Understanding the burden faced by families of children living with Type 1 diabetes mellitus in Indonesia: A multidimensional study on the financial, social, and psychosocial aspects.

Abstract

Type 1 diabetes mellitus (T1DM) is a lifelong disorder that affects all aspects of the lives of children and their families. A Health Needs Assessment (HNA) survey was conducted at two diabetes camps in Batu, East Java, and Parung, West Java, to evaluate the challenges and burdens faced by families of children living with T1DM in Indonesia. A total of forty-one respondents, comprising parents/caregivers, participated in the HNA. Most respondents had to pay for diabetes-related expenses, such as insulin (31.7%), self-monitoring blood glucose (31.7%), needles and syringes (63.4%), travel expenses (97.6%), and additional laboratory examinations (24.4%). The majority of the children in this study attended school (97.6%) and most liked going to school (95%). Diabetes camps were reported to be very helpful (95.1%) for gaining more knowledge and social support within the community. A family-centered approach focusing on community support and individualized solutions is required to strengthen support, share resources, increase knowledge, and ultimately improve the quality of life of children and families living with T1DM.