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

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.

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.

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.

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.