Living with Paediatric acute-onset neuropsychiatric syndrome (PANS) – a qualitative study of Children’s experiences in Sweden

Abstract Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a relatively new diagnosis, characterized by an abrupt and dramatic onset of obsessive-compulsive disorder, together with neuropsychiatric symptoms. The study aimed to understand the experience of living with PANS from the perspective of children with the diagnosis. The study employed semi-structured interviews with nine children, aged 10–18 years old, with a diagnosis of PANS. An inductive qualitative content analysis approach was used as a guide for analysis of data. The analysis identified three main categories: (1) “Suffering” reflects the aversive emotional, cognitive, and physical experiences of PANS, and its negative consequences on life; (2) “Powerlessness” reflects a lack of control, difficulties involved with predicting and managing the symptoms, not having words to describe one’s needs, and experiencing a lack of understanding from healthcare providers; and (3) “Being encouraged” entails experiences of finding support and encouragement by receiving flexible treatments, adjusted to the person one is, and having someone who does not give up. The conclusions are that PANS has major negative consequences for the children’s well-being, and they experience limited possibilities to manage the symptoms. Flexible and personally adjusted treatments, and caregivers who are a stable source of support, are empowering.


Introduction
Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a recently defined symptom-based and clinically heterogenous condition characterized by an abrupt and dramatic onset of obsessivecompulsive disorder and/or severely restricted food intake (Chang et al., 2015;Gagliano et al., 2020;Johnson et al., 2019) in combination with at least two concomitant symptoms such as anxiety, mood dysregulation, irritability, aggression, oppositionality, behavioural regression, cognitive deterioration, sensory or motor abnormalities, and/or somatic difficulties (Chang et al., 2015;Johnson et al., 2019;Swedo et al., 2012).However, as PANS is a relatively new, sometimes clinically misunderstood (Salani et al., 2021), and somewhat controversial diagnosis (Wilbur et al., 2019), there is still no broad consensus regarding the diagnostic criteria and the diagnosing procedure of the condition (Chang et al., 2015;Prato et al., 2021).Although PANS is characterized by an acute onset, subsequent clinical development can range from single episodes to more chronic course where symptoms may continuously re-emerge and remit in so called "flares" (Gromark et al., 2022;Johnson et al., 2019;Swedo et al., 2012).Symptoms are known to be severe and to significantly impact and limit children's and families' functioning in association with the acute phases of PANS (i.e. in association with flares [Frankovich et al., 2015]).Thus, while some experience remission, going without symptoms for a year or more, others experience a chronic-static course with their symptoms stably present for a longer period.The onset of PANS often comes in prepuberty, and boys are twice as likely to have the condition (Calaprice et al., 2017).
The aetiology of PANS is still unknown (Chang et al., 2015).However, the high representation of allergies, as well as inflammatory conditions like eczema and asthma in children with PANS, has led to the hypothesis that an underlying immune dysregulation may be a possible explanation of the condition (Calaprice et al., 2017;Johnson et al., 2019).Furthermore, the observed correlations between the appearance of PANS and certain types of infectious triggers, including streptococcal infections, Lyme disease, mycoplasma, and influenza also support this hypothesis (Chang et al., 2015;Swedo et al., 2012).Pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection (PANDAS) constitutes a subgroup of patients within the broader PANS construct, which requires the verified presence of a streptococcal infect (Gromark et al., 2022;Swedo et al., 1998).
In line with the abovementioned hypothesis clinical management of PANS typically involves anti-inflammatory medication and other immunological interventions, including intravenous immune globulin (IVIG) for addressing inflammatory processes (Frankovich et al., 2017), as well as various antibiotics for treating and preventing infections (Cooperstock et al., 2017).Furthermore, patients may also receive established psychiatric treatments such as selective serotonin reuptake inhibitors (SSRIs) or Cognitive Behavioral Therapy (CBT; Hesselmark & Bejerot, 2019).According to suggested guidelines on treatment for PANS in the Nordic countries and in the Great Britain (Pfeiffer et al., 2021), immunomodulatory and anti-inflammatory treatment should always rely on highly specialized teams, and should always be balanced to the symptom severity of the individual child.Also, such treatments should be regarded as auxiliary to the conventional psychiatric treatment, and provided in combination with treating mental health symptoms.The current Swedish guidelines established by The National Board of Health and Welfare (Socialstyrelsen, 2021), as well as the local guidelines published by the Karolinska University Hospital in Stockholm Region (Karolinska Universitetssjukhuset, 2018), assess that the available scientific evidence is vastly insufficient.Thus, both diagnosis and treatment are recommended to be handled as part of research and development and not as routine care.
In regards to previous research, most studies have focused on either clinical and diagnostic features of the condition, or the neurobiology and neurochemistry potentially underlying the symptoms that characterize PANS, applying a variety of quantitative methods.Furthermore, a handful of studies have examined the impact of PANS on family members to affected children.In a qualitative study by Ringer and Roll-Pettersson (2022), parents describe substantial stress related to their children's condition.More specifically, parents reported this stress as mainly being caused by the symptoms associated with PANS, the repetitiveness of the symptoms, lacking control over the situation, the challenges associated with obtaining medical treatment for their children, and managing their overall situation related to their child.In another qualitative study, by McClelland et al. (2015), strong fear of symptoms was identified as a common theme among family members, including the behavioural, emotional and intellectual changes associated with the onset of symptoms.Furthermore, the authors identified frustration about the lack of understanding and the lack of effective treatments, as well as not being listened to, and being met with a sense of disbelief by medical staff.Finally, in a quantitative study by Farmer et al. (2018), parents reported a significant parental burden associated with the condition, including changing school arrangements, reduced work hours among mothers, and experiencing school disruptions.However, to our knowledge no studies have previously systematically and qualitatively investigated the experience of living with PANS, from the perspective of the affected children themselves.This is worrisome, as personal experiences of having an often times disabling condition such as PANS may provide valuable information about how symptoms are perceived, how individuals cope with their condition, and what support may be provided (Ryan & Sawin, 2009;Shelton et al., 2022).Furthermore, such findings could potentially inform researchers and clinicians about ways to address and support these children's psychosocial needs, and provide an overall more nuanced and richer picture of the condition from a qualitative standpoint.Thus, to summarize, PANS is a recently defined condition that is characterized by an acute onset of obsessive-compulsive disorder and restricted food intake in association with other psychiatric or motor symptoms.PANS may episodically or chronically lead to severe functional impairments, negatively impacting children and adolescents as well as their families.Most previous research has focused on clinical features or biological processes underlying PANS symptoms, including immunological responses that may be associated with the condition.However, to our best understanding no previous studies have explored the lived experiences of children with a PANS diagnosis.

Study design
This study employed semi-structured individual interviews with children diagnosed with PANS.The choice of applying semi-structured interviews was the result of the intention to explore individual first-hand perspectives as expressed by the children themselves.Individual interviews allow to conduct an open exploration of the complexity of the person's appraisals, behaviours and emotions (Kvale & Brinkmann, 2009).As the research on PANS is still limited, an inductive approach, which does not restrict the analysis to predefined categories (Azungah, 2018) was deemed appropriate to analyse the verbal data in the current study.

Recruitment procedure and study participants
The recruitment of children and adolescents diagnosed with PANS was done via advertisement on the websites of patient organizations, and in waiting rooms at child and youth medical clinics.Inclusion criteria for participation were children and youth aged 10 to 18 years, with a formal diagnosis of PANS, received after undergoing a psychiatric/medical evaluation by a child/adolescent psychiatrist and a clinical psychologist or by a paediatric neurologist.Contact between the participants and the first author was made when their parents replied to the advertisement.Fifteen parents initiated contact, and they and their child received further written information about the study and terms of participation.A total of nine children with pertaining caregivers agreed to be interviewed.The reason for all the children who did not agree to participate was, according to the parents, the child's health condition.
Participants varied in terms of the child's age at the time of the interview as well as at the time of diagnosis, the course of the symptoms (i.e.episodic or chronic-static), the illness severity, treatment experiences, and sociocultural background.Participants also varied in what region of Sweden they lived in, as well as if they lived in rural villages or midsize or large cities.The variation in the regions of residence is relevant in the Swedish context, as every region has its own healthcare system.
However, there was little variation among participation in terms of sex, as only one of the participants was a girl.Table 1 describes the participants' characteristics.

Data collection and analysis
An initial interview schedule was developed by the research team in order to obtain rich descriptions of the children's appraisals, emotions, and behaviours in relation to having PANS.The initial schedule was formulated based on previous studies.Three parents of children with PANS and two social workers who lead support groups for parents with the condition were asked to give us feedback on the schedule.Based on their feedback the schedule was revised to include more specific questions on everyday life situations.The specific questions that were added considered situations at home, such as dinners, morning and evening routines, leisure activities, as well as at school, academically while working in the class, when doing homework, and in relation to peers.Table 2 outlines a sample of interview questions.
The interview guide was treated in a flexible manner, and follow-up probing questions were used to further explore aspects identified during the interviews.
Interviews took place from February to September, 2021, were conducted face-to-face at the participants' homes, and lasted between 15 to 50 minutes.All interviews were conducted, audio-recorded, and transcribed by the first author.Participants were not offered compensation for their participation.
An inductive qualitative content analysis approach suggested by Elo and Kyngäs (2008), was used as a guide for the analysis of data.The reason for applying this method of analysis was that it is a contentsensitive method that enables researchers to explore the meanings of communication, as well as to intentionally move from the original data to categories of meanings that are extracted from it, with the overarching aim of analysing each interview as deeply as possible (Elo & Kyngäs, 2008).We thus found this method suitable to analyse our transcribed interviews based on our limited sample of participants.Furthermore, we chose to apply an inductive approach to the analysis of our verbal data as constructing categories based on the data is recommended when there is lack of previous knowledge about a certain phenomenon) such as children's own experience of living with PANS.
The data analysis focused on the manifest content and involved three stages: open coding, creating subcategories and abstraction (Elo & Kyngäs, 2008).In the first stage, the open coding, the data was broken up into its components, parts, and properties, and defined by the actions and meanings described by participants.Units of meaning were coded by the semantic content of them.This stage results with codes that together describe all aspects of the content.In the second stage of the data analysis, the creating of subcategories, codes were sifted, organized, and synthesized into higher order headings.Grouping of codes involved searching for similarities and differences between codes.

Table 2. Sample of initial interview questions
Initial Open-ended Questions (1) Tell me about a regular day in your life/your family/friends/Is there any activity you like to do?
(2) How does it feel to have PANS?
(3) Does it come and go?Is it the same?What do you think/feel about it?(1) How do you think the future will be?What do you think will help you?
(2) Is there something else you think I should know in order to understand what it is like to be a child with PANS?
Grouping of codes was done not only in relation to what makes a code a part of one sub-category, but also in relation to what makes it not being a part of another (Elo & Kyngäs, 2008).
In the third stage, the abstraction, subcategories which described components of similar aspects were grouped together, and rubric were chosen based on content-characteristic.The data analysis was supported by NVivo 12 software (QSR International Pty Ltd, 2020) In order to increase the trustworthiness and transparency of the data collection and analysis, the authors repeatedly discussed and negotiated the various possible interpretations of the data, as well as our personal positioning in the course of carrying out this research.Disagreements in interpretations and the categorization of data were discussed and used to refine the coding.

Ethical information
The study was reviewed and approved by the Swedish Ethical Review Authority, approval number 2020-06554.Written informed consent was obtained from each participant and parent before inclusion in the study.

Results
The analysis of interviews resulted in three main categories, together generating a conceptualization of the experience of living with PANS from the perspective of children who live with the illness.The first category, "Suffering", constitutes experiences related to the consequences the illness has

PANS complicates everyday life
• Significant consequences of PANS that complicate all aspects of life • Large differences between life with and without PANS Powerlessness Having no control • The symptoms are stronger than their own motivation • Lacking effective techniques for managing the symptoms • The symptoms are unpredictable; having difficulties identifying patterns

Having difficulties explaining
• Not having words to describe and convey the experiences in their body • Shame is a reason for not telling others Not being listened to • Healthcare providers pay attention to only part of what they say • Disbelief from others • Healthcare providers downplay the seriousness of their problems • Not being involved in their own clinical treatment

Being encouraged
Receiving a treatment personally adjusted to me • Positive effect of treatments that are adapted to the individual's needs and conditions, as opposed to receiving a treatment that is shaped generally, based on general guidelines or a manual • Positive effect of flexible treatments, based on the children's motivation Having someone who does not give up • The experience of having an adult who never gives up as a main source of hope on the children; involving their well-being, development, and everyday functioning.The second category, "Powerlessness", entails experiences related to a lack of control and difficulties involved with managing the symptoms.The third category, "Being encouraged", includes experiences in which the children find support and encouragement.Table 3 describes a summary of identified categories and subcategories.

Suffering
When the children talked about their experiences of the symptoms, suffering was a recurring description.Two sources of the experience of suffering were identified: the pain or distress caused directly by the symptoms themselves, and the suffering caused by the implications or consequences of the symptoms on their functioning in everyday life.The rapid, dramatic appearance of the symptoms had led to fear and confusion.

PANS hurts in the body
PANS involved negative emotional, cognitive, and physical experiences, which caused the children to suffer.Experiences that the children told about included physical pain, anxiety, fears, lack of energy, irritation, self-blame, losing touch with reality, difficulty focusing, losing patience, and having difficulties solving problems.An interesting feature of the children's descriptions was the intensity of the distressing experiences.When they described their anxiety or irritation, for example, they often emphasized the intense magnitude of the experiences, as expressed in the following quotation: When I have PANS, a little thing can make me really mad.But it actually doesn't matter and I don't really care that much about it.I don't usually get mad about it.But during the time that I have PANS I get really, really mad about those things.

PANS complicates everyday life
From the children's descriptions, it was clear that PANS had significant, overall consequences on their everyday life.It complicated all aspects of life, in all arenas: the ability to be independent and see to one's own basic needs; to be social with one's friends; to learn in school; to develop and enjoy one's own interests; and to thrive at home with one's family.
A frequent description was the significant difference between life with and without PANS.While life without PANS was enjoyable and pleasant, life with PANS was painful and very limited.In the following quotation, the child describes how the illness limited his ability to learn at school: Before PANS I was a really good student in school.I'm usually pretty good at math and Swedish.But then, I was suddenly a completely different student.Things like reading and listening during class, it got much harder.I could hardly do any assignments.I got more disruptive during class, fought more with friends during class.I had to re-read things several times and my head stood still.Sometimes it was hard to work out the easiest equation.

Powerlessness
A recurrent experience that was expressed by all participants was a feeling of helplessness and powerlessness in relation to their illness.The analysis identified three reasons for the experience of helplessness: a lack of control over the symptoms, the difficulties they had in explaining them, and the experience of not being listened to by healthcare providers.The experience of helplessness was linked to frustration and sadness.

Having no control
Several children described PANS as an uncontrollable monster.Lack of control involved three aspects.The first was that the children felt that the symptoms were stronger than their own will or ability to reduce their intensity.Although they had a strong desire to be able to control the symptoms, their efforts failed.This experience is exemplified in the following quote: It's not really possible to control myself, it just comes.Put it like this: If you're filling a bucket and it overflows; if the water keeps running, you can't stop the water from overflowing, sort of.That's kind of the feeling I have.
The second aspect related to the children's experiences of not being able to control or manage their symptoms was their lack of effective techniques for doing so.Furthermore, they generally expressed little faith in whether such techniques even exist.Several children reported that they believed that the only way to manage the symptoms was to avoid others by locking themselves in a room or to sleep a great deal.
The third aspect that contributed to the experience of not having control was the unpredictability of the symptoms.According to most of the children, the symptoms were not constant but rather came and went unpredictably.The children had difficulties identifying a pattern.Some experienced that the symptoms were more intrusive when they were tired or hungry, while others could not identify any preconditions linked to their symptoms.For several children, the experience of not being able to predict how they would feel in the short term during the day, or in the long term over a longer period, caused constant distress and a fear that the symptoms would occur.Some children emphasized the difference between PANS and more stable and predictable medical conditions, such as having diabetes or other neuropsychiatric conditions, to clarify the frustration associated with unpredictability.This is expressed in the following citation: I have dyslexia, and I always have a hard time reading.But it's not the same with PANS.It doesn't feel like something that's constant.It comes and goes, and I don't understand why and what makes it come back.

Having difficulties explaining
An experience that many participants expressed was their difficulties explaining and describing in words what their symptoms meant.Not having words to describe and convey their emotional, cognitive, and bodily experiences of the illness had posed an obstacle to their asking for help.For example, one of the children talked about the experience of not knowing how to describe to friends the experience of PANS: I talked some with my friends.It was hard.I didn't really know what I should say.I didn't have a problem telling them about it but I just didn't know what I should say, I kind of had no words to explain how it felt.Some of the participants said that shame was also a reason for not telling others about their difficulties.They were ashamed of how they felt and the fact that they could not control themselves, and were afraid others would perceive them as "crazy".

Not being listened to
All of the children experienced situations in relation to contact with healthcare providers in which they experienced that they were not listened to.Their experience that healthcare providers often paid attention to only part of what they said, that they were not taken seriously, or that they were met with disbelief, is expressed in the following quote: It feels like when I'm sitting there and talking there's nobody listening.They just think "I'll just write, like, medicine".It doesn't really feel like they're listening.They listen to what they want, and then puzzle it together into something.They choose the parts they want, and then they say "You have this diagnosis, so you should have this medicine".Some children also experienced that they were not involved in the clinical treatment and did not receive information about what their treatment involved.

Being encouraged
The experience of being encouraged and feeling hopeful was related to two aspects: receiving an effective treatment that personally adjusted to their needs, and having someone, an adult, who does not give up.

Receiving a treatment personally adjusted to me
The children's general experience was one of undergoing treatments that were determined by a clinician with no, or very little, involvement from themselves.This includes both pharmacological treatment and psychotherapy based on cognitive behavioural approaches.However, some participants experienced positive effects of undergoing treatment that had been adapted to their individual needs and conditions, as opposed to receiving treatment that was designed generally, based solely on guidelines or a manual.These participants experienced that controlled treatments that lacked flexibility and the possibility of adaptation were not only ineffective but also led to a worsening of symptoms, as well as frustration and hopelessness.On the other hand, when the treatment was flexible, based on the children's motivation, and adapted to the specific conditions, participants experienced that they were empowered.Such an experience is expressed in the following quotation: I had someone treating me who really worked with me as a person instead of working with me as a disease.She helped me much more than everybody else has, because she saw me as a person.What I like, which experiences I've had before in life, what I want in life.She worked more like "This is you as a person; how do you want to live your life and how can we together make it so that you have the life you want -despite PANS".

Having someone who does not give up
In the interviews, several children expressed a fear of being completely alone in dealing with PANS, and of being abandoned by others.Thus, the experience of having an adult who never gave up, someone who struggled and helped them manage the disease even when the symptoms were difficult to manage, was a main source of hope.A particularly moving description of this experience can be found in the following quote: The only one who never gave up was Mom.She never gave up.I'm incredibly thankful for that -that she was there … And I mean, she's not trained to provide treatment.She did what she thought would keep me alive.For that, I'm very thankful.Because I know, if she hadn't been there I wouldn't be sitting here today.Mom was always there and tried to help in every way.

Discussion
The current study used a qualitative design to explore the lived experience of children diagnosed with PANS in regards to how they may perceive their symptoms, the manageability of the illness, and the support these children receive from others.To the authors best knowledge, this is the first study examining how children with PANS experience their condition.
The findings from our interviews indicate that PANS has major negative consequences on children's well-being and everyday functioning.In the interviews, the participating children describe how they suffer from unpleasant physical, emotional, and cognitive experiences, and that they experience difficulties in all arenas of life.In addition, due to the abrupt and dramatic onset of the illness, and the unfamiliarity of these experiences, the symptoms cause intense fear in the children.Also, the characteristic of PANS coming in episodes-and the significant difference the children experience between episodes with the symptoms in which life is a struggle and episodes without the symptoms when they feel like any other child-contribute to their perception of threat.Furthermore, the results showed that children with PANS experience that they have no control over the symptoms.The perception of the symptoms as stronger than one's own motivation, the lack of strategies for managing them, and the unpredictability of their appearance, contribute to an experience of powerlessness.
In addition, the difficulties the children have in describing to others what is happening with them, due to a lack of words or because they feel ashamed, constitute an obstacle in seeking help.Also, the experiences of not being listened to or being undermined by healthcare providers may lead to perceived limited possibilities to receive help.Thus, children with PANS are in a position in which, at the same time that they experience a vast threat to their well-being, they also experience an inability to manage this threat themselves, and to have limited possibilities to receive help from others.However, when the children perceive flexibility from providers they experience this as empowering.The results showed that when healthcare providers were flexible and personally adjusted treatments to the specific needs and wishes of the child, rather than relying on their own assumptions or manuals, the children felt supported by the treatment.Also, having an adult who does not give up and helps them manage their symptoms is an encouraging experience.
Our findings corroborate with other studies that have identified grave psychosocial impairments associated with a PANS diagnosis (Frankovich et al., 2015;Wilbur et al., 2019).Furthermore, the participating children in the current study described a fear and powerlessness in regard to their symptoms that maps onto previous findings, where parents to children with PANS have described similar experiences (McClelland et al., 2015).The participants in our study clearly emphasized the importance of tailoring treatments to their specific needs and preferences, in line with current international and Swedish guidelines on PANS treatment (Karolinska Universitetssjukhuset, ; Pfeiffer et al., 2021;Socialstyrelsen, 2021).Unfortunately, and perhaps related to the clinically misunderstanding of the condition (Salani et al., 2021), and the controversy related to the diagnosis (Wilbur et al., 2019), all participants described experiences of not being listened to within the healthcare, and lack of participation in choosing treatment options.
The findings from our study also indicate the significant importance of parental support in coping with PANS.This is perhaps not surprising, as previous research has outlined the general need for supporting parents to children with chronical medical conditions in (Smith & Kaye, 2012), and the specific need of supporting parents to children with rare medical diseases or conditions in particular (Pelentsov et al., 2016).Thus, and importantly, as PANS is known to substantially and negatively affect parental stress (Ringer & Roll-Pettersson, 2022) and overall parental burden (Farmer et al., 2018), an implication from our findings may be the importance of providing psychosocial support to parents to children with PANS in addition to the psychiatric and medical care that the child may receive, to ensure parents' ability to continuously support their children.
The current study has a number of methodological limitations that are important to illuminate.Although variation among participants was achieved in terms of age, sociocultural background, severity of illness, and clinical experiences, little variation was achieved in terms of sex.This may limit the transferability of the results (Shenton, 2004), as it is possible that girls' experiences are not represented in the suggested conceptualization.It should also be noted that we included a broad age range of participants, and that the experiences as well as the ability to verbally describe such experiences may differ substantially between a of a 10-year-old and an 18-year-old.Thus, one may argue that transferability is limited to children of various ages more generally, albeit not more specifically to younger or older children (i.e.adolescents) with PANS.
Furthermore, only a limited number of children (i.e.nine children) participated in the current study, and it is possible that a larger number of participants would have provided a more nuanced image of what the experiences of living with PANS may entail, as we did not conduct any saturation analysis to ensure that data saturation was achieved (Sargeant, 2012;Saunders et al., 2018;Vasileiou et al., 2018).However, considering there is no previous research where children diagnosed with PANS' voices are allowed to be heard, and as the condition is relatively rare (Jaspers-Fayer et al., 2017), we still believe that the current study may provide a valuable contribution to the field.Moreover, as in every research study, it is important to highlight the relevance of the study's social and cultural context (Shenton, 2004).Further qualitative studies on children's experiences of PANS from different social and cultural contexts could hypothetically provide more and perhaps differing information about PANS is experienced in regards to medical care, overall support systems, parental roles, etc.Thus, to summarize, PANS is a relatively new diagnosis, characterized by an abrupt and dramatic onset of obsessive-compulsive disorder, together with neuropsychiatric symptoms.The current study aimed at qualitatively exploring children's experience of living with PANS in regards to their symptoms, the manageability of the illness, and the support the children receive from others.Our findings indicate that PANS is experienced as a disabling condition, striking fear in the children, with a lack of control over the symptoms.To support children with PANS, healthcare providers need to adapt and individualize treatments to the needs and preferences of the children, in a collaborative process.Furthermore, parental support seems to be essential for children diagnosed with PANS.Based on previous research on parental stress and burden, it is thus of utter importance that parents to children with PANS receive psychosocial support, if preferred, to allow for them to support their children in managing their condition.

Table 1 . Participants' characteristics Children's characteristics Mean/median age or number of participants
*Children living alternately and approximately equally with each parent after a parental separation.
Tell me about specific everyday activities when you feel your PANS.What happens?What do you think/do/ feel?What do you think/feel about your behaviour?(2) Tell me about the first time you felt that you had PANS.What did you think and how did you feel?What did you do? (3) If the symptoms come and go: Tell me about the second time you felt PANS.What did you feel/think/do? (4) Tell me about a specific situation that you think works well.What does it look like?What do you do/think/ feel?
(5) Tell me about what medical treatment(s) you have received.How was it/were they?(6) Tell me what it was like to receive the PANS diagnosis.What do you feel/think about it?(7) In what ways has PANS affected your life?School/being with family/friends/What do you do/feel/think in such situations?How do others react?Is there someone who gives you support in these situations?How?How do you think/feel/react then?Concluding Questions

Table 3 . Summary of identified categories and subcategories Category Subcategory Description of subcategory
• Aversive, unpleasant, and intensive emotional, cognitive, and physical experiences