Perceptions, social representations, and experiences of suspected Lyme borreliosis among adolescents and their parents in France: A multicenter study

Objective The variability of Lyme borreliosis (LB) clinical manifestations can complicate diagnosis and lead to prolonged periods of medical uncertainty. There is limited knowledge about how children experience and perceive LB. This study aimed to examine the perceptions, social representations, and experiences of LB among adolescents and their parents. Methods Conducted from March to June 2023, this multicenter qualitative study used grounded theory and a dyadic approach with semi-structured interviews to identify themes and develop a theoretical model, adhering to COREQ guidelines. Adolescents and their parents were recruited from pediatric clinics, infectious disease pediatric consultations, and a pediatric pain center, ensuring diverse representations (age, gender, region, and serology results). Results We interviewed 19 people. A total of 809 codes were identified and organized into three themes: (1) A personal experience of LB influenced by family history; (2) Ambivalence toward medical discourse; (3) A need for improved knowledge about LB to prevent misinformation. Adolescents expressed a range of emotions, including confusion about the nature of LB, disinterest in the disease itself, and a lack of clarity about their care pathways. They also expressed fear that LB, perceived as “dormant,” could resurface in the future and harm them. Discussion The study revealed contrasting experiences of LB between adolescents and their parents, with familial history and external influences shaping adolescents’ and parents’ perceptions, potentially fostering doubts, misunderstandings, and conflicts. Strengthening communication and the role of general practitioners in coordinating with specialized centers is crucial to streamline care pathways and reduce misinformation about LB. Clinical trials registration number: NCT05678478; https://clinicaltrials.gov/study/NCT05678478?cond=Lyme%20Borreliosis&term=adolescent&rank=2