<figure><img src="image_1.png" /></figure>

HAL
open science

# The diagnostic and therapeutic journey of Tourette syndrome: Thematic analysis of the difficulties experienced by parents of patients

Z. Breton, P. Denis, V. Goussé, A. Hartmann

► To cite this version:

Z. Breton, P. Denis, V. Goussé, A. Hartmann. The diagnostic and therapeutic journey of Tourette syndrome: Thematic analysis of the difficulties experienced by parents of patients. Revue Neurologique, In press, 10.1016/j.neurol.2025.03.011. hal-05069980

HAL Id: hal-05069980

https://hal.science/hal-05069980v1

Submitted on 16 May 2025

HAL is a multi-disciplinary open access
archive for the deposit and dissemination of sci-
entific research documents, whether they are pub-
lished or not. The documents may come from
teaching and research institutions in France or
abroad, or from public or private research centers.

L'archive ouverte pluridisciplinaire HAL, est
destinée au dépôt et à la diffusion de documents
scientifiques de niveau recherche, publiés ou non,
émanant des établissements d'enseignement et de
recherche français ou étrangers, des laboratoires
publics ou privés.

<figure><img src="image_2.png" /></figure>

Distributed under a Creative Commons Attribution 4.0 International License
Original article

# The diagnostic and therapeutic journey of Tourette syndrome: Thematic analysis of the difficulties experienced by parents of patients

Z. Breton<sup>a,b,1</sup>, P. Denis<sup>c,1</sup>, V. Goussé<sup>d</sup>, A. Hartmann<sup>e,*</sup>

## INFO ARTICLE

Article history:

Received 31 May 2024

Received in revised form

19 November 2024

Accepted 13 March 2025

Available online xxx

Keywords:

Thematic analysis

Diagnosis

Journey

Parents

Tourette syndrome

## ABSTRACT

**Objective.** – The aim of this thematic analysis is to formalize the parental trajectories of therapeutic wandering, from first symptoms to the diagnosis until disease management.

**Methods.** – An inductive and deductive thematic analysis was carried out based on 25 interviews with parents of children with TS. Statistical and association tests were also conducted.

**Results.** – From the interviews with parents, 284 codes were categorized into 19 inductive subthemes, which were then grouped into 5 deductive themes. Some of the subthemes were relevant to all interviewees, and ranged from the description of the disease characteristics, parental distress, the impact of the TS diagnosis, and the evaluation of the diagnostic journey.

**Conclusion.** – Our study sheds light on how the parents of children with TS experience the diagnostic and therapeutic journey. By highlighting recurrent themes experienced by families, we hope that the results will be beneficial to both parents and children with TS in avoiding future diagnostic and therapeutic delay.

© 2025 The Author(s). Published by Elsevier Masson SAS. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).

<footnote><sup>a</sup>Université Paris-Saclay, UVSQ, Inserm, Gustave Roussy, CESP, 94805 Villejuif, France</footnote>

<footnote><sup>b</sup>Lyu Healthcare, Nantes, France</footnote>

<footnote><sup>c</sup>Laboratoire Psychologie Sociale (EA 849), Université d'Aix Marseille, Marseille, France</footnote>

<footnote><sup>d</sup>Université de Nîmes, 30021 Nîmes, France</footnote>

<footnote><sup>e</sup>Centre de Référence National Maladie Rare: « Syndrome Gilles de la Tourette », Département de Neurologie, DMU Neurosciences, AP-HP, Sorbonne Universités, Groupe Hospitalier Pitié-Salpêtrière, 75651 Paris Cedex 13, France</footnote>

<footnote>* Corresponding author at: Groupe Hospitalier Pitié-Salpêtrière, Institut de Neurologie, 83, boulevard de l'Hôpital, 75651 Paris Cedex 13, France.</footnote>

<footnote>E-mail address: andreas.hartmann@aphp.fr (A. Hartmann).</footnote>

<footnote n="1">¹ Co-first authorship.</footnote>

<footnote>Abbreviations: AFSGT, Association Française du Syndrome de Gilles de la Tourette (French Patient Association for Tourette Syndrome); MDPH, Maison Départementale des Personnes Handicapées (French Departmental House for the Disabled); OCD, obsessive-compulsive disorder; TS, Tourette syndrome.</footnote>

<footnote>https://doi.org/10.1016/j.neurol.2025.03.011</footnote>

<footnote>0035-3787/© 2025 The Author(s). Published by Elsevier Masson SAS. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).</footnote>
# 1. Introduction

Tourette syndrome (TS) is a neurodevelopmental disorder characterized by the presence of motor and phonic tics [1,2], and is frequently associated with psychiatric comorbidities [3]. Tics can be differentiated from other hyperkinetic movement disorders by the possibility of their temporary voluntary suppression. They are also often anticipated by premonitory sensations or ‘urge to do’, relieved by performance of the tic [4,5]. The prevalence is estimated at 0.5 to 1% of school-aged children [3,6,7]. Tic severity then declines significantly in adulthood in around two-thirds of cases.

It is essential to properly explain the diagnosis to the child and its family in order to reduce distress (psychoeducation). If tics are bothersome, behavior therapy for tics is usually the recommended first-line intervention [8]. Alternatively, pharmacological treatments can be proposed in cases where tics are bothersome [9].

Despite progress being made, TS is a disorder that still seems to be poorly understood and diagnosed by healthcare professionals in France. This is partly due to the heterogeneity of symptoms and severity, but also due to a lack of knowledge and training in the elements needed to make a TS diagnosis. In a Danish study, this resulted in a significant diagnostic delay, averaging at 5 years, as well as a long period of therapeutic wandering before obtaining adequate treatment [10]. The therapeutic journey surrounding the disorder has a profound impact on the quality of life of the patient and their family [3]. However, studies investigating this journey and the experiences of patients and their families seem to be lacking, with only two studies having attempted to describe them to date [11,12].

Based on the parents' narratives, the objective of this analysis was to formalize the parental trajectories of therapeutic wandering, from onset of the initial symptoms to diagnosis until the disease management. To this end, a thematic analysis using an inductive and deductive classification was used to synthetically represent the themes discussed during interviews with parents of children with TS. Ultimately, this study aims to improve the dissemination of knowledge about TS and thus reduce diagnostic and therapeutic delays.

# 2. Methods

The components of the diagnostic and therapeutic trajectory of parents of children with TS have been categorized into five axes based on deductive hypotheses. First, there is a temporal axis, chronologically retracing life events from the first questions and initial symptoms to symptoms evolution, diagnosed comorbidities, and difficulties caused by symptoms until the TS diagnosis. Next, there is an institutional axis, which includes the role of the various players in the social, health and educational fields and the definition of the symptoms and their initial interpretation. A third axis is representational, revealing the role of social representations and beliefs in the categorization of symptoms and in the definition and delimitation of therapeutic and diagnostic

options. Added to these is an emotional and relational axis, which underscores the role that the emotional dimension (particularly the family) can play in the therapeutic encounter, the apprehension and organization of medical and social information, and in the relations with the key stakeholders of the medical institution. Finally, a structural axis describes how the organization of care and medical specialties is able to impact trajectories.

In total, 25 semi-structured interviews with parents of children with TS were conducted between 2017 and 2018, each lasting between one to four hours. These were supplemented by 6 interviews with children with TS aged between 12 and 18, whose parents were equally interviewed. The parents interviewed had received their child's diagnosis of TS at least one year prior to the interview. Participation in these interviews was on a voluntary basis; oral consent was given, and participants were guaranteed that their anonymity would be preserved before starting the recordings [13]. The interview grid was constructed around the five initial deductive hypotheses. Sociodemographic data, along with the circumstances surrounding the diagnosis, were also collected prior to the interviews. The parents interviewed were recruited by the AFSGT as well as by the French Reference Center for TS in Paris/France. All of the interviews were transcribed and pseudonymized by one of the study's authors (PD), resulting in a text corpus of more than 200 pages.

A thematic analysis was conducted on the basis of the 25 interviews of parents by a second study author (ZB), who had not participated in the interviews. Thematic analysis consists of synthetically representing the themes addressed in the corpus in order to analyze the content around an initial research question. An inductive and deductive classification was used [14,15]. The interviews were read one by one to code the topics discussed by the interviewees until thematic saturation was reached. They were then re-read to check for concordance with the final codes [16]. The codes were then grouped into inductive subthemes, and these themes were then grouped into deductive themes, based on the 5 initial hypotheses. Throughout the process, a number of codes and subthemes were modified, regrouped, divided or reformulated in consultation with the study's co-authors, and with the help of a TS patient and a patient's mother, both members of the AFSGT. This thematic analysis was conducted using Excel software.

It should be noted that the number of parents belonging to a code or subtheme does not correspond to an exhaustive number of parents who have experienced the code, but to the number of interviewees who mentioned the code during their interview.

Finally, for the six children's interviews available, the codes mentioned by the children were compared to those mentioned by their parents, in order to observe any possible divergences and complementarities in the accounts and experiences of their journey with TS.

Descriptive statistics were carried out (number, percentage, mean and standard deviation) to describe the codes, subthemes, themes and sociodemographic variables. Statistical tests (chi-squared and Fisher's exact test) were used to observe significant associations at the 95% level between belonging to a subtheme and sociodemographic variables.
Pearson correlation coefficients were calculated to reveal any correlations between these same two groups of variables. These tests were carried out using SAS 9.4 programming software.

# 3. Results

## 3.1. Study population

The interviews of the 25 parents and 6 of children with TS were analyzed in this study. The sociodemographic data of the parents are presented in Table 1. The parents interviewed in our study were on average 47 years old at the moment of the interview, and the vast majority were women (88%). The majority were in a relationship (68%) with education levels ranging from the equivalent of a high school diploma to three years of post-secondary education (60%).

## 3.2. Diagnostic odyssey

Most of the children experienced their first symptoms of TS during pre-school/kindergarten (40%) or primary school (36%),

<table><caption>Table 1 – Characteristics of the parents of children with TS interviewed.</caption><thead><tr><th></th><th>n</th><th>%</th></tr></thead><tbody><tr><td>Sex of parent</td><td></td><td></td></tr><tr><td>Mother</td><td>22</td><td>88%</td></tr><tr><td>Father</td><td>3</td><td>12%</td></tr><tr><td>Age of the parent at time of interview</td><td></td><td></td></tr><tr><td>40-44 years</td><td>10</td><td>40%</td></tr><tr><td>45-49 years</td><td>8</td><td>32%</td></tr><tr><td>50-59 years</td><td>6</td><td>24%</td></tr><tr><td>&gt; 60 years</td><td>1</td><td>4%</td></tr><tr><td>Mean</td><td>47 years (±5.4)</td><td></td></tr><tr><td>Marital status of the parent</td><td></td><td></td></tr><tr><td>Single (including divorced)</td><td>8</td><td>32%</td></tr><tr><td>In a relationship/married</td><td>17</td><td>68%</td></tr><tr><td>Education level of the parent</td><td></td><td></td></tr><tr><td>&lt; High school diploma</td><td>3</td><td>12%</td></tr><tr><td>Between high school diploma and 3 years post-secondary education</td><td>15</td><td>60%</td></tr><tr><td>&gt; 3 years post secondary education</td><td>7</td><td>28%</td></tr><tr><td>Child's age at onset of first symptoms</td><td></td><td></td></tr><tr><td>0-2 years</td><td>4</td><td>16%</td></tr><tr><td>Pre-school/kindergarten (3-5 ans)</td><td>10</td><td>40%</td></tr><tr><td>Primary (6-10 years)</td><td>9</td><td>36%</td></tr><tr><td>Middle school or higher (&gt; 11 ans)</td><td>1</td><td>4%</td></tr><tr><td>Information not available</td><td>1</td><td>4%</td></tr><tr><td>First symptoms</td><td></td><td></td></tr><tr><td>Motor tics</td><td>14</td><td>56%</td></tr><tr><td>phonic tics</td><td>7</td><td>28%</td></tr><tr><td>Hyperactivity</td><td>1</td><td>4%</td></tr><tr><td>Concentration problems</td><td>1</td><td>4%</td></tr><tr><td>Anxiety disorders</td><td>1</td><td>4%</td></tr><tr><td>Information not available</td><td>1</td><td>4%</td></tr><tr><td>Child's age when diagnosed with TS</td><td></td><td></td></tr><tr><td>0-2 years</td><td>0</td><td>0%</td></tr><tr><td>Preschool/kindergarten (3-5 ans)</td><td>0</td><td>0%</td></tr><tr><td>Primary school (6-10 ans)</td><td>9</td><td>36%</td></tr><tr><td>Middle school (11-14 ans)</td><td>12</td><td>48%</td></tr><tr><td>High school(15-17 ans)</td><td>2</td><td>8%</td></tr><tr><td>&gt; 18 ans</td><td>2</td><td>8%</td></tr></tbody></table>

<table><caption>Table 1 (Continued)</caption><thead><tr><th></th><th>n</th><th>%</th></tr></thead><tbody><tr><td>Child's age at time of interview</td><td></td><td></td></tr><tr><td>Middle school (11-14 ans)</td><td>11</td><td>44%</td></tr><tr><td>High school (15-17 ans)</td><td>9</td><td>36%</td></tr><tr><td>&gt; 18 ans</td><td>5</td><td>20%</td></tr><tr><td>Time since diagnosis</td><td></td><td></td></tr><tr><td>1 year</td><td>7</td><td>28%</td></tr><tr><td>2 years</td><td>6</td><td>24%</td></tr><tr><td>3-4 years</td><td>4</td><td>16%</td></tr><tr><td>5 or more years</td><td>7</td><td>28%</td></tr><tr><td>Unknown</td><td>1</td><td>4%</td></tr><tr><td>Place of diagnosis</td><td></td><td></td></tr><tr><td>Salpétrière Hospital in Paris</td><td>18</td><td>72%</td></tr><tr><td>Pediatrician in private practice</td><td>3</td><td>12%</td></tr><tr><td>Hospital outside of the Île-de-France region</td><td>4</td><td>16%</td></tr><tr><td>Number of different types of healthcare professionals consulted prior to diagnosis</td><td></td><td></td></tr><tr><td>1</td><td>3</td><td>12%</td></tr><tr><td>2</td><td>3</td><td>12%</td></tr><tr><td>3</td><td>3</td><td>12%</td></tr><tr><td>4</td><td>5</td><td>20%</td></tr><tr><td>5</td><td>4</td><td>16%</td></tr><tr><td>6</td><td>4</td><td>16%</td></tr><tr><td>7</td><td>2</td><td>8%</td></tr><tr><td>8</td><td>0</td><td>0%</td></tr><tr><td>9</td><td>1</td><td>4%</td></tr><tr><td>Mean</td><td>4.2 (±2.1)</td><td></td></tr><tr><td>Types of healthcare professionals consulted prior to diagnosis (sum does not equal 100%, as a patient may be included in more than one category)</td><td></td><td></td></tr><tr><td>Psychologist</td><td>13</td><td>52%</td></tr><tr><td>General practitioner<sup>a</sup></td><td>10</td><td>40%</td></tr><tr><td>Pediatrician</td><td>9</td><td>36%</td></tr><tr><td>Neurologist<sup>a</sup></td><td>8</td><td>32%</td></tr><tr><td>Child psychiatrist<sup>a</sup></td><td>8</td><td>32%</td></tr><tr><td>Psychomotor therapist</td><td>6</td><td>24%</td></tr><tr><td>Homeopath<sup>a</sup></td><td>5</td><td>20%</td></tr><tr><td>Psychiatrist<sup>a</sup></td><td>5</td><td>20%</td></tr><tr><td>Hypnotherapist</td><td>4</td><td>16%</td></tr><tr><td>Psychotherapist</td><td>4</td><td>16%</td></tr><tr><td>Emergency department/day hospital</td><td>4</td><td>16%</td></tr><tr><td>Allergist<sup>a</sup></td><td>3</td><td>12%</td></tr><tr><td>ENT<sup>a</sup></td><td>3</td><td>12%</td></tr><tr><td>Speech therapist</td><td>3</td><td>12%</td></tr><tr><td>Naturopath</td><td>2</td><td>8%</td></tr><tr><td>Neuropsychologist</td><td>2</td><td>8%</td></tr><tr><td>Ophthalmologist<sup>a</sup></td><td>2</td><td>8%</td></tr><tr><td>Sophrologist</td><td>2</td><td>8%</td></tr><tr><td>Chiropractor</td><td>1</td><td>4%</td></tr><tr><td>Graphomotor specialist</td><td>1</td><td>4%</td></tr><tr><td>Kinesiologist</td><td>1</td><td>4%</td></tr><tr><td>Physiotherapist</td><td>1</td><td>4%</td></tr><tr><td>Sleep specialist</td><td>1</td><td>4%</td></tr><tr><td>Sports medicine specialist</td><td>1</td><td>4%</td></tr><tr><td>Child neurologist<sup>a</sup></td><td>1</td><td>4%</td></tr><tr><td>Neuropsychiatrist</td><td>1</td><td>4%</td></tr><tr><td>Osteopath</td><td>1</td><td>4%</td></tr><tr><td>Pulmonologists<sup>a</sup></td><td>1</td><td>4%</td></tr><tr><td>Podiatrist</td><td>1</td><td>4%</td></tr><tr><td>Numbers, percentages, means and standard deviations of the sociodemographic characteristics of parents of children with TS interviewed.</td><td></td><td></td></tr><tr><td><sup>a</sup> Healthcare professionals potentially consulted for symptoms of TS.</td><td></td><td></td></tr></tbody></table>
with the main manifestations being motor tics (56%) or phonic tics (28%). They were diagnosed later, i.e., in primary school (36%) or in middle school (48%). At the moment of the interview, the diagnosis of TS had been made anywhere from one to more than 5 years ago. The vast majority of diagnoses were made at the Pitié-Salpêtrière Hospital in Paris, France (72%). A long journey to reach the diagnosis is described, with an average of 4 different types of healthcare professionals consulted prior to diagnosis—most often these being psychologists, general practitioners, pediatricians, neurologists and child psychiatrists.

### 3.3. Thematic analysis

From the interviews with the parents, 284 codes were categorized into 19 inductive subthemes, which were then grouped into 5 deductive themes. In parallel, 49 codes were described from the interviews with the 6 children. These codes were not included in the thematic analysis. The 5 deductive themes, based on our initial hypotheses, and the categorization of the 19 inductive subthemes are shown in Fig. 1.

#### 3.3.1. Temporal axis

The first theme concerned the temporal axis. Three subthemes were grouped under this main theme, allowing for life events with TS to be traced, ranging from the characteristics of the syndrome to comorbidities and including the difficulties caused by the symptoms. The codes contained within the subthemes of the temporal axis are represented in Fig. 2a, along with the number of parents who mentioned these codes during their interviews.

TS is expressed in almost all children of interviewed parents by two symptoms: motor tics and phonic tics. One of the common characteristics is the evolution of tics and OCD over time. The control of tics at school and their release once at home is a characteristic feature of TS, mentioned by many parents. Finally, the presence of coprolalia was mentioned by 8 of the 25 parents interviewed.

Rage attacks or violent outbursts are frequently mentioned by the interviewees, and are one of the triggering factors for parents to seek help. The presence of OCD is the second most frequently mentioned sign by parents, followed by hyperactivity or attention deficit hyperactivity disorder (ADHD).

The many difficulties caused by TS symptoms attest to the syndrome's undeniable impact on the quality of life of patients

and their loved ones. Tics are energy-draining and exhaust children, leading to poor concentration and fatigue, and for many they can also impact sleep. Tics also generate difficulties that have a significant impact on their school life, such as difficulties in taking notes, writing, pronunciation or completing homework. Finally, managing TS symptoms has an impact on the child's mental health, often causing anxiety.

#### 3.3.2. The institutional axis

Three subthemes were grouped within the institutional axis theme. In those we find the impact of TS on school as well as social life, and also the difficulties encountered by the interviewees with finding administrative and educational support throughout their journey. Lastly, the parents also mentioned a number of aids and assistance that they had come across during their journey, which had enabled them to obtain better support and care for their child (Fig. 2b).

A number of parents report good academic results and social integration despite TS. However, many children are teased in primary or middle school, despite the fact that TS is sometimes explained to the class following its diagnosis. Some children are even subjected to physical violence. As a result, many affected children reported social withdrawal, a fear of others or a refusal to attend school. The parents mentioned qualities of their children, such as tenacity or courage, in dealing with all these challenges.

When it comes to parents' difficulties in the management of administrative and educational support, school comes up the most often with the failure of certain teachers to listen or understand, despite being given explanations of the disorder. Several parents even mentioned situations where the teachers themselves had teased their child.

Nonetheless, the interviewees mentioned a number of elements that had helped them during their journey with TS. Frequently, certain teachers were attentive to the symptoms and the diagnosis, which facilitated the child's academic life. The patient organization AFSGT was equally mentioned by several parents as having helped them along their journey towards diagnosis and post-diagnosis. School support and accommodations had sometimes been put in place, such as the provision of a teaching assistant (AVS – Auxiliaire de Vie Scolaire – or AESH – Accompagnants d'Elèves en Situation de Handicap – in France) the implementation of an individual care plan or providing extra time to complete tasks or exams. For some parents, institutions such as the French Departmental

<figure><img src="image_3.png" /><figcaption>Fig. 1 – Themes and subthemes derived from thematic analysis. The study topic gave rise to 5 themes, each of which includes subthemes.</figcaption></figure>
<figure><img src="image_4.png" /></figure>

<figure><img src="image_5.png" /><figcaption>Fig. 2 – Codes and subthemes of the axis theme. a. Codes and subthemes included in the “temporal” axis theme. The “temporal” axis theme contains subthemes in which codes are included, followed by the number of parents who mentioned these codes in their interviews. b. Codes and subthemes included in the “institutional” axis theme. The “institutional” axis theme contains subthemes in which codes are included, followed by the number of parents who mentioned these codes in their interviews. c. Codes and subthemes included in the “representational” axis theme. The “representational” axis theme contains subthemes in which codes are included, followed by the number of parents who mentioned these codes in their interviews. d. Codes and subthemes included in the “emotional and relational” axis theme. The “emotional and relational” axis theme contains subthemes in which codes are included, followed by the number of parents who mentioned these codes in their interviews. e. Codes and subthemes included in the “structural” axis theme. The “structural” axis theme contains subthemes in which codes are included, followed by the number of parents who mentioned these codes in their interviews.</figcaption></figure>
<figure><img src="image_6.png" /><figcaption>Fig. 2. (Continued).</figcaption></figure>

House for the Disabled (MDPH) or the French special education network (RASED) were mentioned among the support received. A number of healthcare professionals also provided positive support along the path towards management and

care. Making the diagnosis helps to readjust practices, both for parents and teachers, with whom it often becomes easier to communicate about the difficulties encountered. However, a lack of awareness about TS still makes accessing accommodation
e

<figure><img src="image_7.png" /><figcaption>Fig. 2. (Continued).</figcaption></figure>

dations difficult for some students who, despite having received a diagnosis, are still perceived as disruptive by their teachers or their peers.

### 3.3.3. Representational axis

Social representations and beliefs were extensively discussed in the interviews. They were categorized into 3 subthemes, ranging from representations and preconceived ideas about TS, to suspicions and orientation towards diagnosis, and finally to the topic of acceptance of the diagnosis and its symptoms (Fig. 2c).

The topic of representations and preconceived ideas about TS primarily focuses on coprolalia. For a start, the parents mention that they themselves had a vision of TS as being defined by the presence of coprolalia prior to their child's diagnosis. The idea that coprolalia would become a primary symptom with age was a major fear for the parents. They condemn the media's misrepresentation of TS, but also criticize the fact that this misrepresentation is equally present in the discourse of certain physicians.

"It so happens that my eldest daughter went on the Internet and said to me « Mom, I think I know what Christophe has», she added: « I think that it's Tourette syndrome ». I replied: « That's nonsense ». The image I had was one of children who said swear words and only that. I didn't have the slightest idea that there could be motor tics. For me, it did not correspond at all.” (Parent #20).

Very often, the increase in symptoms is what pushes parents to seek a consultation with a specialist. It is not uncommon for the first information about TS to be found on the Internet, helping to confirm suspicions or find contacts to

obtain a diagnosis. Finally, there is a certain amount of luck involved, with families sometimes suspecting the disease by chance or following the broadcast of a television program on the topic.

Once the diagnosis has been made and the treatment plan defined, the time needed to accept the TS diagnosis varies from one person to the next. It is common that parents discovered what TS was at the moment of the diagnosis. Parents have sometimes been reassured about symptoms thanks to the Internet, gradually allowing for the acceptance of their child's diagnosis. Announcing the diagnosis to family and friends or at school does not always occur right away, and meeting other children with TS can help them come to terms with the diagnosis.

"When we were driving back home in the car with my husband and son, the only thing I said was: «I'm telling you, no one is to talk about Tourette syndrome to anyone. It is forbidden that this leaves the car ». It was too much for me.” (Parent #8).

### 3.3.4. The emotional and relational axis

The emotional and relational axis theme groups together the greatest number of subthemes mentioned by interviewees - seven in all. In it we find diagnostic delay attributed to the parents and the child; the parents' distress and loneliness during the journey; the emotional impact of the diagnosis; the notion of guilt; the child's distress; the vision of the future; and finally the parents' involvement in informing themselves and others about TS (Fig. 2d).

The emotional and relational aspect seems to have an impact on diagnostic delay. The first symptoms are sometimes
downplayed by the families themselves, who attribute tics to nervousness, another disease, fatigue or boredom, or think that the tics are temporary. A family history of tics could also contribute to downplaying the signs. Once the initial consultations had failed to produce answers or a diagnosis, parents were weary of re-explaining symptoms to a new healthcare professional, and some children even refused to attend a consultation. As a result, parents could feel particularly distressed or lonely during the diagnostic journey. Feelings of powerlessness and psychological difficulties were widely reported by interviewees. Parents felt like they had to take the initiative to reach a diagnosis, otherwise they would have not gotten any answers. In particular, the waiting time to obtain a consultation was brought up.

"It's a battle for parents and it is very difficult. [...] It takes a very long time to get an appointment with a specialist. I remember that I cried for a whole year. I begged the hospitals to give me an earlier appointment [crying]. [...] I took it all very badly. You do nothing but cry. You have to change jobs to be with your child, knowing that you have to accompany them every day and fight, fight, fight. fight against everyone, because otherwise it's impossible." (Parent #5).

In addition, parents had to deal with the views of people more or less close to them, the views of institutions, and their own views regarding the symptoms, especially when a family history of tics was present. Taken together, the parent's relationship or professional life could be substantially affected.

Once the diagnosis has been made, the impact on the child, the parents and the family was evident. For parents, it was essential to put a name to the difficulties. Being given the diagnosis is most often described as a relief, but some experienced it with mixed feelings or even had negative reactions. It was reported that school life improved once the diagnosis was made, for example. On the other hand, parents were sometimes in a state of shock following the diagnosis, or even in denial. After the diagnosis, determining the best educational approach could remain complicated. Parents are required to distinguish between what is related to TS and therefore, requires support, and which behaviors need to be rectified. This difficulty is particularly present during adolescence, and can be a source of tension between siblings. Parents fear treating siblings unequally. The latter frequently confront their parents regarding this issue.

"When she told us about Tourette syndrome I collapsed with relief. I knew it! I knew there was something going on! For me, it was finally recognition of the difficulties my son may be having, and also of what we were going through." (Parent #18).

The notion of guilt often emerged in the parents' accounts, in one of two forms. First of all, there was the parents' guilt about the causes of TS, the way it was managed, or the fact that they noticed the symptoms too late. Then there was also the feeling of guilt experienced by parents at the hands of healthcare professionals or relatives.

"But I do feel guilty, I ask myself if it is something I did or didn't do that made him the way he is." (Parent #1).

"I felt misunderstood and was portrayed as the worried, stressed and stressful mother. And that was actually very unpleasant. Because you know something is wrong but you don't know what it is. But you feel that there is something

going on...and you are portrayed as the overly anxious mother. And I hated that, I absolutely hated that." (Parent #23).

The emotional axis also allowed to show the children's distress. Out of the 25 parents interviewed, 7 mentioned that their children were a danger to themselves, had dark thoughts, or were suicidal. Parents sometimes described their children as being hypersensitive and having feelings of not being valued, citing a sense of injustice.

"I had a child that was about to start middle school who told me: « I'm not doing well, I'm not doing well at all... you will never be able to help me, nobody understands me, and nobody loves me ». She said this while sobbing. At that age, I was no longer washing her as much and I came across marks on her legs. I noticed that she was regularly sticking sharp objects into her skin. She cut everything, so we got rid of all of our scissors, as she cut sheets, and her pajamas and her dolls no longer had any hair. Everything was completely torn to shreds. [...] And it was there that I realized that my daughter was in a deep depression and had started to self-harm. She started to talk to me about death, that there was no point in living and that she would prefer to die..." (Parent #10).

"One evening, my son came home and told me that he couldn't take it anymore and that he wanted to kill himself. He said it was too unbearable and that he could no longer deal with his fits, or with other people. It was at that moment that panic hit!" (Parent #18).

Many parents brought up their concern and lack of perspective in regards to the future of their child with TS. Nonetheless, many said they had been reassured after receiving the diagnosis about the evolution of symptoms, in particular concerning the potential appearance of coprolalia.

"It is adulthood that worries me. Maybe there won't be anything to worry about, but I wonder what it's going to be like. If he gets married, if he wants kids, will he find... will he be able to work? I was once told by someone that he could take his driving test at a certain age, but they added that he might not be able to pass it because some of his tics might prevent him from doing so." (Parent #4).

After a long and arduous path to reach a diagnosis, around 4 out of 5 parents spoke of having a sort of civic responsibility to talk about TS to their family and friends as much as possible, trying to explain it to reduce misconceptions. The informative brochure made by the AFSGT, for example, was distributed in schools, with parents or children directly explaining the diagnosis to the class. Some parents even kept up to date with TS-related research news. It should be noted that mothers seem to have been more present than fathers when it came to managing the diagnostic journey.

### 3.3.5. *Structural axis*

The last theme groups together the three subthemes that describe how the organization of care and medical specialties is able to impact trajectories. The parents' main concerns were diagnostic delay caused by healthcare professionals, the path towards diagnosis and the moment of the diagnosis, as well as their difficulties with follow-up after diagnosis (Fig. 2e).

One of the most talked-about topics was diagnostic delay caused by healthcare professionals. Many parents had been confronted with doctors who had never mentioned or suspected TS, or who had not been honest about their
expertise and had not oriented them towards another specialty. Symptoms were often minimized or attributed to stress and anxiety. As a result, parents widely criticize the lack of knowledge and training provided to healthcare professionals about TS.

"Not knowing the disease that one of your patients has is one thing, but not researching and not trying to get in touch with qualified individuals to learn more, I consider that to be a medical error." (Parent #19).

The path to diagnosis is largely evaluated as a negative experience by parents. The main cause cited was the long diagnostic delay. However, once referred to specialists, the diagnosis was made quickly.

Once the diagnosis had been made, follow-up remained a complex process for parents. Treatments were not always effective, physicians did not seem to provide any particular support following the diagnosis, and parents found themselves once again on their own when it came to dealing with their child's TS. Parents also talked about the costs incurred during the course of this disease, as well as the side effects of treatment. Finally, the diagnosis did not seem to always be believed by the general practitioner.

"In any case, your diagnosis: I don't buy it" (Parent #25).

### 3.4. Focus on the child's point of view

For 6 of the parents interviewed, their children with TS were also interviewed. These children mentioned on average 33% of the codes from their parents' narratives, and the parents discussed 50% of the codes mentioned by their children. Children seem to realize less of what their parents are going through, while parents seem to understand their children's experiences better.

The codes mentioned by the children were not included in the thematic analysis, as it focuses on the parents' narratives. Nevertheless, it is interesting to note some of the topics frequently raised by the children themselves. Half of them recall having mild tics during their childhood, which were not disruptive in themselves but they recall the negative consequences of having these tics (anger from parents or teachers, being teased).

"I remember going to a psychiatrist and taking many medications that traumatized me, and so I don't like taking them now." (Child #1).

Almost all of the children believed that the tics were not normal, and experienced some distress prior to diagnosis. Four of the children interviewed even felt like they were abnormal.

"When I was in seventh grade there were some people who told me that I was not a human being and that I did not deserve to exist. It wasn't easy. [...] I lost a lot of self-confidence, as by constantly repeating it to myself I almost ended up believing it." (Child #3).

"I met psychiatrists that told me that I was just crazy." (Child #4).

Almost all of the children interviewed spoke of the positive impact that receiving a diagnosis had on them in the years that followed.

"I was super happy. I was happy that they had found out what I had. It was during a multidisciplinary consultation. At

first, I was a little stressed as there were many people all around me and I had the impression of being a guinea pig. [...] It was a little intimidating, but I was in the right place." (Child #6).

### 3.5. Associations between belonging to a theme and sociodemographic and diagnostic characteristics.

Supplementary Table 1 highlights associations that are significant at the 95% level and correlation coefficients between belonging to one or more themes, as well as with sociodemographic and diagnostic characteristics.

First, having comorbidities (P = 0.01) or experiencing difficulties caused by symptoms (P = 0.05) were associated with increased child distress. An impact of TS on academic and social life was associated with greater difficulties obtaining administrative and educational management and support (P = 0.004). Also, parents who had been referred for diagnosis and who mentioned the notion of luck often had more difficulties with the post-diagnostic follow-up (P = 0.02) and more often mentioned the need for aids or assistance (P = 0.02).

The analysis of the associations the themes and sociodemographic and diagnostic characteristics showed that the higher the parents' level of education, the more often they referred to the notion of "luck" when being oriented towards a diagnosis (P = 0.01). Parents in a relationship were the ones that most often mentioned the impact of TS on school and social life (P = 0.02), had experienced difficulties with administrative and educational management (P = 0.02), or had needed access to aids/assistance (P = 0.01). On the other hand, those who were single were more likely to have a negative representation of TS (P = 0.04).

The earlier the onset of the child's first symptoms, the more TS had an impact on school and social life (P = 0.01), and the more parents experienced difficulties with administrative and educational management (P = 0.02). The younger the child was at the time of diagnosis, the more often parents needed access to aids/assistance (P = 0.01), and the more often they were oriented towards diagnosis (P = 0.02).

Parents who experienced a short diagnostic delay were the least likely to encounter difficulties with administrative and educational management (P = 0.05). Conversely, those who experienced a long diagnostic delay were the ones who least frequently had a false perception of the syndrome (P = 0.01).

There was also an association between the effect of the diagnosis on relatives being positive and the parents being less worried about their child's future with TS (P = 0.01). In accordance, a negative impact of the diagnosis on the parent was associated with fear about the future with TS (P = 0.05).

## 4. Discussion

### 4.1. Comparison with previous studies

This thematic analysis based on 25 interviews of parents of children with TS identified 19 inductive subthemes grouped into 5 deductive themes. Some of the subthemes concerned all
of the interviewees, ranging from the description of the characteristics of the disease to the distress of parents, and including the impact of the TS diagnosis and the evaluation of the diagnostic journey.

In 2016, a qualitative study focused on the daily experiences and obstacles encountered by 15 parents of children with Tourette syndrome. Four core themes were identified, consistent with the results of our study: coping with challenging behaviors, misconceptions and lack of understanding, negative experiences of education, and lack of support and services for a child with Tourette syndrome [11].

A qualitative study conducted in 2017 helped shed light on the experiences of children and adolescents with TS [12]. Two themes, common to those identified in our study of the parents' narratives, emerged: beliefs about TS and TS-related distress and impairment. A third theme was also identified, concerning coping with TS, which came up less frequently in our interviews. The parents interviewed in our study talked mainly about the impact of the diagnosis, and less about coping strategies for dealing with TS in their daily lives. Furthermore, a longitudinal qualitative study on the psychosocial trajectories of parents following their child's critical injury identified three trajectories similar to those highlighted in our study: resilient, recovering (or acceptance) and distressed [17].

What parents regret the most is the misinformation among healthcare professionals, who often only know about coprolalia and nothing more [18]. A literature review published in 2020 on the research challenges to improve clinical practice regarding TS pointed out that it is indeed complex to predict the evolution of symptoms over time, but that there are several treatment options available to decrease tic severity [19]. It is important for healthcare professionals to be informed in order to orient the patient towards diagnosis and improve management and care.

This general misinformation, including about the comorbidities, prolongs diagnostic delay, reinforces the stigmatization and difficulties experienced by the child at school, and increases the distress of parents who no longer know where to go for answers. As children with TS have more problems with peer relationships [20], it is important to quickly set up a prevention system in the school environment. It has been shown that a brief explanatory intervention in the classroom can increase knowledge and improve the attitudes of classmates towards the child with TS [21].

The path to post-diagnostic follow-up is sometimes no easier than the one before diagnosis, with parents emphasizing the long waiting times for consultations and the high costs involved in a follow-up that should be multidisciplinary [22]. Families with the least favorable conditions in terms of health, education and relationship status are those who seem to report the most difficulties. This is consistent with the results of an ongoing study underlining the role of social support on coping strategies in families with a child with TS [23].

An English study from 2022 focused on exploring social support in a TS-specific online support community [24]. This thematic analysis revealed patients' needs in four areas: (1) "A place to share and ask for information about tics"; (2) "A place to unload my feelings"; (3) "A place where I can find people like

me"; and (4) "place where I can freely share the realities of living with Tourette's". These results reflect a lack of information, support and recognition.

TS appears to have an impact on the whole family unit, from the parents to the affected child, but also on the siblings and close relatives. Only one study by Lee et al. (2007) looked at the impact on parents of having to cope with TS [25]. This study revealed that parents of affected children have a high prevalence of anxiety disorders combined with low self-esteem.

The consequences of TS on affected children and their parents were documented in a survey conducted by the Tourette Association of America (TAA) and are similar to those observed in our study: dark thoughts, discrimination, loss of employment and a financial impact [26].

Our study sheds light on how the parents of children with TS experience the diagnostic and therapeutic pathway. The children's experiences were compared with the parents' accounts for some of the interviewees, which revealed that parents and children do not discuss exactly the same subjects regarding the lived experience of their journeys. A 2007 study on the quality of life of children with TS showed that parents correlated their child's quality of life with the severity of their tics [27], whereas our analysis found that children seemed to be impacted not by the tics themselves, but rather by the social and familial consequences they cause.

Research by Fletcher et al. has underscored promising approaches to improve support for people with tics. One key solution involves developing Continuing Professional Development (CPD) programs for healthcare professionals rooted in evidence-based knowledge of Tourette syndrome (TS) [28,29]. Such CPD training, potentially through webinars, would meet healthcare providers' expressed need for education to improve their ability to care for patients with TS. Additionally, families have highlighted their desire for more community support and awareness initiatives, including school-based educational outreach, training for local healthcare providers, and structured peer and family support networks. Programs like those offered by the Tourette OCD Alberta Network exemplify these solutions, incorporating outreach for teachers and peers and offering family support. These strategies represent a comprehensive framework to improve professional knowledge and community support, ultimately enhancing the quality of care and well-being for those affected by TS.

## 4.2. Study strengths and limitations

Our thematic analysis is subject to certain biases. Firstly, there is a bias in the recruitment of the parents interviewed. Almost all of the patients were diagnosed at the Groupe Hospitalier Pitié-Salpêtrière, so the families interviewed had sufficient resources to reach this service. However, few TS specialists exist, which means that some of the parents whose children obtained the diagnosis come from much further afield than the Île-de-France region. Yet we can see from Supplementary Table 1 that the parents with the least favorable conditions in terms of health, education and marital status are the ones who report a more difficult path. Our analysis may not be representative of all families who have a child with TS. Finally, this analysis does
not include the accounts of families who have never received a diagnosis.

During the interviews, the families' accounts are based on retrospective questions, so there may be memory bias. However, it is safe to assume that the experiences of these journeys, as described in the parents' accounts, are fairly faithful to reality, and constitute a particularly significant and memorable subject for families. Future longitudinal research could provide valuable insights into the experiences of the post-diagnostic journey.

At the interview coding stage, there could have been a bias in the interpretation of the narratives. However, the coding was carried out by a different author from the one who conducted the interviews in order to eliminate these biases. The researcher who carried out the coding work did not have TS, and was not specialized in the disease, which ensured that the analysis was not influenced by such knowledge. A certain interpretative validity was guaranteed by the back-and-forth between authors and the patients and parents. Also, as the interview questions were quite broad, the parents were allowed to express themselves freely, without being suggested any topics.

A certain amount of time has passed between the time the interviews were conducted and the publication of this article. We can hope that the journeys of parents of children with TS may have evolved since then.

When interpreting the themes and codes, it is important to bear in mind the statistical bias associated with the fact that these themes do not encompass every aspect of the subject. We can interpret the number of parents who mentioned a code, but not the number of parents who experienced it.

Finally, the statistical analysis of associations between themes and sociodemographic and diagnostic characteristics reveals only associations, not causal relationships. Also, despite the possible significance of the results in Supplementary Table 1, they can be complex to interpret due to the small sample size, which limits statistical power. Nevertheless, our sample is more than sufficient for thematic analysis.

Despite all these biases, our study is, to our knowledge, the first French study to attempt to share the journey of parents of children with TS.

### 4.3. Conclusion

This study investigated the formal, structural, representational and relational "constraints" contributing to therapeutic and diagnostic wandering, by focusing on the analysis of the lived experiences of parents of patients. By bringing to light the recurring themes experienced by families, we hope that these results will be beneficial to both parents and children with TS, as well as health care professionals. It should be possible to identify professionals along the care pathway in order to increase awareness raising efforts towards certain medical or paramedical specialties. This aspect of the study could evolve in the light of current events within the framework of France's national "strategy for neurodevelopmental disorders" [30] where the public authorities will be setting up coordination and orientation platforms in each department for the diagnosis of neurodevelopmental disorders.

## Funding

This work was financed by the AFSGT.

## Author contributions

AH, PD and VG designed and developed the study. PD conducted and transcribed the interviews. ZB performed the thematic and statistical analyses and drafted the original manuscript. ZB, AH, VG and PD contributed to the interpretation of the data discussed in the manuscript, revised the manuscript and approved the final version.

## Disclosure of interest

AH is a consultant for Noema Pharma.
The other authors have no conflict of interest.

## Acknowledgements

The authors would like to thank the parents and children interviewed who made this study possible. They would equally like to thank Ms. D and Ms. B for their valuable feedback regarding the thematization, and Natasha Barr for the translation. Finally, the authors would like to thank the AFSGT for their support.

## Online Supplement. Supplementary data

Supplementary data associated with this article can be found, in the online version, at https://doi.org/10.1016/j.neurol.2025.03.011.

## REFERENCES

[1] Müller-Vahl KR, Szejko N, Verdellen C, Roessner V, Hoekstra PJ, Hartmann A, et al. European clinical guidelines for Tourette syndrome and other tic disorders: summary statement. Eur Child Adolesc Psychiatry 2022;31:377-82. http://dx.doi.org/10.1007/s00787-021-01832-4.

[2] Worbe Y, Mallet L, Golmard J-L, Béhar C, Durif F, Jalenques I, et al. Repetitive behaviours in patients with Gilles de la Tourette syndrome: tics, compulsions, or both? PLoS One 2010;5:e12959 [https://doi.org/10.1371/journal.pone.0012959].

[3] Johnson KA, Worbe Y, Foote KD, Butson CR, Gunduz A, Okun MS. Tourette syndrome: clinical features, pathophysiology, and treatment. Lancet Neurol 2023;22:147-58. http://dx.doi.org/10.1016/S1474-4422(22)00303-9.

[4] Swain JE, Scahill L, Lombroso PJ, King RA, Leckman JF. Tourette Syndrome and Tic Disorders: A Decade of Progress. J Am Acad Child Adolesc Psychiatry 2007;46:947-68. http://dx.doi.org/10.1097/chi.0b013e318068fbcc.

[5] Robertson MM, Trimble MR, Lees AJ. Self-injurious behaviour and the Gilles de la Tourette syndrome: a clinical
study and review of the literature. Psychol Med
1989;19:611-25. http://dx.doi.org/10.1017/
s0033291700024211.

[6] Szejko N, Robinson S, Hartmann A, Ganos C, Debes NM, Skov L, et al. European clinical guidelines for Tourette syndrome and other tic disorders—version 2.0. Part I: assessment. Eur Child Adolesc Psychiatry 2022;31:383–402. http://dx.doi.org/10.1007/s00787-021-01842-2.

[7] Jafari F, Abbasi P, Rahmati M, Hodhodi T, Kazeminia M. Systematic Review and Meta-Analysis of Tourette Syndrome Prevalence; 1986 to 2022. Pediatr Neurol 2022;137:6–16. http://dx.doi.org/10.1016/
j.pediatrneurol.2022.08.010.

[8] van de Griënt JMTM, Verdellen CWJ, van Dijk MK, Verbraak MJPM. Behavioural treatment of tics: Habit reversal and exposure with response prevention. Neurosci Biobehav Rev. 2013;37:1172-7. http://dx.doi.org/10.1016/
j.neubiorev.2012.10.007.

[9] Mathews CA. Treating Tourette syndrome and other chronic tic disorders: updated guidelines by the European society for the study of Tourette syndrome (ESSTS). Eur Child Adolesc Psychiatry 2022;31:375–6. http://dx.doi.org/
10.1007/s00787-021-01892-6.

[10] Mol Debes N, Hjalgrim H, Skov L. Limited Knowledge of Tourette Syndrome Causes Delay in Diagnosis. Neuropediatrics 2008;39:101-5. http://dx.doi.org/10.1055/s-
2008-1081457.

[11] Ludlow AK, Brown R, Schulz J. A qualitative exploration of the daily experiences and challenges faced by parents and caregivers of children with Tourette's syndrome. J Health Psychol 2018;23(14):1790-9 [doi: 10.1177/1359105316669878].

[12] Edwards KR, Mendlowitz S, Jackson E, Champigny C, Specht M, Arnold P, et al. A Qualitative Exploration of the Experiences of Children and Adolescents with Tourette Syndrome. J Can Acad Child Adolesc Psychiatry 2017.

[13] Paillé P, Mucchielli A. 5e éd, Chapitre 12. L'analyse thématique. L'analyse qualitative en sciences humaines et sociales, Paris: Armand Colin; 2021. p. 269-357.

[14] Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today; 2004.

[15] Elo S, Kyngäs H. The qualitative content analysis process. Journal of Advanced Nursing 2008.

[16] Couture M. La recherche qualitative : introduction à la théorisation ancrée. Interactions 2003;7:127-33.

[17] Foster K, Mitchell R, Van C, Young A, McCloughen A, Curtis K. Resilient, recovering, distressed: A longitudinal qualitative study of parent psychosocial trajectories following child critical injury. Injury 2019;50(10):1605-11. http://dx.doi.org/10.1016/j.injury.2019.05.003.

[18] Schapiro N. Dude, you don't have Tourette's": Tourette's syndrome, beyond the tics. Pediatric Nursing 2002;28:243-6 [249].

[19] Morand-Beaulieu S, Leclerc JB. Syndrome de Gilles de la Tourette : défis de la recherche pour améliorer la pratique clinique. L'Encéphale 2020;46:146-52. http://dx.doi.org/
10.1016/j.encep.2019.10.002.

[20] O'Hare D, Eapen V, Helmes E, McBain K, Reece J, Grove R. Factors impacting the quality of peer relationships of youth with Tourette's syndrome. BMC Psychology 2015.

[21] Nussey C, Pistrang N, Murphy T. Does it help to talk about tics? An evaluation of a classroom presentation about Tourette syndrome. Child Adolesc Ment Health 2014.

[22] Willford S, Deeb W. Scoping Review of Multidisciplinary Care in Tourette Syndrome. Movement Disord Clin Pract 2023;10:868-77. http://dx.doi.org/10.1002/mdc3.13731.

[23] Goussé V, Czernecki V, Denis P, Stilgenbauer JL, Deniau E, Hartmann A. Impact of Perceived Stressm Anxiety-Depression and Social Support on Coping Strategies of Parents Having A Child With Gilles de la Tourette Syndrome. Arch Psychiatr Nurs 2016;109-13.

[24] Soós MJ, Coulson NS, Davies EB. Exploring Social Support in an Online Support Community for Tourette Syndrome and Tic Disorders: Analysis of Postings. J Med Internet Res 2022;24:e34403 [https://doi.org/10.2196/34403].

[25] Lee M-Y, Chen Y-C, Wang H-S, Chen D-R. Parenting stress and related factors in parents of children with Tourette syndrome. J Nurs Res 2007;15:165-74. http://dx.doi.org/
10.1097/01.jnr.0000387612.85897.9a.

[26] Hartmann A, Andrén P, Atkinson-Clément C, Czernecki V, Delorme C, Monique Debes NM, et al. Tourette syndrome research highlights from 2022. F1000Res 2023;12:826 [https://doi.org/10.12688/f1000research.135702.2].

[27] Storch EA, Merlo LJ, Lack C, Milsom VA, Geffken GR, Goodman WK, et al. Quality of life in youth with Tourette's syndrome and chronic tic disorder. J Clin Child. Adolesc Psychol 2007;36:217-27. http://dx.doi.org/10.1080/
15374410701279545.

[28] Fletcher J, Dimitropoulos G, Martino D, Wilcox G, MacMaster F, Arnold P, et al. Developing a provincial patient support network for children and families affected by Tourette syndrome and/or obsessive-compulsive disorder: results of a stakeholder consultation. Child Adolesc Psychiatry Ment Health 2021;15:29 [https://doi.org/
10.1186/s13034-021-00383-5].

[29] Fletcher J, Martino D, MacMaster F, Wilcox G, Pringsheim T. The Tourette OCD Alberta Network: Development of a Continuing Professional Development Program for Community Based Mental Health Therapists. Child Psychiatry Hum Dev 2024;55:1423-30. http://dx.doi.org/
10.1007/s10578-023-01503-2.

[30] Délégation interministérielle, à la stratégie nationale pour les troubles, du neurodéveloppement : Autisme, Dys, Tdah, Tdi. Stratégie nationale 2023-2027 pour les troubles du neurodéveloppement : autisme, DYS, TDAH, TDI. 2023.