Home-based health management needs of children with type 1 diabetes mellitus in China: an information platform-based qualitative study

Background Type 1 diabetes (T1DM) is an autoimmune disease with aberrant immune responses to specific β-cell autoantigens, resulting in insulin deficiency. The problems encountered by caregivers and patients in home-based management of it were analyzed based on data collected from the T1DM Doctor-Patient Communication WeChat platform at a single children's hospital in Shanghai, China. Methods A qualitative study using conventional content analysis was conducted. We collected data from WeChat to conduct this phenomenological research. The questions and comments from parents (or primary caregivers) on home-based health management were analyzed to identify common themes and content. Results Total 10,938 original messages sent by 104 parents of pediatric T1MD patients were collected. Five themes were emerged in this study: insulin use, nutritional management, exercise management, medication management, and caregiver burden management. Conclusions Family members are the main providers of home-based disease and health management for pediatric T1DM patients in China. These caregivers need to handle a diverse variety of problems related to health management, including adjustment of insulin use in case of abnormal blood glucose level, poor nutritional control and management, control of exercise amount and time, drug selection, combined use of different drugs, and the burden on their own psychological well-being. Professional health guidance to address these problems is needed to strengthen home-based disease and health management of T1DM in China.