2.1. Study design

To explore the perceptions, representations, and experiences of LB among adolescents and their parents, a qualitative approach based on semi-structured interviews using grounded theory [25,26] was chosen. This method was deemed most suitable for understanding their agency, viewpoints, and experiences [25–27]. To examine how representations are developed within the family, considered as a system, a dyadic approach was adopted [28–30]. Family interactions were analyzed in terms of their impact on health behaviors and the representations that emerged. In the parent-child relationship, the reciprocal influence of coping strategies adopted to manage the overall experience of illness can also be identified [30]. The items from the COREQ (Consolidated Criteria for Reporting Qualitative studies) checklist were followed to ensure the quality of the method and analysis [31].

2.2. Study population and recruitment

This multicenter study was conducted at the general pediatrics department and at the pain management department of two different university and intercommunal hospitals (March-June 2023). All are involved in the activities of a TBD Reference Center. Teenagers were eligible for inclusion if they were aged ≥12 years and ≤17 years, accompanied by a parent or legal guardian, living in mainland France, and either suspected of having LB, diagnosed with LB, or having had LB in the past. There was no objection to their participation from either the adolescents or their parents. Exclusion criteria included lack of proficiency in spoken French by the adolescents or their parents, or individuals unable to express their consent to participate. Participants were informed about the study during their regular medical appointments. Adolescents were selected to ensure maximum variation in opinions, based on the following criteria: age, gender, exposure to ticks, rural or urban residence, suspected or confirmed LB, and the duration of symptoms (< 6 months or > 6 months). Recruitment continued until no new insights emerged in the interviews (data saturation). As a result, the number of participants was not predetermined.

2.3. Survey approach and data collection method

Data were collected through semi-structured individual interviews conducted in person, by phone, or videoconference, following a predefined interview guide [26,31], based on the study’s objectives, relevant literature, and a reflexive approach. The interview guide addressed the debate surrounding LB awareness in France, its impact, and how it influences social perceptions. It also explored how parents’ experiences with LB affect those of the adolescent, as well as the various reactions the questions might elicit from participants. The interview guide was developed around 10 themes detailed in S1 Table. First, it was developed by SC (anthropologist) and GP (psychologist), and pre-tested by CP (researcher in social psychology) and AR (infectious diseases physician). Then it was assessed by pediatricians (ML, AC, SD). Finally, the interview guide was pre-tested with three families to verify the ease of understanding of the questions, their sequence, and to avoid repetition. These exploratory interviews were included in the analysis, as their structure did not differ.

According to the dyadic method [29,32], three interviews were conducted per family (≈1 hour): first, the adolescent, second the parents, and third both. Divergent or conflicting viewpoints between participants were considered analytically valuable rather than problematic. First, interviews were conducted separately to avoid constrained expressions or sensitive points of view. Second, interviews were conducted jointly to capture interactional dynamics, including disagreement, negotiation, and the co-construction of meaning. Participants were encouraged to express their perspectives freely, and no attempt was made to reach consensus during the interviews. When necessary, the interviewer ensured balanced participation to avoid dominance by one individual.

The interviews were recorded on a Dictaphone, if the permission was obtained, with parallel note-taking to ensure accurate transcription of the discussions [31]. At the beginning of each interview, the adolescent was asked whether he/she preferred to be addressed informally or formally [31]. During the interviews, an oral style was maintained, with main questions and follow-up questions. The interviews were then transcribed and pseudonymized. Participants were invited to review the transcripts to ensure the accuracy of their statements. Data collection and analysis occurred in parallel, following an iterative process with constant comparison. The interview guide was revised as analysis of the previous interviews progressed.

2.4. Data analysis

The data were recorded in an Excel file secured with an access code. To familiarize with the raw data, a word cloud was created using WordArt (version 4.7.7), answering the question: “Can you give me three words that come to mind when you think about LB?” Then, the analysis was conducted based on grounded theory [25,26]: (i) Coding raw information; (ii) Categorizing the identified codes to group them into themes; (iii) Relating these categories to identify the predominant themes; (iv) Connecting the study’s objectives to the findings, further defining the focus of the research; (v) Establishing functional relationships among the results; (vi) Theorizing to reinforce the concepts emerging from the previous stages.

During analysis, discrepancies between participants within each dyad were explicitly examined using a comparative intra-dyadic approach. Rather than reconciling opposing accounts, these differences were coded and interpreted as reflecting distinct experiential, relational, or epistemic positions. We paid particular attention to how disagreements were formulated and managed within the interactions. A latent thematic analysis was conducted to identify underlying meanings and assumptions beyond the explicit content of the exchanges [33,34]. This approach enabled a nuanced understanding of participants’ perspectives while preserving the complexity of relational dynamics.

The analysis was conducted independently by a practicing psychologist (GP) and an anthropologist (SC). This triangulation enabled to deepen the exploration of different dimensions within the results. At the end of the analysis, the findings were shared with the participants to gather their feedback. Translation of the citations was performed by AR who is an English speaker, and then reviewed by a native speaker.

2.5. Ethics

The study received approval from the local ethics committee of the Intercommunal Hospital of Créteil, number 2023-03-02. Informed and written consent was obtained from each participant before inclusion in the study, after providing an information sheet and verifying its proper understanding by the adolescents and their family. Patients were recruited between March 2^nd, 2023 and June 20^th, 2023.

3.1. Theme 1: A personal experience of LB influenced by family history

Parents often perceived LB as an “incurable” (P5), “sneaky” (P3), and “dangerous” (P6) condition, based on their own experiences either as patients or caregivers: “My husband and I had Lyme disease too” (P5). Some parents had an ambivalent perception of LB: “[LB] is at the same time, it’s not a serious illness, like in my case thanks to good care, honestly, I didn’t feel anything, I took two weeks of antibiotics and that was it. But it can also be really debilitating I think, with some really severe forms. Paralysis, stories of people in wheelchairs…” (P4). LB was also seen as a “subject of debate” (P1) as it is “not so well known with a lot of crazy theories” (P1). In contrast, most adolescents had a relatively non-traumatic experience with the illness: “I was never really worried. Sometimes I even forgot I had it, so there you go. I really didn’t care about it at all, actually.” (A10). Table 3 illustrates some opposite codes between adolescents and their parents. Although the experiences of parents and adolescents were different, key elements emerged:

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Table 3. Opposite codes between adolescents and parents.

https://doi.org/10.1371/journal.pone.0357185.t003

1. -. A shared perception of LB as mysterious and dormant, with the potential to suddenly impact them in the future: “Maybe in the future, LB could have a significant impact. Because right now, I might have gotten used to it and don’t perceive it” (A7). Some adolescents emphasized the role of narratives, whether accurate or based on rumors, shared by the media or their social circles: “I heard some rumors... it could completely paralyze me” (A6).
2. -. The weight of family inheritance and medical history sometimes led to feelings of abandonment by healthcare professionals or a lack of understanding: “ It’s all a bit unclear, really! And you get the feeling that… well, that you’re not necessarily taken seriously. It’s psychosomatic, fine! But that doesn’t cover everything!” (P7). For adolescents, it leads to concerns that their complaints might be doubted by their parents. Nonetheless, all the parents expressed unwavering support for their child.

3.2. Theme 2: An ambivalent experience of medical discourse

All the families seemed satisfied with their medical consultations at the two hospitals involved in our study and with the information they received. However, this information was often questioned for several reasons:

1. -. Discrepancy between pediatric and alternative care approaches was noticeable between the simplicity of the care proposed at specialized centers compared to the one offered in alternative care paths: “We even did, uh, a vet test! We even had a third test, another one! that we sent to Germany,” “He had given him a list of medications, quite impressive! He had to take at least ten to fifteen every day” (P8). An adolescent mentioned a lack of understanding regarding her alternative treatment and the absence of improvement of her condition: “Since I was still tired after two years, it was [my father] who told me to stop with the Lyme doctor, and he referred me to the reference center.” (A1) Four families had chosen these alternative care pathways: F1, F2 and F7 consulted “Lyme doctors” with non-recommended treatments and diagnostic tests performed in Germany or the USA; F8 used self-medication with vitamins.
2. -. Discontinuation of follow-up in the absence of symptoms was questioned by parents (P4, P5, P6) and they suggested to continue follow-up even if recovery was mentioned: “I’ve never heard that it heals spontaneously!” (P5).
3. -. Destabilizing attitudes of previous doctors was responsible for doubts: “We’ve just consulted two [general practitioners]. One who took the problem somewhat lightly, and the other who got agitated, so what now?” (P9). Two families (F6 and F8) were destabilized by opposite discourses and a feeling of not being taken seriously.
4. -. Questioning of the medical diagnosis was frequent, particularly the diagnosis of somatoform disorder: “It is a bit unclear, really! And you get the feeling that… that you’re not taken seriously. I strongly believe in psychosomatics! Fine! But it doesn’t explain everything, all the time!” (P7). The term psychosomatic was sometimes interpreted as a label given by doctors to someone who was believed to be fabricating their symptoms. Four families found that diagnosis was unclear (F1, F2, F6, F8).
5. -. Discrepancies within the family were shaped by external influence: “It was a friend of my wife who ‘made’ the diagnosis of Lyme disease, if you will” (P1). Some parents noted that their own parents believed the child was healthy and blamed them for “imagining illness” (P2). Tensions also arose within families over how to care for the child. One parent, dissatisfied with French medical care, turned to an American “Lyme doctor”. Another parent initiated alternative treatment at home, leading to family pressure and emotional strain. Some parents regretted not taking a more active role in their child’s healthcare earlier: “I regret not having taken things into my own hands from the start. It’s hard to feel sidelined and powerless in the care of your own child” (P1). Some adolescents expressed guilt over the situation, feeling burdened by the emotional reactions of their parents: “Honestly, it sucks taking antibiotics every day, seeing your mother cry, hearing that you’re going to die and all that” (A3).

3.3. Theme 3: The need to improve knowledge about LB to prevent misinformation

The majority of respondents expressed concerns about using the internet due to the risk of encountering incorrect information: “So I refuse to look things up on the internet! Because there’s everything and anything!” (P7). Some participants highlighted the spread of “fake news,” which contributes to increased anxiety: “When you see things on the internet, most of the time they’re false! On top of that, there is not necessarily any reliable information, so it makes people more anxious...” (A10). This sense of mistrust toward online information was shared by both parents and adolescents. Others wished that existing reference centers were more prominently promoted, especially online.

Others expressed a desire for increased funding for research on LB, noting that it receives less attention compared to other health crises like COVID-19: “To increase research, we need funding! But to get funding, it needs to be an interesting disease!” (P8).

Both parents and adolescents also emphasized the need to improve public awareness about LB and its prevention, particularly in forested areas frequented by children and school groups: “if we were given more information about [LB] and it was better explained, it could have been reassuring” (A10). Lastly, even though some were familiar with tick prevention due to their outdoor activities, many expressed a lack of knowledge about the risks associated with ticks: “I’ve had lots of ticks on me. I removed plenty of them! And I’ve already seen a bull’s-eye rash (laughs). I didn’t know much more than that!” (A1).

4.1. Grounded theory explanatory model

Based on the results presented, an explanatory model has been proposed to theorize the relationships between perceptions, representations, and lived experiences in the context of suspected LB in adolescents and their families (Fig 4). Adolescents’ experiences and representations were shaped by their emotions, past family experiences, and external influences, such as misinformation and difficulties in verifying sources, the difficult-to-understand diagnosis of LB, and the conflicting discourses.

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Fig 4. Explanatory model of perceptions, social representations, and experiences of adolescents presenting with suspected Lyme borreliosis (LB) and their parents.

https://doi.org/10.1371/journal.pone.0357185.g004

4.2. The invisible disease

A contrasting result appeared in our study: most of the adolescents answered “pain” when asked to provide three words that come to mind regarding LB, yet none had actually experienced pain during their acute LB phase. This finding aligns with data from published pediatric cohorts, where pain and prolonged disabling symptoms are rarely reported [7–9,35,36]. It underscores the influence of external knowledge. Indeed, LB was primarily perceived by our patients as a dormant disease, characterized by an invisible risk, as has been previously demonstrated [10,14,15]. One key argument from patient advocacy groups is that Borrelia burgdorferi is an “invisible” bacterium, imperceptible to the naked eye and even challenging to detect under a microscope. Additionally, serological diagnoses vary depending on the disease’s stage. Therefore, LB is often regarded as an invisible disease due to its difficulty in diagnosis. This silent side, free from symptoms, is associated with the belief that the disease might awaken one day and result in acute and chronic pain, which could be responsible for anxiety—especially as teenagers might fear pain. A systematic review of the literature highlighted that chronic pain engages brain regions critical for cognitive and emotional assessment, implying that this component of pain may be associated with a past medical history of pain, its perception, its representation, and personal experience [37]. Moreover, Albinni et al. demonstrated that acute pain during childhood shapes pain perception and influences its experience in adulthood, sometimes leading to fear and anticipation [38]. The pain experience of parents may also have psychological, behavioral, and developmental consequences on their child’s perception of pain.

4.3. The social representations of LB in the care trajectory

Anglo-Saxon terminology enables to approach illness from various angles: the social perspective, termed “sickness”; the biological perspective, called “disease”; and the individual experiential perspective, known as “illness” [39]. The social representations of LB can sometimes differ between patients and the medical community [10,15,17], because some patients feel that doctors fail to understand their symptoms and refuse treatment, even though their daily lives are significantly impacted [10,14,40]. In response to these persistent symptoms and their lack of management, advocacy groups were started to push for the recognition of “chronic” Lyme disease [41,42], which have become very active on the internet and social media [43,44]. Disease representations are social and cultural constructs that all societies develop to explain the meaning, origin, and causes of illnesses, particularly those that confront death and helplessness [45]. Therefore, it is essential to consider the various social representations of LB that arise from personal and familial experiences, irrespective of beliefs regarding its chronicity [42].

From a psychological standpoint, the unpredictability of a disease has been linked to an increased risk of psychological difficulties in adolescents, e.g., with a parent suffering from cancer [45]. Moreover, adolescents coping with chronic or uncertain illness use problem-focused, emotion-focused, and avoidance strategies [46–48]. Active coping, including problem-solving, emotional expression, and seeking social support, is linked to better adjustment and quality of life, while avoidance often increases stress and anxiety over time. Uncertainty about the illness strongly influences coping choices. Effective coping typically combines acceptance, proactive problem-solving, emotional regulation, and support from family, peers, or healthcare professionals. These findings underscore the importance of interventions that strengthen adaptive coping skills and help adolescents manage the challenges and unpredictability of chronic conditions.

The impact of LB unpredictability was also highlighted in our analysis, conducted through the lens of the sociology of experience [49]. Our study revealed a variety of disease trajectories for LB. The concept of a disease trajectory “associates the evolution of the pathology with all the actions taken over time by various actors involved in managing its course, treating it, and shaping it” [49]. Consequently, the trajectory of care can significantly influence the ways in which LB is perceived.

4.4. Care pathways: from negotiation to satisfaction?

This study demonstrated that, within these challenging consultations, there was a process of negotiation between patients, parents, and healthcare practitioners. The interviews revealed an absence of tension in some families, while others experienced conflict due to differing perceptions and experiences of LB. Family tensions related to the management of LB stem primarily from parents’ frustration with the medical system, disagreements over which treatments to pursue, and the influence of people outside the family. These factors generate internal conflicts and affect the psychological well-being of the children, which aligns with findings from other studies [42,43]. Both parents and children expressed a shared desire for improved communication and better dissemination of information. Co-construction of knowledge about LB took place between parents and doctors and also between adolescents and healthcare providers. Respondents particularly appreciated the patient-centered approach adopted by healthcare practitioners, along with their reassuring demeanor and attentive listening. This point of satisfaction was already described in previous studious in adults with a suspicion of LB [14,15].

4.5. Implications of the study for national public health policy: struggle against misinformation

To improve relationships between patients, adolescents, and healthcare practitioners, it would be beneficial to develop specialized training for doctors on LB and, more broadly, on TBD and post-infectious syndromes (persistent symptoms following infections like LB or COVID-19, or others) [17,50]. This training should also focus on the management of subjective, disabling symptoms, such as pain, to prevent confusion among patients that arises from inconsistent messaging by healthcare professionals. Harmonizing key messages about LB is essential.

Additionally, increasing the spread of information about LB and tick bite prevention among adolescents is necessary to reduce the risk of tick bites and, consequently, the risk of infection [50].

Finally, efforts to share verified information through media, social networks, and the internet are crucial, as these platforms influence norms, thought systems, and values regarding diseases [43,44,51–55]. They also provide visibility for so-called “chronic” diseases. Non-expert resources often “fill the gap” left by healthcare practitioners, sometimes giving individuals the impression that they can address their medical needs independently. These informational materials are frequently perceived as revealing truths and reflecting the population’s anxieties and fears [51]. The internet could also play a role in widely disseminating verified and reliable information. However, the overabundance of information or misinformation can lead to the spread of “fake news” and its associated dangers, particularly highlighted by respondents in our study. It is critical that information shared online be verified, evidence-based, and properly referenced.

4.6. Strengths and limitations of the study

To our knowledge, this is the first study to focus on the perceptions, social representations, and experiences of adolescents consulting for suspected LB. The dyadic approach used in this study was crucial for gaining a deeper understanding of interactions by examining the perspectives of both members of the dyad. It allowed us to identify relational dynamics—how each individual influences and is influenced by the other. This comprehensive and nuanced view of shared experiences helps reveal the complexities of social interactions and individual experiences. A dyadic qualitative approach was adopted, as the phenomenon under study was inherently relational and could not be fully understood through individual perspectives alone. This design enabled the exploration of how experiences, meanings, and decisions were co-constructed through interaction between participants. By conducting joint interviews, we were able to capture relational dynamics in situ, including agreements, disagreements, and negotiation processes, as well as asymmetries in knowledge and positioning. For example, we identified new sub-themes such as sub-theme 1.3, which highlights tensions and family dynamics around diagnosis and management of LB experience.

The dyadic approach also facilitated the identification of convergent and divergent perspectives within the same relational context, providing a more nuanced understanding of participants’ experiences. This was particularly relevant in the context of LB, where diagnostic processes and care pathways are often shaped by interactions between patients, their relatives, and healthcare professionals.

Since, only two fathers participated in the study, it is important to include more input from fathers that could provide a better understanding of the family structure and its role in shaping social representations of LB. This asymmetry might introduce a bias into conclusions about the family’s role in shaping adolescents’ representations of LB.

Furthermore, pilot interviews were included, with some potential bias that we tried to mitigate. The exploratory pre-test interviews did not differ in structure from the subsequent interviews and received equal attention during the analysis. While early interviews may have produced slightly less detailed data due to the interviewer’s developing experience, this limitation was balanced by the inclusion of fathers at this stage, which contributed to a more representative sample. Data saturation was reached at the 18^th participant, highlighting the complexity of the social representations studied using a dyadic approach. The third theme emerged during the first interview. The targeted questions in the guide contributed to the early identification of the themes at the start of the inclusion period. However, they were further explored from different perspectives thanks to these 19 interviews. No new codes appeared after the 18th interview. In line with grounded theory methodology, data collection and analysis were conducted iteratively, with constant comparison guiding the development of categories. While theoretical saturation was sought, it was considered in pragmatic terms. Data collection was stopped when categories were sufficiently developed in relation to the study aims and when additional data no longer contributed substantially new insights. This approach is consistent with the notion of “theoretical sufficiency,” acknowledging that full saturation may be difficult to achieve in practice. We assume that maybe we could have found more codes, especially as this issue is poorly studied (very few studies with adolescents and LB).

The affiliation of the authors with a TBD reference center may have influenced data collection and interpretation that we tried to mitigate. SC conducted the interviews and coded the transcripts. She had no prior contact with the patients in routine care, as she is a researcher in medical anthropology. All interviews were anonymized by SC before being independently coded by GP. Nevertheless, as some of the authors are physicians with expertise in the management LB, the interpretation of the data may have been influenced by their clinical experience. Therefore, a latent analytical approach was adopted to better understand participants’ perspectives in a comprehensive manner and to highlight practical implications for healthcare relationships. We also explicitly identified our own interpretive positions to support a critical analysis of the data, including reflexivity regarding our subjectivity. The perspectives were compared to identify convergences and divergences, leading to a final consensus.