“We went home knowing nothing”: Parental burden of caring for children with type 1 diabetes mellitus in a challenging context of China

Abstract

Purpose

To explore parents' experiences of caregiver burden while caring for children with type 1 diabetes mellitus (T1DM) in China.

Design and methods

Twenty-four parents of children with T1DM were recruited for individual interviews using purposeful sampling in China. The data were analyzed independently by two authors using thematic analysis.

Results

1) Mental burden related to a lack of experienced physicians at local level 2) Financial and maternal burden associated with inadequate health insurance and social services 3) Social burdens for parents navigating school environment 4) The intertwining of psychological burdens with caregiving challenges.

Conclusions

Parents experience multidimensional caregiver burdens arising from the broader social context of insufficient support for children with T1DM and their families. Factors contributing to these burdens include inadequate medical support for T1DM, financial strain from expensive medical devices and consumables, and limited awareness and support from schools. Ultimately, these factors lead to a persistent psychological burden. Addressing the caregiver burden requires not only psychological support but also a critical examination of structural barriers and the provision of professional assistance across various contexts.

Practice implications

Health professionals, teachers, school administrators, and policy makers should recognize their critical roles in supporting parents and children affected by T1DM. There is a need for training programs, inclusive medical insurance, and supplementary care services to alleviate the burdens parents face in managing diabetes for their children.