A Novel Approach to Identifying Barriers and Facilitators in Raising a Child With Type 1 Diabetes: Qualitative Analysis of Caregiver Blogs

BACKGROUND: With rising incidence of type 1 diabetes (T1D) diagnoses among children and the high levels of distress experienced by the caregivers of these children, caregiver support is becoming increasingly important. Historically, relatively few support resources have existed. Increasing use of the Internet, and blogs in particular, has seen a growth of peer support between caregivers of children with T1D. However, little is known about the type and quality of information shared on T1D caregiver blogs. At the same time, the information on such blogs offers a new window into what challenges and successes caregivers experience in helping to manage their children’s T1D. OBJECTIVE: The purpose of this study was to (1) analyze blogs of caregivers to children with T1D to better understand the challenges and successes they face in raising a child with T1D, and (2) assess the blogs for the presence of unsafe or inaccurate clinical information or advice. METHODS: An inductive thematic qualitative study was conducted of three blogs authored by caregivers of children living with T1D, which included 140 unique blog posts and 663 associated comments. Two physician investigators evaluated the blogs for presence of clinical or medical misinformation. RESULTS: Five major themes emerged: (1) the impact of the child’s diagnosis, (2) the burden of intense self-management experienced in caring for a child with T1D, (3) caregivers’ use of technology to ease their fear of hypoglycemia and impacts that device alarms associated with this technology have on caregiver burden, (4) caregivers’ perceptions of frequently missed or delayed diagnosis of T1D and the frustration this causes, and (5) the resilience that caregivers develop despite the burdens they experience. Misinformation was exceedingly rare and benign when it did occur. CONCLUSIONS: Blog analysis represents a novel approach to understand the T1D caregiver’s experience. This qualitative study found many challenges that caregivers face in raising a child with T1D. Despite the many barriers caregivers face in managing their children’s T1D, they find support through advocacy efforts and peer-to-peer blogging. Blogs provide a unique avenue for support, with only rare and benign findings of medical misinformation, and may be a resource that diabetes care providers can consider offering to families for support.