Understanding vulnerability and diabetes management in families of children with type 1-diabetes - A qualitative...

This study aimed to explore how vulnerability among children with Type 1 Diabetes (T1D) and their families influences diabetes management. Vulnerability was defined broadly, encompassing mental or physical illness, dysfunctional family dynamics, substance abuse, and socio-economic hardship. The research explored how these factors shaped the lived experiences of families managing T1D.

An explorative, qualitative study with eight families followed over 1.5 years through 40 h of field observations and 29 interviews. A phenomenological-hermeneutical analysis grounded in Ricoeur's theory of narrative and interpretation revealed three overarching themes: 'Like facing a massive wall', 'There is not enough room for diabetes', and 'Give me the skills so I can become independent'. These themes reflect challenges at the systemic, family, and individual levels. Families encountered significant barriers to accessing support, often feeling overwhelmed and resigned. Diabetes care was frequently not prioritised due to competing life challenges, with children sometimes assuming caregiving roles. Children expressed a strong desire for autonomy in managing their condition, while parents sought better knowledge to support them.

Vulnerability significantly impairs effective diabetes management in children with T1D. The findings highlight the need for healthcare professionals to recognise systemic and familial barriers and to tailor interventions accordingly. Collaborative care approaches, realistic goal-setting, and age-appropriate skill-building programs are essential.

The study highlights the need for development of inclusive and responsive diabetes care strategies, focusing on the identification of systemic and familial barriers.