CONTEXT: Caregivers to children with type 1 diabetes (T1D) face many challenges related to self-management demands. Social media has become a significant means for families to obtain peer support, skills, and experience to help meet these demands, which are often outside the medical team's capacity to provide. Blog analysis allows unique insight into these challenges, which can help primary care physicians (PCPs) provide additional resources and support.
OBJECTIVE: 1) To better understand the successes and challenges faced in raising a child with T1D. 2) To assess blogs for inaccurate clinical information or advice.
DESIGN: Exploratory qualitative study employing inductive thematic analysis of T1D-focused caregiver blogs.
SETTING: Three blogs and associated comments authored by caregivers to children with T1D. Participants: Blogs were identified by systematic search strategy. Two blogs were authored by mothers, one by a father, representing one- and two-parent families.
RESULTS: Themes: 1) Fear and worry are common, beginning at diagnosis; these emotions persist but change in ensuing years. 2) Caregivers experience unrelenting physical and emotional burdens in managing T1D. 3) Using advanced diabetes technology generally helps with management, but device alarms can also be intrusive and increase the sense of burden. 4) Many caregivers are especially bothered by their perception that T1D diagnosis is often missed and/or delayed. 5) Despite the intense burdens that they experience, caregivers demonstrate resilience, often through advocacy efforts and peer support through blogs.
CONCLUSIONS: Blogs allow insight into the day-to-day issues faced by families living with T1D and other chronic diseases. PCPs often care for parents of children with chronic diseases, and deeper understanding of their challenges can provide insight for offering support and guidance. Referral to high quality caregiver blogs can be a fast, easy, and inexpensive tool, as can encouraging families to become active in advocacy efforts.
