, yet, in spite of successful self-management, the desire to be part of, and fit into a social group remains.⁵²

Enacted stigma at home is clearly evident in parental reluctance to allow adolescents the opportunity to become independent through learning to self-manage their T1DM. Acts such as these set the stage on which T1DM adolescents feel less worthy and increase their vulnerability to experiences of microaggression.

Microaggression

Microaggressions are verbal, non-verbal or subtle acts directed at T1DM adolescents to discredit them.⁴⁰ Physical acts are described to include being publicly ridiculed, called names, regarded as sick, labelled, cursed, bewitched, doomed or sometimes mistaken for having HIV^41,47,48,52 and extend to acts where T1DM adolescents' equipment is being stolen at school, while no provision is being made for the storage of insulin.⁵²

At school, peers observe how teachers act negatively towards T1DM adolescents and follow their example by acting with microaggression, under the banner of 'promoting school polices'.^41,46 T1DM adolescents are observed by teachers and reprimanded when they eat something sugary; these acts are extended by peers calling T1DM adolescents names such as 'sugar mamma', 'patient' or 'you soon dead'.^41,47,49,53 Acts of microaggression further enhance the stigma that T1DM adolescents caused their own T1DM through their unhealthy diet.⁵³ Discrediting acts by teachers are fueling the use of digital T1DM management tools.⁴⁶ As mentioned earlier, many T1DM adolescents use devices and cell phones to monitor sugar levels. When these devices signal in class or during tests, teachers are immediately frustrated and irritated and reprimand the T1DM adolescent. Peers adapt and respond with laughter, ridiculing the T1DM adolescent. Fearing these scenario's T1DM adolescents turn their devices off, thus compromising self-management.⁴⁶

Internalised stigma

Internalised stigma relates to the experiences of living with a stigma and involves feelings of shame, self-blame, guilt, being a burden to others, weak, inferior and abnormal,^26,29,33 leading to wider negative mental health and well-being outcomes, such as depression and anxiety.³⁴ Internalised stigma has been identified as the second most frequent stigma type experienced by T1DM adolescents. Through thematic analysis, such experiences can be consolidated under two sub-themes, namely the non-disclosure of T1DM status and feeling different.

Non-disclosure of Type 1 diabetes mellitus status

The perception of stigma, and the evaluation thereof as important, is significantly linked to the decision to disclose T1DM status.^41,45 Most of the articles describe how T1DM adolescents fear disclosing their status because of the presence of stigma, fear of rejection and the humiliation of public self-management.^{41,43,44,45,47,48,49,52,53} Injecting in public is a constant worry that increases social visibility and influences what peers may think.⁴⁴ Non-disclosure is a safer alternative in protecting the T1DM adolescent from social adversities, as already felt or observed through enacted stigma.

Those brave enough to disclose their T1DM reap the benefits and report positive experiences through the continuous support of friends and family, receiving assistance from peers in difficult times and a reduction of stigma experiences.^41,43,47 Various researchers agree, and results indicate a significant link between adolescents sharing their T1DM status and reduced stigma experiences, the positive perception of insulin treatment and private self-management.⁴⁵

Social stigma

Social stigma ranked third most frequent. Themes identified within social stigma are trypanophobia, misconceptions about T1DM and culturally driven stigma. Social stigma sets the stage for the existence of all types of stigmas. The effect of social stigma leads to stigma-avoidant behaviour, such as managing T1DM in secret and out of the public eye.⁴⁵ Authors have demonstrated a significant relationship between stigma and the negative perception of insulin treatment, disclosing T1DM status and self-management.

Social trypanophobia

The management of T1DM involves testing sugar levels via a finger prick and injecting insulin to control HbA1c levels.^10,20 Nine articles address the public injecting of insulin as used in T1DM self-management as a source of stigma.^{41,43,44,45,47,48,49,50,52} Adolescents describe the difficulties of self-management because of the stigmatised view of needles, while receiving negative evaluations from peers assuming T1DM adolescents are taking drugs, inducing an abortion or have HIV.^41,43,44,49 Stigmatised views are not only confined to the act of injecting but also focus on the visible signs at the sites of injection that deform adolescent's body image.^43,49

Misconceptions about type 1 diabetes mellitus

Common social misconceptions regarding T1DM are based on a lack of T1DM disease knowledge and on cultural superstitions. The most occurring lack of T1DM knowledge is that this non-communicable disease is, in fact, contagious and that its root cause is ascribed to maintaining an unhealthy lifestyle, thus explaining the misinterpretation between T1DM and T2DM.^{44,45,47,48,52,53} Resulting from this, T1DM adolescents are excluded from opportunities, such as participating in sports or joining social events.^{41,44,46,47,48,49,51,52,53} Adolescents resolve to isolation and risk T1DM complications rather than facing the wrath of false beliefs associated with T1DM.^{44,45,47,48,52,53}

A last yet noteworthy and frequently occurring theme under social stigma is found in cultural superstitions derived from articles in Jordan and Africa, where T1DM is believed to be a punishment for previous family or individual sins or being the victim of witchcraft.^45,47,48,52 Such experiences affect not only adolescents but also their families, leading to secrecy, overprotection, fear and avoidant behaviour from the entire familial system.^45,47,48,52

Social stigma drivers in Turkey view male T1DM adolescents as weak, while females are considered less fertile.⁴⁵ In both Kenya and Uganda, female T1DM adolescents have a similar fate and are considered less fertile plus incapable of caring for large households.^47,52 Ugandan T1DM adolescents are further considered bewitched with 'Sukaali', which is linked to early mortality.⁴⁷ The extent to which stigma infiltrates the life of Zambian T1DM adolescents incorporates linguistic issues. Zambian adolescents share their frustration of not being able to describe their experiences regarding T1DM in words, as seldom words exist to explain T1DM in local languages.⁴⁸

Complications of social stigma have no boundaries, as they dictate the accepted norms of society. Type 1 diabetes mellitus adolescents have to cope with their diagnosis while adapting to the responsibility of self-management. While this remains a difficult task in a stable and supportive environment, imagine the impact of attempts to incorporate T1DM into identity in a hostile environment, ridden with stigma.

Self-stigma

Self-stigma occurs when labels are internalised and behaviour is adapted to reinforce the stigma.^26,30 Crespo-Ramos⁴⁰ and colleagues define self-stigma as a sub-category of internalised stigma, which incorporates any stigma directed towards the self, being either physical, spiritual, psychological or emotional and can occur in combination.⁴⁰ Self-stigma within these articles occurs when T1DM is not incorporated into identity, which causes stigma to infiltrate every aspect of the self and allows it to direct and determine behaviour.^{40,41,43,45,48,49,53}

Identity integration concerns

Incorporating T1DM into identity appeared as the most concerning theme under self-stigma. Adolescents experience inner conflict because of T1DM, see themselves as less autonomous, differentiated from what is expected from them both culturally and according to gender roles, as well as being incapable of living a normal life.^{40,41,43,45,48,49,53} Adolescents with T1DM struggle to integrate T1DM into their identity, hereby denying their T1DM status while simultaneously not practising optimal self-care.^{40,41,43,45,53} This form of malintegration leads to a struggle to balance 'the self' with T1DM.⁴¹ Stigma hinders T1DM identity integration as described through the 'forced identity' that T1DM adolescents are living with.⁵³ Fourteen articles describe how this 'forced identity' hinders the ability to fit in, to feel normal and to accept the self as autonomous, even as a part of a cultural group.^{40,42,43,44,45,46,48,49,50,51,52,53}

Adolescents who incorporated T1DM into their identity and self-concept viewed T1DM as a part of their new selves and viewed self-management as a challenge rather than a threat. For these individuals, stigma experiences are seen as opportunities to educate peers about their illness.⁴³ Adolescents who incorporated their T1DM did not allow the negative reactions of peers to affect their self-management; they took direct, active roles in addressing diabetes in social situations, shared their diabetes status and educated others about their illness.⁴³

The influence of stigma experiences was observed in all studies, with negative experiences of stigma found to cause a lower quality of life (QoL), which impacts identity development and integration.⁴² Quantitative studies reported 59% to 98.7% of adolescents living with at least one stigma experience.^{40,42,44,45,50} Articles reviewed noted how negative stigma experiences affect physical, emotional and psychological well-being.^45,50 Negative stigma experiences have dire results,⁴⁰ where all their participants (65 adolescents) presented with the effects of self-stigma in the form of depressive symptoms. The findings further indicated a significant link between social stigma and experiences of anhedonia. Scholars who conducted studies in 2018 found similar results linking negative experiences of stigma to poor glycaemic control, self-management avoidant behaviour and lower physical, emotional and psychological well-being leading to the development of a fear of insulin treatment.^45,50 A link has been established between enacted and felt stigma impact on higher HbA1c levels, which again compromises self-management.⁴⁴ Adolescents who experience stigma are three times more likely to have an HbA1c of above 9%.⁵⁰

 

Discussion

This critical review sets out to analyse and synthesise the most updated research available on how adolescents with T1DM experience stigma. Two sub-questions guided the research by, firstly, identifying the types of stigmas that impact T1DM adolescents and, secondly, to consolidate how stigma influences adolescents living with T1DM.

Through this review, it can be inferred that enacted, internalised, social and self-stigma is experienced by most adolescents. Stigma leads to non-disclosure of T1DM status.^{41,43,44,45,47,48,49,52,53} Stigma impacts negatively on T1DM self-management.^{41,42,44,45,46,47,48,49,50,52} Stigma further influences healthy identity development, evident in the adolescent's struggles to integrate T1DM into their identity.^{40,41,43,45,48,49,53} The major identified effect of stigma experiences is decreased well-being.^{40,41,42,43,45,48,49,53}

Within any society, there are social norms and values that should be adhered to gain social acceptance. Behaviour and characteristics that contradict this norm can be described as social stigma.^29,30 Social stigma is evident throughout the review in the discrediting manner in which T1DM adolescents are treated when attempting to publicly self-manage. Social stigma is further cradled through cultural superstitions, driving the enforcement of social norms and the avoidance of disease.³² The current review concurs with this view, visualising both the accepted social norm in Western and Arab-African societies, while linking disease avoidance through exclusion. Having identified common social misconceptions and cultural beliefs related to T1DM, it could be suggested that interventions aimed at public re-education should be effective. Researchers disagree and reiterate that social stigma or stereotypes are resistant to change.³²

Social stigma fosters an environment conducive to the perpetuation of other forms of stigma, such as enacted stigma.

Enacted stigma unfolds when discrediting behaviour is directed at the T1DM adolescent who possesses the condition that society fears and discredits.²⁶ In the review, this interactionist category of stigma was the most common type of stigma experienced by T1DM adolescents. Type 1 diabetes mellitus adolescents are excluded and discredited through verbal or non-verbal comments, they are bullied, excluded from school, social and sports activities in fear of being contagious or in fear of compromising their health.

Up to this point, the review produced findings on both social stigma and enacted stigma. Literature defines perceived stigma in contradicting ways. Various definitions of perceived stigma exist. Perceived stigma is the belief that individuals hold about others' attitudes towards an illness,⁵⁴ while another relates it as the awareness created by a stigmatised individual of prejudice, discrimination and stereotyping directed at them.⁵⁵ Concerns are raised in this review about the appropriate understanding or definition of perceived stigma and if, in fact, it is a type of stigma.

From the identified literature, a clear structure of the interactive nature of stigma emerged (Figure 2), clearly indicating the function of perception and the process of cognitive appraisal from social and enacted stigma to internalised and self-stigma.

In this review, and as illustrated in Figure 2, perceived stigma is found to be a process of the perception and cognitive appraisal of stigma rather than a stigma type. When an individual experiences either social or enacted stigma, it is channelled through a primary and secondary cognitive appraisal process. This process assigns value to the experience of the stigma. If the stigma is encountered and appraised as negative, no stigma is felt by the individual; however, if the individual assigns value to the stigma and primarily appraises it as positive, it results in internalised stigma.

Internalised stigma relates to the experiences of living with a stigma and involves feelings of shame, self-blame and guilt.^26,29,33 In this review, internalised stigma is the second most prominent type of stigma experienced by T1DM adolescents. Through internalised stigma, T1DM adolescents appraise rejection and humiliation as effects of public self-management or the sharing of their T1DM status.^{40,41,43,44,45,46,47,48,49,50,51,52,53}

This internalised stigma appraisal leads to a constant internal battle of self-awareness amplified by the signs of T1DM and its successful management. Literature concurs with the findings in this review, adding that internalised stigma experiences negatively impact well-being and wider mental health.³⁴ Internalised stigma predisposes adolescents to hypervigilance for stigma experiences, leading to the appraisal of non-threatening acts as threatening, which inflates the experiences of enacted stigma. Similar experiences were found in studies surrounding sexual-minority groups, where hypervigilance to stigmatised acts placed individuals at risk for internalising their problems, potentially leading to anxiety and depression.⁵⁶ Limited data are available on the function of hypervigilance to stigma experiences of T1DM adolescents. This novel finding could be an avenue to explore for future researchers.

Following internalised stigma, a secondary cognitive appraisal occurs, this time resulting in the decision to incorporate the stigma into self-identity or to reject the stigma. Type 1 diabetes mellitus adolescents who decline to incorporate stigma experiences choose to incorporate T1DM into their identity. Through the review, it was evident that those adolescents who negatively appraise stigma in the secondary cognitive appraisal process found it easier to incorporate T1DM into their identity, which resulted in minimal or no experiences of stigma, and reported taking an active stance in their self-management behaviour while disclosing their T1DM status and even educating peers about their condition.^41,43,47 The opposite process is also true; findings indicated that adolescents who go through the stage of secondary cognitive appraisal and found truth value in the stigma refused to incorporate T1DM into their identity, leading to self-stigma.^{40,42,43,44,45,46,48,49,50,51,52,53}

By definition, self-stigma occurs when labels are internalised and behaviour is adapted to reinforce the stigma.^26,30 As stated, T1DM adolescents who self-stigmatise incorporate T1DM stigma into their identity, resulting in suboptimal and secretive self-management. Type 1 diabetes mellitus adolescents describe themselves as holding a 'forced identity' or as having no identity. This 'forced identity' has negative consequences on the ability to form an autonomous self. Self-stigma leads to isolation. Secrecy leads to self-selected exclusion from social activities as explained by participants opting to only participate in individual sports or even in some saying that they choose to be alone. The effect of selective exclusion impacts negatively on self-esteem and the development of a personal and social identity and limits opportunities for building resilience. These findings are consistent with research on the effects of secrecy and stigma.⁵⁷

Lastly, secretive self-management reinforces the negative perception the public has on injecting, linking self-management to illegal drug abuse, consistent with the definition of self-stigma, stating that self-stigma reinforces social stigma. This finding completes Figure 2 on the interactive nature of stigma, illustrating how the experience of stigma is continuous unless interventions are aimed at challenging the processes of perception and cognitive appraisal of stigma.

To summarise, experiences of stigma by T1DM adolescents are vast and extend from their social world to their deepest core. Stigma not only influences the world that T1DM adolescents live in, but it also negatively impacts their ability to become healthy, confident, independent, contributing members of society. In applying the presented Figure 2 to future studies, reviewers hope that clarity can be given to the experiences of T1DM adolescents and others living with stigma, in an effort to curb stigma and the perception and appraisal of such stigma.

 

Limitations

This review study was based on the results and discussions of 14 identified articles. In total, these articles provided access to the experiences of 883 adolescents from 14 countries. The diverse geographical spread of the article provides a thorough overview of the current research on T1DM, adolescents and stigma but cannot be generalised to a global representation. Further, some articles incorporated a large sample of participants, while others consisted of minute samples, and thus are not representative of all T1DM adolescent experiences per country, yet provide good baseline information.

Suggestions for future research and interventions

Future research surrounding the clinical impact of stigma on T1DM self-management is needed urgently. Diabetologists or endocrinologists are invited to drive research on the clinical impact of stigma experiences on T1DM self-management and well-being. Interventions to extinguish the impact of stigma experiences for T1DM adolescents should be designed and applied in healthcare policy, within assistance or management programmes and within intervention programmes. (1) Type 1 diabetes mellitus assistance or management programmes should be aimed at educating parents through developmental transition periods, such as from childhood to adolescence. Parents need to be empowered with effective skills to hand over diabetes management to adolescents. (2) Intervention programmes assisting adolescents to integrate T1DM into identity should be designed and implemented as a matter of urgency. Such interventions will foster resilience in T1DM adolescents, which will allow them to appraise stigma as frivolous. (3) Research needs to be expanded on the stigma experiences of T1DM adolescents, focusing on the perception and cognitive appraisal of T1DM stigma.

 

Conclusion

In this review, a thorough consolidation and synthesis of literature produced in-depth insight into the types of stigmas experienced by T1DM adolescents. Through the process of dissecting the stigma types, patterns of interaction between stigmas were observed, and a diagram was developed to illustrate the interactive nature of stigma. The impact of stigma experiences on T1DM adolescents where consolidated under suboptimal T1DM self-management, the promotion of secretive or non-disclosing behaviour and a lack of T1DM identity integration. The impact of stigma on this population has severe consequences for physical and mental health, well-being and normal adolescent development.

Limited scientific evidence is available on understanding T1DM stigma experiences globally, and a challenge is extended to fellow researchers to pursue such research.

 

Acknowledgements

This article contains research previously presented at the Annual Psychology Congress held in Johannesburg on 9 October 2024. The full manuscript is submitted for journal publication. No permission for publishing is required from the conference organisers. The sole intellectual property and ownership rest with the authors.

Competing interests

The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.

CRediT authorship contribution

Nadine Janneke: Design, Implementation, Analysis, Writing - manuscript. Elmari Deacon: Design, Implementation, Analysis, Writing - manuscript. All authors reviewed the article, contributed to the discussion of results, approved the final version for submission and publication and take responsibility for the integrity of its findings.

Ethical considerations

Ethical clearance to conduct this study was obtained from the North-West University Health Research Ethics Committee (HREC) (No. NWU-00133-23-A1). In addition, both reviewers completed the Training and Resources in Research Ethics Evaluation (TRREE) online ethics training and declared no conflict of interest.

Funding information

This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

Data availability

The authors confirm that the data supporting the findings of this study are available within the article.

Disclaimer

The views and opinions expressed in this article are those of the authors and are the product of professional research. It does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. The authors are responsible for this article's results, findings and content.

 

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Correspondence:
Nadine Janneke
nadine@janneke.co.za

Received: 17 Aug. 2025
Accepted: 22 Oct. 2025
Published: 06 Dec. 2025