More Yet to Explore: Adolescent Identity Formation and Type 1 Diabetes

Posted on 15.01.2024

Researcher Marianne Vie Ingersgaard shares insights from her PhD project on identity formation in young people with type 1 diabetes.

Identity formation is a fundamental aspect of psychosocial development during adolescence and emerging adulthood. Chronic illnesses, like diabetes, can profoundly impact how one views oneself.

This topic was central to Marianne Vie Ingersgaard’s PhD thesis titled ‘Identity formation in adolescents and emerging adults with type 1 diabetes’.

“While there is a growing emphasis on identity-related issues in adolescents and emerging adults with type 1 diabetes and their association with diabetes management behaviours, this area of study is still in its infancy, and our understanding remains limited, particularly in terms of its potential association with glycaemic outcomes,” explains Marianne Vie Ingersgaard.

Identity Formation and Diabetes

Throughout her project, Marianne sought to answer two questions: “How does type 1 diabetes affect identity in adolescents and emerging adults?” And “what are the implications of identity on glycaemic outcomes in this population?”

“Firstly, I validated a measurement of illness identity. Illness identity refers to the various ways in which young people incorporate diabetes into their sense of identity. This validated measure is now available in Danish and can be used in clinical practice and research. Secondly, my analyses revealed significant associations between illness identity and glycaemic outcomes. Specifically, I found that young people who reject diabetes as a part of their identity or feel engulfed by it tend to have higher HbA1c levels. In contrast, those who accept diabetes as a part of their identity typically exhibit lower HbA1c levels.

For individuals reporting lower levels of rejection and/or engulfment, their HbA1c levels typically fell within the target range of 53-58 mmol/mol. In contrast, individuals reporting high levels of rejection tended to exhibit HbA1c levels between 70-83 mmol/mol, while those experiencing higher levels of ‘engulfment’ tended to have HbA1c levels within the range of 65-73 mmol/mol. Does illness identity influence HbA1c outcomes (among many other variables), or do HbA1c levels shape one’s illness identity? My best suggestion is that both factors influence each other. Existing literature suggests that identity is a significant factor in motivation, including within diabetes care. Hence, illness identity may influence a young person’s behaviours and self-care practices, subsequently affecting glycaemic outcomes. Conversely, it is also plausible that optimal glycemic control may lead to a stronger acceptance of diabetes. In contrast, suboptimal glycemic control may contribute to the rejection of diabetes and potentially engulfment as a part of one’s illness identity. And finally, I discovered that the process of identity formation and how young people integrate diabetes as a component of their identity are profoundly influenced by social contexts and the societal meanings attached to diabetes,” Marianne Vie Ingersgaard explains.

“Some young people accept diabetes as an integrated part of their identity without overshadowing other important self-defining aspects. Those with an accepting identity recognise diabetes as a part of who they are without letting it dictate their entire self-perception. In contrast, some reject diabetes as a component that defines their identity, viewing it as a threat to who they are. Others may feel their identity is engulfed by diabetes. Consequently, they define themselves solely in terms of it, compromising other important aspects of who they are. Finally, others may feel ‘enriched’ by their diabetes, viewing it as the cause of self-growth, strengthening them as individuals, and leading to positive life changes. The ‘Danish Illness Identity Questionnaire’ (IIQ-DK), which I validated, measures the level of acceptance, rejection, engulfment, and enrichment, respectively,” explains Marianne Vie Ingersgaard.

Marianne elaborates on how identity formation is influenced by social contexts: “One noteworthy finding from my qualitative study is that young individuals distinguish between their ‘personal inside’ and their ‘social outside’ when it comes to diabetes. They readily acknowledge that diabetes exerts a profound impact on various aspects of their lives, including their thoughts, actions, lifestyle choices, and emotional experiences. Consequently, they perceive diabetes as a significant component of their identity, extending beyond its mere biological presence in their bodies. However, they exhibit hesitancy when it comes to incorporating diabetes into their social identity, which refers to how they present themselves to the external world. They often take deliberate measures to keep their social identity separate from diabetes, driven by concerns about potential misunderstandings. They fear being perceived as different from their peers, possibly unable to partake in the same activities, and they worry that negative stereotypes associated with diabetes might become ingrained in others’ perceptions of them. This intricate interplay between personal and social identity underscores the profound impact of societal attitudes and the need for a nuanced understanding of how young individuals with diabetes navigate their sense of self in the context of the condition.”

Deserves Attention in Future Research

It seems that there is much more to explore on the subject of identity formation and diabetes, as proven by Marianne Vie Ingersgaard’s research.

“The insights derived from my PhD study emphasize the need to consider and address identity-related aspects, alongside well-established psychosocial factors such as diabetes distress,  when developing interventional strategies to improve the psychosocial well-being and self-management in young individuals with type 1 diabetes, “says Marianne Vie Ingersgaard.

Marianne did her PhD at Steno Diabetes Center Copenhagen and the National Institute of Public Health at the University of Southern Denmark with a PhD scholarship from the Danish Diabetes Academy. She has transitioned into a postdoctoral position at Steno Diabetes Center Copenhagen in the department of Prevention, Health Promotion, and Community Care, where she continues her work on diabetes management research.

“Looking ahead, I aspire to further advance my research endeavours, continuing to make contributions to the field of diabetes management and its profound impact on the overall well-being of individuals, particularly the younger population,” says Marianne Vie Ingersgaard.

Contact information

Marianne Vie Ingersgaard
Postdoc, Steno Diabetes Center Copenhagen

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