Experiences and Perceptions of Living With Type 1 Diabetes Among Youth Patients, Parents, and Peers: A Qualitative Study

Background: The incidence of type 1 diabetes mellitus (T1D) among the youth is a global concern. This disease not only poses physical health challenges but also creates emotional and social stigmas. Objectives: The present study aimed to explore the perceptions and experiences of patients with T1D, their guardians, and peers, a topic that has not been extensively investigated in this context. Methods: Between March and July 2023, an in-depth semi-structured interview was conducted with eight T1D patients aged 10–20 at Phramongkutklao Hospital. Seven mothers and a group of close friends were chosen by the patients and were included in another in-depth interview. Additionally, six groups and one in-depth interview involving 20 participants were held with the youth unrelated to T1D patients at an international private school. The interviews covered general knowledge of T1D, perceptions, daily life experiences, relationships with individuals with T1D, and interpersonal relationships. Thematic analysis was used to analyze the data. Results: Patients and parents viewed T1D as both severe and manageable, with significant lifestyle challenges, particularly in diet and daily activities, that influenced their life choices and financial stability. Although the patient experienced sudden adaptation to T1D, they developed effective self-care strategies and appreciated the supportive adjustments made by their family. Furthermore, despite proactive management of their condition through new treatments and enhanced knowledge, they encountered social challenges, including support mixed with misunderstandings and stigma. Meanwhile, guardians experienced stress from caregiving and advocated for better treatment access and support. Peers recognized that patients could lead everyday lives with proper management, but they often lacked a comprehensive understanding of T1D, highlighting substantial gaps in societal awareness. Conclusion: The findings underscore the need for improved diabetes education and support systems to reduce stigma and enhance the quality of life among youth with T1D, particularly through peer and guardian engagement.