'It's a Balancing Act'. A Qualitative Study of the Everyday Management of Type 1 Diabetes Among People with Unexplained Persistent Hyperglycaemia.

Abstract

Background: Despite advances in diabetes care, many people with Type 1 Diabetes (T1D) still experience persistent hyperglycaemia, leading to reduced quality of life and increased risk of long-term complications. For some, this hyperglycaemia is linked to factors like co-morbidities, socio-economic challenges, or low health literacy. However, for many, persistent hyperglycaemia remains clinically unexplained, indicating a gap in understanding the contributing factors.

Aim: To explore the lived experiences and everyday management of T1D among adults with clinically unexplained persistent hyperglycaemia (HbA1c ≥ 70 mmol/mol), with the goal of informing caring practices that support better health outcomes.

Methods: Using an anthropological approach, we conducted in-depth interviews with 19 adults. The interviews were digitally recorded and transcribed. Data was analysed using reflexive thematic analysis.

Results: The analysis identified four themes: (1) 'Embodied diabetes' described how the risk of low blood sugar shaped daily management as it could impact productivity and social interactions, highlighting the need for empathetic support. High levels were more tolerable, yet frustratingly unpredictable and perceived as 'unruly.' (2) 'Inescapable diabetes' described diabetes as a presence that had to be navigated alongside life's complexities and how the participants sought to balance immediate concerns that were often prioritised over perfect glucose levels, underscoring the importance of holistic care approaches. (3) 'Desire for normalcy' described the weighing between concealment and disclosure of T1D and the detailed planning required to integrate diabetes seamlessly into everyday life, suggesting a need for personalised care strategies. Finally, (4) 'Diverse interactions with the diabetes clinic' described experiences from sincere interactions to feelings of resignation. Clinical advice was sometimes dismissed due to perceived ineffectiveness or lack of relevance, indicating opportunities for improving patient-provider relationships.

Conclusion: This study highlights the complexities of daily diabetes management and emphasises the importance of a caring and holistic approach that incorporates the myriad obligations, concerns and desires that adults with T1D navigate and prioritise alongside or in competition with their disease. By understanding these lived experiences, healthcare professionals can better support patients through patient-centred care practices that address both medical and personal dimensions of living with T1D.