"I Think We Know More Than Our Doctors": How Primary Caregivers Manage Care Teams with Limited Disease-related Expertise

Maia Jacobs, Galina Gheihman, Krzysztof Z. Gajos, and Anoopum S. Gupta



Current models of patient-provider relationships in chronic disease management assume that healthcare providers possess expertise in the patient's diagnosis and trajectory. When managing a rare disease, patients and caregivers often work with care teams who are unfamiliar with the disease or inexperienced in its treatment. A deeper understanding of these relationships is needed to identify opportunities for support under these circumstances. We conducted qualitative interviews with parental caregivers of children with a rare neurodegenerative disorder, ataxia-telangiectasia. We found that when working with care teams inexperienced with the disease, parents must take on additional responsibilities beyond daily health management, including educating their care teams, initiating changes to their child's healthcare, and preventing adverse clinical events. Online community support can serve as a valuable resource to support parents in assuming these responsibilities. However, the emotional consequences of participation and information overload have hindered parents' community engagement. Therefore, two important research agendas for supporting this community are through the development of tools that facilitate parents' care coordination roles and tools that increase access to online community support.

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Maia Jacobs, Galina Gheihman, Krzysztof Z. Gajos, and Anoopum S. Gupta. "i think we know more than our doctors": How primary caregivers manage care teams with limited disease-related expertise. Proc. ACM Hum.-Comput. Interact., 3(CSCW):159:1-159:22, November 2019.