# Online search and activities of parents of children with ADHD: a qualitative study

Marie Bringer, Sylvain Bodard, Ana Moscoso, Anne Revah-Levy, Eric Acquaviva, Richard Delorme, Benjamin Landman, Jordan Sibeoni, Diane Purper-Ouakil

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Marie Bringer, Sylvain Bodard, Ana Moscoso, Anne Revah-Levy, Eric Acquaviva, et al. Online search and activities of parents of children with ADHD: a qualitative study. Child and Adolescent Psychiatry and Mental Health, 2025, 19 (1), 10.1186/s13034-025-00886-5. hal-05029190

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# Online search and activities of parents of children with ADHD: a qualitative study

Marie Bringer<fnref n="1" />,¹⁰*, Sylvain Bodard<fnref n="1" />,²,³,⁴, Ana Moscoso<fnref n="1" />,⁵,¹⁰, Anne Revah-Levy<fnref n="1" />,⁶,⁹, Diane Purper-Ouakil⁷,⁸, Eric Acquaviva<fnref n="1" />,¹⁰, Richard Delorme<fnref n="1" />,¹⁰, Benjamin Landman<fnref n="1" />,¹⁰† and Jordan Sibeoni<fnref n="1" />,⁶,⁹†

**Abstract**

**Background** Parents' perceptions of their child's mental health play a crucial role in their decision to seek mental health services. Additionally, mental health literacy, which includes knowledge about mental health disorders, is essential for identifying, managing, and preventing mental health problems. Online health information searches are a vital resource for parents of children with attention deficit hyperactivity disorder (ADHD)—one of the most common neurodevelopmental disorders—as they provide emotional support and information on risk factors, treatments, and prognosis. However, while online resources are widely used, little is known about how parents navigate, interpret, and integrate this information into their care decisions. This study explored parents' lived experiences of seeking ADHD-related information online, examining how these searches shape their perceptions, decision-making, and interactions with healthcare professionals.

**Method** This qualitative study followed the Inductive Process to analyze the Structure of lived Experience (IPSE) approach. Twenty parents of children with ADHD were recruited using a purposive sampling strategy, and data were collected through semi-structured interviews until saturation was reached. Data analysis was conducted using a descriptive and structuring procedure to identify key experiential themes.

**Results** Data analysis produced three central experiential axes: [1] Internet and the care pathway; [2] Internet knowledge and its supporting role; and [3] Internet and discordant discourse on ADHD between health professionals. Most parents reported using social networks as a crucial source of support, guidance, and mutual aid. Specifically, online parent groups helped them navigate obstacles in the care pathway, manage conflicting perspectives on ADHD, and alleviate feelings of guilt.

**Conclusion** Healthcare professionals and stakeholders should consider the impact of web-based resources on parental decision-making and work towards improving the accessibility and reliability of online health information.

**Keywords** ADHD, Family, Mental health knowledge, Qualitative study

Full list of author information is available at the end of the article

<footnote n="1">¹Benjamin Landman and Jordan Sibeoni have contributed equally to this work.</footnote>

<footnote>*Correspondence:
Marie Bringer
marie_b bringer@hotmail.fr</footnote>
**Introduction**

Attention deficit hyperactivity disorder (ADHD) is a neu-
rodevelopmental disorder characterized by the presence
of developmentally inappropriate levels of hyperactive-
impulsive and/or inattentive symptoms for at least 6
months in different settings [1]. These symptoms have a
direct negative impact on social, academic, and profes-
sional activities [1, 2]. ADHD has a global incidence esti-
mated between 5% and 8% [3] and is associated with a
heightened risk of poor developmental outcomes [4, 5].

Parents of a child with ADHD self-reported higher
rates of psychopathology symptoms than parents of chil-
dren without ADHD (d = 0.39, 95% confidence interval
[0.31, 0.48], p < .001, k = 32) [6]. Parental and familial fac-
tors are associated with the diagnosis and outcomes of
ADHD through multiple pathways, such as direct effects
of adverse parenting practices or shared risk factors [7].
Focusing on parents' experiences is essential since edu-
cational and family modalities influence the affective
coping of children with ADHD [7]. Parent-centered inter-
ventions have greater effects on behavioural symptom
improvement [8] and parents' perception of their child's
mental health status is a predictor and prerequisite for
mental health service use [7–11]. In the context of lim-
ited mental health knowledge, many studies have high-
lighted the role of social support in parents' decision to
seek care [11–13]. Whether before or after the diagnosis
and treatment of ADHD, the issue of health literacy– that
is, the ability of individuals to obtain, understand, and
communicate health-related information necessary to
make informed decisions– remains crucial [14, 15]. For
parents of children with ADHD, mental health literacy is
central, and web resources are one of the main sources of
information used by parents to learn about their child's
mental health challenges [16].

The number of websites focusing on health is expand-
ing rapidly, and several are entirely dedicated to parents
[17, 18]. Before bringing their child to a medical appoint-
ment, more than one in five parents, searched online,
either to seek a diagnosis (52.3%) or to obtain information
on prevention (21.9%) [19, 20]. Most of them reported
the information found online to be useful (57%) and the
accessibility of resources about children's mental health
to be good or very good [21]. However, few parents use
structured strategies for their online research, and many
request the help of health professionals to direct them-
selves to high-quality websites [22]. Web resources are
also used to connect with other people in similar situa-
tions to alleviate the uncertainty and anxiety of parents
about their children's mental health [12, 23]. Parents turn
to the internet to seek information about ADHD, and in
5.9% of situations, this will be their only source of infor-
mation [12]. Together, these elements — parental percep-
tions, mental health literacy, and online health searches

— form a complex but interdependent framework that
highlights the need for accessible, evidence-based online
resources to empower parents, enhance their confi-
dence in managing their child’s condition, and ultimately
improve outcomes for children with ADHD [24]. To date,
only a few studies have explored the online information-
seeking behaviors of parents of children with ADHD [25].
Given the increasing reliance on digital resources for
health-related decision-making, online information has
become a critical tool for families navigating their child’s
diagnosis and care pathway, yet no studies have used a
qualitative approach to explore how parents seek, inter-
pret, and use online information on that matter.

This study therefore aimed to fill this gap by provid-
ing a contextualized understanding of parents’ lived
experiences regarding their online searches and activi-
ties related to ADHD. The purpose was to offer new
insights into the role of online knowledge in shaping
parental decision-making. By exploring parents’ experi-
ences, needs, and challenges in seeking ADHD-related
information online, this research could help inform both
clinical practice and the development of more accessible,
evidence-based digital health resources.

**Methods**

This exploratory qualitative study used the Inductive Pro-
cess to analyze the Structure of lived Experience (IPSE)
approach [26]. IPSE uses a descriptive phenomenological
approach and relies on a constructivist paradigm and an
inductive process to capture individuals' lived experience
and to produce the structure of their experience. Five
stages, described below, guide the research process. This
study report adheres to the COREQ guidelines [27], and a
local ethics committee (Comité d'Evaluation de l'Ethique
des Projets de Recherche de Robert Debré) has approved
all procedures (CEER-RD). This study was conducted in
compliance with the ethical regulations and guidelines
applicable in France for this type of research and popu-
lation [28]. As the participants were parents and not
patients, no additional ethical approvals were required
beyond the standard framework. Written informed con-
sent was obtained from all participants prior to their
involvement in the study. The study occurred in the child
and adolescent psychiatric department of a Parisian chil-
dren's hospital.

**Stage 1: Setting up a research group.** Our research group included a psychiatric trainee (MB) who conducted the interviews, three child and adolescent psychiatrist (CAP) specialists in ADHD (BL, EA, and AM), two CAPs with expertise in qualitative methods (JS and ARL), and a physician from radiology (SB) to avoid confining the results to the sole perspectives of CAPs.

**Stage 2: Ensuring the originality of the study.** Two
group members systematically reviewed the qualitative
and quantitative literature to confirm the study's rel-
evance and originality. They verified that no qualitative
study in France about this specific topic had been con-
ducted among parents of children with ADHD. To ensure
that the other group members could remain inductive
and open to novelty, they had access to this review only
after they had completed the data analysis.

**Stage 3: Recruitment and sampling, aiming for exemplarity.** All parents included in the study had a child with ADHD diagnosed according to Diagnostic and Statistical Manual of Mental Disorders, 5th Edition criteria. A semi-structured interview using the Schedule for Affective Disorders and Schizophrenia for School-Age Children– Epidemiologic Version [29] was used to confirm the diagnosis. Participating parents had to have previously or be currently still seeking information on the internet about their child's condition and had to speak French fluently. We used a purposive sampling strategy with maximum variation [30] to recruit parents who differed by sex, age, family status, duration of child's disease and diagnosis delay, type of treatment, and co-occurring disorders. The CAPs working in the child and adolescent psychiatry department were responsible for identifying and inviting parents to participate in the study. The researchers provided the CAPs with the study design and inclusion criteria, and regular exchanges took place with them throughout the data collection period to ensure sample diversity. After initial recruitment, we specifically asked the CAPs to identify more fathers to balance the overrepresentation of mothers.

Sample size was not defined in advance but estimated
through the principles of “information power” [31],
based on the criteria, quality of dialogue during the inter-
view, the aim of the study and the sample specificity Data
collection and analysis were considered complete when
the research group considered that the findings obtained
provided a sufficient explanatory framework for the data
collected, that is reaching theoretical sufficiency [32].

**Stage 4: Data collection, access to experience.** One-on-one interviews were conducted either online or in the child and adolescent psychiatric department at the convenience of the parents and the main investigator of the study (MB). The latter had no contact with the parents before the study. Semi-structured interviews were conducted using an open-ended approach [32], guided by an interview framework built from the analysis of two pilot interviews and insights from preparatory meetings between the researchers and the CAPs. The interview guide included six open-ended questions: *Can you tell me how your first concerns or doubts about your child's difficulties began? Can you tell me in more detail how the search for information online went? How do you rate the quality of the websites you visited? How do you compare the information you find with the medical knowledge*

*provided? What effect has this research and information had on you? How do you continue to use the Internet for information?* These questions were selected as areas to explore because during the pilot interviews they provided rich and spontaneous narratives related to the aim of our study. However, the interviewer used an interactive conversational style [33] and within the IPSE approach, this interview guide should be seen– and serves only– as a narrative support to help the participants to recount their experience as they wish and see fit. In practice, the interviewer used phenomenological and experiential prompts to explore in each area the lived experience of participants and obtain a rich narrative of experience.

The interviews lasted 35–50 min. They were audio-
recorded and transcribed into anonymized transcripts,
including the participants' expressive nuances.

**Stage 5: Data analysis.** The IPSE analytic process is a rigorous procedure that relies on an inductive, phenomenological method. In practice, the analysis had two stages: one stage of independent work by MB, JS, and BL, aided by Nvivo software [34], and the other by all researchers pooling the data collectively. In the individual procedure, MB, JS, and BL independently and simultaneously conducted a systematic descriptive analysis to convey each participant's experience. This involved for each interview: [1] listening to the recorded interview twice and reading the transcript three times; [2] exploring the experience word by word, that is, cutting up the entire text into descriptive units; [3] regrouping the descriptive units into categories. During the group process, the three researchers met regularly with the rest of the research team, who had familiarized themselves with the data– by listening and reading all the interviews as many times as needed– to discuss and refine the analysis. These two-hour meetings, dedicated to reviewing and structuring the emerging findings, began after the analysis of five interviews. During these meetings, the researchers first conducted the structuring phase, that is, to regroup the categories into axes of experience, constructed such that each could be linked to its subjacent categories, and to determine the structure of lived experience characterized by the central axes. They then conducted the practical phase, the process of triangulating the data with what is known in the comprehensive literature on the topic, making it possible to identify the novel contributions and unique findings of the results.

Rigor criteria

To ensure the rigor of our analysis and the trustworthi-
ness of our results, we applied several established qualita-
tive research criteria: triangulation, attention to negative
cases, and reflexivity.

The concept of triangulation refers here to triangulat-
ing data sources, that is, the use of multiple data sources
<table><caption>**Table 1** Characteristics of participating families and fathers</caption><thead><tr><th>Parents</th><th>Sex of the child concerned</th><th>Diagnosis</th><th>Nb of children parental couple</th><th>Rank of siblings of child concerned</th><th>Member of the couple interviewed</th><th>Profession of the parent interviewed</th><th>Couple marital status</th></tr></thead><tbody><tr><td>M 1</td><td>B</td><td>ADHD + ODD</td><td>1</td><td>1</td><td>Mother</td><td>Human resources consultant</td><td>Separated or divorced</td></tr><tr><td>M 2</td><td>B</td><td>ADHD + ODD + Specific learning disorders</td><td>3</td><td>-</td><td>Mother</td><td>National Education</td><td>Couple</td></tr><tr><td>MF 3</td><td>B</td><td>ADHD</td><td>2</td><td>1</td><td>Couple</td><td>Father: computer scientist/Mother: housewife</td><td>Couple</td></tr><tr><td>M 4</td><td>B</td><td>ADHD</td><td>2</td><td>2</td><td>Mother</td><td>Actress</td><td>Separated or divorced</td></tr><tr><td>M 5</td><td>B</td><td>ADHD</td><td>3</td><td>2</td><td>Mother</td><td>Notary</td><td>Couple</td></tr><tr><td>M 6</td><td>G</td><td>ADHD</td><td>4</td><td>2</td><td>Mother</td><td>Childcare assistant</td><td>Separated or divorced</td></tr><tr><td>M 7</td><td>G</td><td>ADHD</td><td>2</td><td>1</td><td>Mother</td><td>Nurse</td><td>Couple</td></tr><tr><td>M 8</td><td>G</td><td>ADHD + ASD</td><td>2</td><td>2</td><td>Mother</td><td>Childcare assistant</td><td>Couple</td></tr><tr><td>M 9</td><td>G</td><td>ADHD</td><td>2</td><td>1</td><td>Mother</td><td>Communication</td><td>Couple</td></tr><tr><td>M 10</td><td>G</td><td>ADHD</td><td>2</td><td>1</td><td>Mother</td><td>Preschool Teaching Assistant</td><td>Couple</td></tr><tr><td>M 11</td><td>B</td><td>ADHD</td><td>2</td><td>2</td><td>Mother</td><td>Pharmaceutical assistant</td><td>Couple</td></tr><tr><td>M 12</td><td>B</td><td>ADHD + Developmental Coordination Disorder</td><td>2</td><td>1</td><td>Mother</td><td>Childminder</td><td>Couple</td></tr><tr><td>M 13</td><td>B</td><td>ADHD</td><td>2</td><td>2</td><td>Mother</td><td>Accountant</td><td>Couple</td></tr><tr><td>M 14</td><td>B</td><td>ADHD</td><td>2</td><td>1</td><td>Mother</td><td>Management assistant</td><td>Separated or divorced</td></tr><tr><td>M 15</td><td>B</td><td>ADHD + Specific learning disorders</td><td>2</td><td>1</td><td>Mother</td><td>Social worker</td><td>Couple</td></tr><tr><td>F 16</td><td>G</td><td>ADHD</td><td>4</td><td>2</td><td>Father</td><td>Paramedic</td><td>Separated or divorced</td></tr><tr><td>F 17</td><td>B</td><td>ADHD + Developmental Coordination</td><td>2</td><td>1</td><td>Father</td><td>Computer scientist</td><td>Couple</td></tr><tr><td>F 18</td><td>B</td><td>ADHD</td><td>2</td><td>2</td><td>Father</td><td>Retired</td><td>Couple</td></tr><tr><td>F 19</td><td>B</td><td>ADHD</td><td>2</td><td>2</td><td>Father</td><td>Actor</td><td>Separated or divorced</td></tr></tbody></table>

ADHD: Attention deficit hyperactivity disorder; ODD: oppositional defiant disorder; ASD: autism spectrum disorder; G: girl; B: boy

(parents' interview and comprehensive literature on the topic) and investigator triangulation. Three researchers were directly involved with data collection and individual analytical procedures, both being rigorous procedures to ensure a global understanding of the phenomenon under study [35]. Attention to negative cases involves systematically searching for data that challenge emerging results. In this study, particular attention was paid to the cases in which new elements differed radically from the emerging structure of the experience. These negative, sometimes contradictory, cases were integrated into the results.

Reflexivity is the process of researchers critically examining their own influence on the research process, including how their positionality, assumptions, emotions, and interactions with participants shape the findings [36]. In our study, reflexivity was a continuous effort, individually through personal notes and within the group through open discussions during regular meetings in which researchers reflected on their role and the potential impact of their perspectives on the results.

These practices were systematically integrated into our group process, fostering transparency and ensuring that our findings were as robust and nuanced as possible.

## Results

Twenty-three parents were approached and 20 parents (1 couple, 14 mothers, 4 fathers) were included in the study (Table 1). Among the first 15 parents interviewed, only one father was interviewed along with his wife. Four parents were initially interested in participating but then did not go through without giving any specific reason other than lack of availability.

Data analysis produced a common structure of lived experience based on three axes of experience of [1] Internet and the care pathway; [2] Internet knowledge and its supporting role; and [3] Internet and discordant discourse on ADHD between health professionals. Transcript excerpts presented below have been selected to exemplify the themes described and translated into English for the sole purpose of this article.

Other relevant quotations from the interview transcripts, translated from French to English specifically for this article, are presented in supplementary material (Table S1).
## Internet and the care pathway

### The first steps: symptoms as keywords and websites

Parents described looking online for symptoms similar to those exhibited by their child as one of the first steps in online research. They all mentioned an experience of floundering by entering symptom keywords in the search bar, the most common being “child’s anger”, “hyperactive child”, “hyperactivity”, “child’s lack of concentration” and “young child’s agitation”. It was through the lens of these keywords that they then reached and consulted websites related to ADHD, their first informal confrontation with the diagnosis.

> I did my research when I had doubts, in fact, I immediately went on the Internet to see the exact symptoms etc. and well, I recognized my son. (M11)

Most of the parents shared the experience of consulting the same websites:

* Websites of patient and parent organizations, such as “Hyper Supers TDAH France”, allow identification of the symptoms described and a first overview of the care pathway.

> I immediately joined the ADHD France group on Facebook, and right away, you understand better, (...) We are informed, helped, guided, that’s it. In this group, more than on Google, we are guided well, well-informed, we know what to do and where to go. (M2)

* Official websites, such as the one of the Regional Health Agency that parents came across quite early during their searches, were described as enlightening and informative.

* Other unofficial online resources, most of which they no longer remember.

### Recognizing the diagnosis without guidance on treatment

Identifying symptoms online was an important first step for parents. They felt encouraged to continue their research they felt encouraged to continue their research due to their interactions with other parents who were experiencing similar situations with their child.

Many parents considered that their online search significantly contributed to a medical validation of their child's difficulties, making it possible to transform external perspectives into a form of support (recognition, care, school accommodations).

> That was the turning point, in fact the diagnosis, that’s the turning point. That means you’re in the right hands, people who know what you’re going

> through and who will really be able to help you. (M4)

However, parents experienced a lack of signposted care routes online. They also conveyed frustration and distress regarding the absence of clear guidance on diagnostic and care pathways, relying on those around them or those responsible for their child (teachers, speech therapists, pediatricians) to access this information.

The fathers interviewed witnessed the mothers' struggles with this matter online but did not actively share the same experience.

> I let the mother manage, frankly the mother managed a lot, which she blamed me a little for not having participated enough. (F18)

## Internet, knowledge and the supporting role

### Share and help each other

All the mothers spoke about the major supporting role they found online through social networks and other online fora. They described that when they could not find answers to their questions, social media offered real help and guidance. Some used social networks or fora to learn about ADHD.

The mothers experienced guidance and clarification of the information previously collected through social media. They felt they could escape from wandering, uncertainty, and doubts thanks to these virtual support networks between parents.

> Then I go on fora, I listen, I read what other parents are saying, and I compare it to my son's condition. So, the fora, it's real-life experiences, you know it's people who have been through it. I spent hours, really, hours reading all of that, and what helped me the most were the fora. (M11)

Parents notably used Facebook groups for parents of children with ADHD such as “TDAH France HyperSupers”, “ADHD TypiK’AtypiK”. They shared their information and experiences through questions and answers to the community. These search strategies were seen as “more horizontal”, giving parents precise and almost immediate answers to their questions.

Mothers also explained that social networks brought together testimonies that compare experiences that can reassure and guide. They felt relieved to be finally heard and understood by other parents and highlighted the practical information and daily parental guidance via advice from other parents on these networks.

> But it's true that when moms share their daily experiences and give their little tips, like game ideas or
using certain resources, you think, 'Okay, I'll try this kind of thing, and maybe it'll work, or maybe not, we'll see.' So, these little tips make you think, 'Well, she has a similar daily life to mine, so maybe it'll work for us too. (M10)

### Seeking practical and official ADHD information online

On this matter, again, fathers shared different perspectives. They expressed a preference for official sources, such as medical websites, and reported being cautious about the emotional intensity of parent testimonies or even avoiding parent discussiongroups.

> The first research you do is to understand the overall ADHD system, to know what it is exactly, what is happening in your child's brain (...) And then you are also confronted at certain times with testimonies which can increase your anxiety by saying to yourself we are never going to get out of this, but you have seen this thing it is even worse. But for me to read even worse things doesn't reassure me, it really worries me (...) For me the main danger of the Internet is people's judgments and the torrent of emotions and anguish when the sites are only receptacles of anguish, distress, and despair. I can't do it, it's too violent, it's too difficult. (F19)

This axis revealed notable differences and similarities in how fathers and mothers experienced and navigated their child's ADHD diagnosis and care.

*   **Emotional impact and role in the care pathway:** Mothers, driven by guilt, loneliness, and external judgment, took an active role in their child's care, while fathers remained more distant, often relying on their partners, which sometimes led to tension.

*   **Use of online resources:** Mothers predominantly used social networks and fora to seek emotional support and practical advice from other parents in similar situations while fathers preferred official and scientific sources for accurate and factual information about ADHD.

*   **Perception of professional guidance:** Mothers aligned their expectations with the advice and guidance found online, sometimes leading to frustration when healthcare professionals failed to meet these expectations. Fathers adopted a more critical stance, focusing on the gaps between professional opinions and the information found online.

*   **Coping strategies:** Mothers often used online resources as a way to cope emotionally with the challenges of parenting a child with ADHD, finding reassurance and validation in shared experiences. Fathers, while less involved in emotional exchanges,

focused on understanding the condition scientifically to support their children practically.

### Internet and discordant discourse on ADHD between health professionals

#### Contradictory discourses on ADHD

Several parents reported encountering a significant gap between the information available online and the explanations provided by healthcare professionals. Many experienced frustration when their concerns, reinforced by their online searches, were dismissed by professionals.

> And here we are confronted with a double discourse. That is to say the discourse of neuropsychiatrists and the discourse of psychotherapists with a psychoanalytic tendency. And who therefore absolutely do not have the same vision of ADHD. (M15)

Some parents felt lost, struggling to navigate conflicting messages and choose between different interpretations of ADHD.

> But it's true that there was a bit of wandering, you know... you feel like you're left on your own, going from one professional to another without really knowing, without receiving any guidance. (M9)

Others fully aligned with the perspectives shared within their online communities, reinforcing a sense of belonging but sometimes leading to tensions with healthcare professionals over what constitutes legitimate knowledge.

At the same time, some parents chose to step back from online communities, feeling the need to regain critical thinking and form their own perspective.

#### Mismatched expectations and uncertainty

Parents recounted the significant contrast between what they expected from professionals—expectations built from their online interactions with social networks— and what really happened.

Parents expressed feeling emotionally drained by repeated consultations that did not yield the same conclusion and solutions they found online.

> All this to say that after everything, I felt like it wasn't leading anywhere, there wasn't really a diagnosis for my son, so I put things on hold for a few months because I was just tired, really—I was trying to do what I could. (M5)

### Discussion

Our findings highlight how parents' online searches for information about ADHD are deeply intertwined with their lived experiences of the diagnostic and care
pathway. The results reveal not only the pivotal role of digital resources in shaping their understanding and decision-making but also the emotional and practical challenges they face when navigating conflicting information and professional guidance.

A recent literature review about the mental health knowledge of Internet users highlighted that digital interventions (ranging from parental education modules to consultation of popular health information sites) significantly improved parents' knowledge scores about ADHD [37]. Another study highlights the importance of online searches for parents of children with ADHD. However, our study provides additional insights by showing how these searches influence not only their understanding of the disorder but also their relationship with health-care professionals and their care pathway. This difference underscores the importance of considering how parents interpret and integrate information into their decisions, which can have a direct impact on the guidance and effectiveness of medical follow-up.

Our study highlights the supporting role of online social networks and discussion fora, with parents particularly emphasizing the abundance of practical information available on social networks compared to more official sites on ADHD. In addition, receiving advice from other parents in a similar situation was more accepted and more impactful. It has been shown that Facebook remains the preferred social network for parents looking for information on their children's health [38]. Parents in our study clearly remembered the support groups they joined but struggled to recall non-social network websites, highlighting differences in the efficiency and experience of online searches. Social networks attract intense movements of sharing/claiming and belonging/non-belonging, the question of identity and affiliation within a group of parents of ADHD children becomes central [39].

Our results suggest an intertwining of the search of information and the affiliation through these networks with a community of “parent-peers”, since such affiliation comes with a discourse that informs, guides, supports and advises. In other words, these communities establish a clear discourse on ADHD from which it can be difficult for some members to detach themselves. Some parents described what we call a *belonging and identity trap* [40], referring to a situation where a person feels trapped by their group identity or by the expectations and norms associated with belonging to a particular group.

Our findings highlight how online communities serve as crucial spaces for parents of children with ADHD, providing support, guidance, and a sense of belonging. This aligns with previous research showing that digital communities help alleviate parental guilt and reinforce the neurodevelopmental perspective of ADHD, encouraging

parents to take a proactive role in their child's diagnosis and care [38, 39, 41].

In 2019, a French study found that the discourses from online communities of parents with ADHD were articulated around the alleviation of guilt from families, the neurodevelopmental origin of ADHD, and recommendations to establish a diagnosis, thus encouraging parents to play a proactive role in the care of their child [41]. Digital communities thus give worried parents a place of mutual assistance in a context of distrust of current professional practices [41]. Furthermore, our study supports findings that online platforms contribute to polarized discussions on ADHD treatments, particularly psychostimulants. This is particularly problematic in France since there is a lack of consensus regarding how to consider and approach ADHD not only in the lay public but also among French mental health professionals themselves [42]. A recent study in two French regions confirmed the heterogeneity of ADHD-related knowledge among general practitioners, pediatricians, and CAPs, further complicating parental decision-making [43].

Our findings highlight clear gender differences in the use and expectations of online resources among parents of children with ADHD. Fathers in our study tended to perceive social networks as too emotionally charged and subjective, preferring instead the structured, evidence-based content of academic and official websites. On the other hand, mothers predominantly turned to social networks and fora to share experiences, find practical advice, and build a sense of community, which provided emotional reassurance and guidance in navigating the diagnostic and care process. This is consistent with studies indicating that mothers are more engaged in emotional and social aspects of caregiving and often seek peer support when managing their child's health challenges [38, 39]. Our results therefore suggest distinct patterns that would need to be assessed and investigated in a further quantitative study. These patterns could highlight the importance of tailoring interventions and resources to accommodate the differing needs and roles of both parents. Specifically, targeted support could empower mothers by alleviating emotional burdens and fostering effective coping strategies, while also encouraging fathers to engage more holistically by addressing their preference for evidence-based resources and practical involvement. Understanding these dynamics is crucial for developing family-centered interventions that enhance collaboration between parents and ultimately improve outcomes for children with ADHD.

Online content about ADHD serves as a key reference point for parents as they navigate the different perspectives and medical approaches encountered when consulting specialists. The variety of available information can sometimes lead to confusion, as parents feel compelled
to choose between differing explanations and treatment options. This uncertainty is often addressed through exchanges with other parents on social networks, where they seek reassurance, compare experiences, and refine their understanding of ADHD. As highlighted by the study on "Mumsnet" [44], a widely used parenting discussion forum in the United Kingdom, parents actively engage in discussions to validate information, clarify conflicting advice from professionals, and find emotional support. These online interactions help shape their expectations and influence how they interpret and respond to professional guidance [44].

## Strengths and limitations of the study

This is the first French study focusing on the lived experience of online search and activities of parents of ADHD children. The IPSE approach provided a rigorous framework for capturing parents' lived experiences through iterative analysis and researcher triangulation. However, some limitations must be acknowledged. The sample included only heteronormative and cisgender parents with an overrepresentation of mothers, reflecting real-world caregiving patterns but potentially limiting the diversity of perspectives. Future research should aim for a more diverse and balanced representation. An Australian study looked closely at fathers of children aged 0 to 8 years old and in need of mental health care. This identified various obstacles to fathers seeking help such as the need for control and autonomy in managing problems, a tendency to minimize their struggles, and a feeling of resignation to the idea that nothing will help [45]. This greater passivity of fathers calls into question the mental burden placed on mothers. On a sociological level, this brings a gendered perspective to the interpretation of behaviour. However, mothers and fathers in our study shared an overall common structure of lived experience but with different perspectives, especially about social networks and forum discussions. Indeed, our results suggest key differences between fathers and mothers that we chose to highlight, these results provide relevant insights on how gendered roles and perceptions influence parental engagement and coping mechanisms. However, this qualitative study, with a small sample size and no measurable variables, does not allow for a comparative analysis.

Data collection through semi-structured interviews allowed for in-depth exploration but may have introduced self-selection bias, favoring participants with stronger engagement in online communities. Furthermore, the absence of observational data limits the ability to contextualize online behaviors fully. While the study's methodological rigor enhances its validity, future research should further diversify participants and adopt mixed-methods approaches to deepen the understanding of parental experiences with online information-seeking.

This qualitative study has some limitations that might hinder its transferability. First, even if online search and activities are now part of daily lives in most countries, it took place in France, and caution is required in transposing our findings to other places because, as discussed above, findings are embedded in the French sociocultural context, in general, and within the French system of child and adolescent psychiatry, in particular. In France, ADHD treatment is embedded in a debate marked by two main theoretical approaches: the neurodevelopmental and psychodynamic currents that not only influence clinical practices but also shape the perception of ADHD in French society. Further research should explore the same research question with parents from other countries.

Second, our specific focus on ADHD raises the question of whether parent's expectations and patterns of Internet use are comparable across other psychiatric and non-psychiatric conditions. Studying these dynamics in different contexts would help to determine how specific they are to ADHD or if they are part of a broader pattern. Although the number of participants [20] allowed for the collection of rich and diverse data, consistent with the objective of a qualitative study, we acknowledge that the sample size limits the generalizability of the findings to other populations, which should be considered when interpreting findings.

Finally, our study was conducted in a single-center, a university child and adolescent psychiatric department. It would be interesting to conduct a study with a similar design in other settings such as outpatient centers of child and adolescent mental health services and private practices.

## Conclusion

The growing mobilization of families via associative organizations or parent groups contributes to a more active role for parents in help-seeking and managing their children's conditions. Through their shared experiences and the insights gained from networks, parents further enhance their role as valuable contributors to the information provided to doctors. By highlighting these experiences, this study provides a deeper understanding of how parents navigate online information, reflecting their needs for clear, evidence-based guidance and supportive online spaces.

## Abbreviations

ADHD Attention deficit hyperactivity disorder

ASD Autism spectrum disorder

CAPS Child and adolescent psychiatrists

COREQ Consolidated criteria for reporting qualitative research

IPSE Inductive process to analyze the structure of lived experience

ODD Oppositional defiant disorder
**Supplementary Information**

The online version contains supplementary material available at https://doi.org/10.1186/s13034-025-00886-5.

Supplementary material 1

**Acknowledgements**

We sincerely thank Dr. Marilyn N. Ahun for her invaluable contribution in reviewing and proofreading our manuscript. Her insightful corrections and comments have significantly improved the clarity and quality of the text. We deeply appreciate her time and expertise.

**Author contributions**

Conceptualization and Study Design: MB, SB, BL, JS; Data Collection and Analysis: MB, SB, AM, BL, JS; Manuscript Writing and Editing: MB, SB, AM, ARL, DPO, EA, BL, JS, RD; Supervision and Oversight: RD, BL, JS.

**Funding**

None.
Availability of data and materials: Available on reasonable request.

**Data availability**

No datasets were generated or analysed during the current study.

**Declarations**

**Competing interests**

The authors declare no competing interests.

**Ethical approval**

This study was reviewed and approved by the Research Ethics Committee CEER-RD (Comité d'Evaluation de l'Ethique des Projets de Recherche de Robert Debré) on 14th March 2022, under reference number 2022-597bis. The study complies with French ethical guidelines and the Declaration of Helsinki.

**Consent to participate**

All participants provided consent for publication of the findings. This study complies with the General Data Protection Regulation and the French Data Protection Act. A declaration of conformity to the MR-004 framework was made to the CNIL (Commission Nationale de l'Informatique et des Libertés).

**Informed consent**

Written informed consent was obtained from all participants, as required for observational studies under French law.

**Author details**

Received: 2 December 2024 / Accepted: 17 March 2025

Published online: 24 March 2025

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