“I think we know more than our doctors”: How Primary Caregivers Manage Care Teams with Limited Disease-related Expertise

Healthcare providers play a critical role in the management of a chronic illness by providing education about the disease, recommending treatment options, and developing care plans. However, when managing a rare disease, patients and their primary caregivers often work with healthcare systems that lack the infrastructure to diagnosis, treat, or provide education on the disease. Little research has explored care coordination practices between patients, family members, and healthcare providers under these circumstances. With the goal of identifying opportunities for technological support, we conducted qualitative interviews with the primary caregivers of children with a rare neurodegenerative disorder, ataxia-telangiectasia. We report on the responsibilities that the primary caregivers take on in response to care teams’ lack of experience with the illness, and the ways in which an online health community supports this care coordination work. We also describe barriers that limited participants’ use of the online health community, including the emotional consequences of participation and information overload. Based on these findings, we discuss two promising research agendas for supporting rare disease management: facilitating primary caregivers’ care coordination tasks and increasing access to online community knowledge.