Lived Experiences of Newly Diagnosed Type 1 Diabetes Mellitus Children and Adolescents in Uganda

Abstract

Introduction The first-year post-diagnosis is the most challenging and stressful period in the lifetime of a young child and adolescent living with diabetes, given the adjustments that are meant to be adopted. Therefore, psychosocial factors affecting newly diagnosed children and adolescents need to be well understood and children supported to improve treatment adherence. However, evidence concerning psychosocial experiences among young patients with diabetes is scant in Uganda. This study explores the perceptions and experiences of newly diagnosed children and adolescents in Uganda. Methods A qualitative exploratory design was employed. We recruited participants aged 6 to <18 years diagnosed within twelve months from three study sites: Mulago National Referral Hospital, Wakiso HCIV, and St Francis Nsambya Hospital. Twenty in-depth interviews were conducted, and textual data were analysed thematically using a framework approach. Results We identified five themes: battling with symptoms, emotions at diagnosis, challenges in coping with diabetes management, changes I have made, and positive outcomes registered. The analysis found that young people living with diabetes experience a new world of adjustments, including insulin therapy, routine blood glucose monitoring, and dietary changes that are often difficult to deal with, especially in the first year after diagnosis. Discussion Continuous psychosocial support to newly diagnosed young children and adolescents with T1DM is vital. Addressing psychosocial challenges may improve adherence to treatment regimens. Conclusion Our findings have demonstrated the mixed experiences of newly diagnosed young children and adolescents living with diabetes, from anxiety and stigmatization to independence.

Beyond Therapeutic Adherence: Alternative Pathways for Understanding Medical Treatment in Type 1 Diabetes Mellitus

“…These factors include emotional well-being, social support, self-efficacy, and personal motivation. Others suggest that it is necessary to understand the first year of diagnosis, such as the battle with symptoms, the emotions associated with the diagnosis, the challenges in the management of diabetes, and the positive outcomes recorded by patients [ 64 ]. In turn, through the development of a substantive theory, some studies find that at the center of the experience of giving meaning to the disease is the meaning of “becoming myself again”, which involves the reconstruction of interactions, emotions, and definitions of the disease, implying changes in the self of the patients.…”