Growing up with type 1 diabetes in the family may make the threat feel more familiar than frightening, with new research showing how lifelong experiences and beliefs can lead people to downplay both their risk and the significance of screening results.
Study: “This is going to be a nice-to-know, not a need-to-know”: absence of concern – a qualitative study of risk perception in early detection of type 1 diabetes. Image credit: Krakenimages.com/Shutterstock.com
A new study published in Frontiers in Clinical Diabetes and Healthcare reports that pre-existing personal and familial narratives shape risk perception among first-degree relatives, influencing how they interpret type 1 diabetes early detection screening results.
Detecting diabetes risk before symptoms appear
Type 1 diabetes is an autoimmune disease in which the immune system targets and destroys insulin-producing pancreatic beta cells. This irreversible process leads to insulin deficiency and chronically elevated blood glucose levels. Although the condition mostly affects children and adolescents, it can develop at any age.
Recent advances in immunomodulatory therapies, such as teplizumab, which can delay the clinical onset of type 1 diabetes, have increased global efforts for early detection and timely intervention.
The detection of islet autoantibodies in the blood has emerged as a strategy for identifying type 1 diabetes in its preclinical stages before its clinical onset. The presence of one autoantibody is associated with an approximately 15% risk of developing type 1 diabetes within 10 years, while two autoantibodies are associated with an almost 85% risk over 15 years.
Early detection not only offers medical advantages, but also provides individuals and families with time to prepare themselves psychologically and practically for a potential life with the disease.
The lifetime risk of developing type 1 diabetes is significantly higher among first-degree relatives (parents, siblings, and children) of individuals with the condition. However, adult individuals from high-risk families often underestimate their personal risk, whereas a family history of diabetes may increase their feelings of vulnerability.
The current study aimed to explore how adult first-degree relatives of individuals with type 1 diabetes perceive risk and interpret screening results when participating in an early detection program.
Family narratives shape how relatives perceive diabetes risk
The researchers interviewed 28 young and middle-aged adult participants who were participating in DiaUnion, a Danish early detection program for type 1 diabetes. Fourteen were awaiting their results, seven had received a negative result, and seven had received a positive result indicating one or more autoantibodies.
The semi-structured interviews explored the emotional, psychological, and practical challenges experienced by first-degree relatives of people with type 1 diabetes when participating in this program. The participants were also asked how they perceive and interpret their risk of developing type 1 diabetes.
The thematic analysis of the collected information identified three themes: narrative understanding of diabetes based on parental experience; general understanding of diabetes; and interpretation of the screening result.
Childhood experiences shape perceptions of diabetes severity
The first theme revealed that children whose parents openly discuss and manage their diabetes throughout childhood tend to become familiar with the condition and express calmness about their own risk of developing the condition.
However, the theme also raised a potential concern about selective or protective disclosure, whereby some parents may have shielded their children from more difficult aspects of the disease. This shielding may prevent first-degree relatives from getting a full picture of the disease, potentially increasing the risk of underestimating its seriousness.
The children whose parents had described type 1 diabetes as a severe disease with many negative effects appeared to be more worried. As a result, they became more attentive to factors they believed could increase or decrease their chances of developing the disease.
The researchers also identified family experiences in which diabetes had been hidden or treated as taboo, linking the condition with shame or stigma. In some cases, encouraging participation in early detection could therefore be understood as an attempt to break with these family narratives.
One common perception among first-degree relatives was that the disease was temporary. Several participants reported that their parents had early-onset diabetes, and since they are now adults, they believed they had passed the risk period of developing the disease. This misunderstanding may have arisen from parental narratives, or from a lack of general knowledge about the disease.
Lifestyle beliefs create a misleading sense of control
The second theme indicated that first-degree relatives' perceptions of disease risk are often shaped by personal beliefs rather than biomedical knowledge. Some participants underestimated the relevance of hereditary risk while placing undue emphasis on lifestyle, with several believing that healthy eating and exercise could reduce their chances of developing type 1 diabetes.
The researchers suggested that adopting healthy habits may serve not only as an attempt to prevent the disease, but also as a coping strategy that gives participants a sense of control over an uncertain risk. However, while healthy lifestyle behaviors have broader health benefits, the authors noted that there is currently no evidence that they prevent the onset of type 1 diabetes.
Many participants also described type 1 diabetes as manageable and not particularly severe, particularly when compared with other diseases. Some appeared to view advances in treatment as making the condition highly manageable and perhaps even close to curable.
Screening results are often downplayed or misunderstood
The third theme indicated that first-degree relatives often compare diabetes with diseases they perceive as more severe, such as cancer, and thereby frame type 1 diabetes as a manageable condition. As a result, they may underestimate the complexity and daily demands of living with type 1 diabetes and think that the early detection result may be useful but not necessary.
The first-degree relatives who tested positive for one autoantibody often expressed a sense of nonchalance, tending to minimize the result and position themselves outside what they perceived as the “real” risk group. The researchers suggested this could reflect misunderstanding of the information provided, how risk was communicated, or a coping strategy for maintaining a sense of control.
More broadly, screening did not appear to generate ongoing worry for many participants. Several reported giving the test little thought while awaiting the result, with some even forgetting about it until their result arrived. The researchers suggested that this low level of concern could reflect the participants' familiarity with type 1 diabetes and their tendency to view it as manageable.
The first-degree relatives who tested negative often treated the result as conclusive. However, in reality, the screening offers only a point-in-time indication rather than a comprehensive evaluation of long-term risk.
Personalized communication could make screening more meaningful
The study reveals that the perception of first-degree relatives about type 1 diabetes risk is largely shaped by pre-existing personal and familial narratives, which influence how they interpret screening results.
These findings challenge the general hypothesis that risk information helps increase awareness and psychological preparedness. Instead, these findings highlight the need for considering more personalized approaches in early detection programs that account for participants’ existing frameworks of understanding and coping.
Importantly, the researchers cautioned that an absence of expressed concern or requests for support should not necessarily be interpreted as an absence of psychological burden. Concerns may instead be managed through normalization, cognitive reframing, perceived control, and other coping strategies, making them less visible. Early detection programs may therefore need to proactively address these underlying processes rather than relying solely on participants to express a need for support.
Short voice recordings could screen patients for type 2 diabetes