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203,203 studies31 sourcesUpdated 33 min ago
Peer-reviewedCC BY 4.0PLOS One

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

  • Sarah Covasso1
  • Giulia Paoletti2
  • Mathie Lorrot3
  • Sophie Dugué4
  • Stéphanie Cardin5
  • Costanza Puppo6
  • Anaïs Chosidow7
  • Alice Raffetin
7 affiliations
  1. 1Department of Infectious Diseases, Tick-Borne Diseases Reference Center, Paris and Northern Region, Intercommunal Hospital of Villeneuve Saint Georges, Villeneuve-Saint-Georges, France
  2. 2Department of Psychology, Tick-Borne Diseases Reference Center, Paris and Northern Region, Intercommunal Hospital of Villeneuve Saint Georges, Villeneuve-Saint-Georges, France
  3. 3Department of Pediatrics, University Hospital of Armand Trousseau, Paris, France
  4. 4Department of Pediatric pain and migraine, University Hospital of Armand Trousseau, Paris, France
  5. 5Inserm Unity 1290 RESHAPE, University of Lyon 2, France
  6. 6Department of Pediatrics, Tick-Borne Diseases Reference Center, Paris and Northern Region, Intercommunal Hospital of Villeneuve-Saint-Georges, Villeneuve-Saint-Georges, France
  7. 7Inserm Unity U955, GEIC2O, Mondor Institute of Medical Research, University Paris-Est Créteil (UPEC), Créteil, France
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Abstract

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

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Cite

BibTeXRIS
BibTeX
@article{covasso2026perceptions,
  title = {{Perceptions, social representations, and experiences of suspected Lyme borreliosis among adolescents and their parents in France: A multicenter study}},
  author = {Sarah Covasso and Giulia Paoletti and Mathie Lorrot and Sophie Dugué and Stéphanie Cardin and Costanza Puppo and Anaïs Chosidow and Alice Raffetin},
  journal = {PLOS One},
  year = {2026},
  month = sep,
  doi = {10.1371/journal.pone.0357185},
  url = {https://doi.org/10.1371/journal.pone.0357185},
  note = {CC BY 4.0},
}
RIS
TY  - JOUR
TI  - Perceptions, social representations, and experiences of suspected Lyme borreliosis among adolescents and their parents in France: A multicenter study
AU  - Sarah Covasso
AU  - Giulia Paoletti
AU  - Mathie Lorrot
AU  - Sophie Dugué
AU  - Stéphanie Cardin
AU  - Costanza Puppo
AU  - Anaïs Chosidow
AU  - Alice Raffetin
PY  - 2026
DA  - 2026/09/21
JO  - PLOS One
DO  - 10.1371/journal.pone.0357185
UR  - https://doi.org/10.1371/journal.pone.0357185
AB  - 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
SN  - 1932-6203
ER  -