Cycles of (Dis)engagement: A Qualitative Meta-Synthesis of the (Health)Care-Seeking Experiences of Patients with Chronic Symptoms Following Lyme Disease.

Abstract

(Chronic) Lyme disease/post-treatment Lyme disease syndrome ([C]LD/PTLDS) is a post-infection illness that remains contested, resulting in a divergent epistemological landscape (i.e., biomedicine versus alternative medicine). Consequently, (C)LD/PTLDS patients exhaust their (health)care options in their search for symptom relief, falling into cycles of starting and stopping (health)care-seeking. This meta-synthesis reviewed 13 qualitative interview studies representing the (health)care-seeking experiences of 216 (C)LD/PTLDS patients across five countries (i.e., United States, Canada, Netherlands, Australia, France) to examine how communication catalyzes patients' (health)care-seeking behaviors. This study proposes a model of (health)care (dis)engagement, identifying communication as a motor moving patients through (health)care-seeking both within and outside of biomedical models of care. This model extends our understanding of communicative (dis)enfranchisement processes and understandings of why patients disengage and reengage in healthcare-seeking behaviors. Theoretical and practical implications and future directions are discussed.