Introduction

Attention-deficit/hyperactivity disorder (ADHD) is an early-onset and pervasive neurodevelopmental disorder. According to DSM-5 (American Psychiatric Association, 2013), ADHD includes core symptoms such as inattention, impulsivity and/or hyperactivity that persist for at least six months in different situations. These features of ADHD adversely affect the skills children need to function in everyday life and lead to significant impairments in many areas, including social and academic functioning (Sciberras et al., 2011). In children with ADHD, cognitive impairments, especially in social information processing, can lead to impulsivity and aggressive behaviors (Andrade et al., 2012). While the prevalence of ADHD varies in studies conducted in different countries, systematic reviews suggest that it is between 2% and 7% worldwide (Sayal et al., 2018; Song et al., 2021). A heterogeneous condition with persistent symptoms that impair functioning in multiple settings, ADHD is associated with long-term functional limitations as well as psychiatric and somatic morbidity, which often persist into adolescence and adulthood (Claesdotter et al., 2018). In a longitudinal study conducted by Biederman et al. (1998) in which children with ADHD were followed up, it was revealed that ADHD often leads to various adaptation and emotional difficulties at a psychopathological level starting from the school years.

During their school years, children with ADHD experience various difficulties, especially in relationships with their peers. It has been revealed that children with ADHD are rejected by their peers and peer rejection during school years predicts many long-term negative outcomes such as delinquency, alcohol and substance abuse, and anxiety disorders (Mrug et al., 2012). It has also been revealed that children with ADHD are more likely to be bullied and victimized by their peers (Sciberras et al., 2012; Orengul et al., 2023). In addition to peers, children with ADHD have negative relationships with family members, which subsequently has negative effects on family relationships and parents’ mental health (İmren et al., 2013). Studies show that parents of children with ADHD experience more personal and parenting stress (Craig et al., 2016; Schirl et al., 2022) and feelings of inadequacy (Deault, 2010), have lower self-esteem, and that the severity of ADHD symptoms in children is also associated with parenting stress (Chen et al., 2017; Muñoz-Silva et al., 2017; Jendreizik et al., 2023). ADHD symptoms and the difficulties experienced by children significantly increase the caregiving burden of parents (Carol Ho et al., 2011) and reduce both family functioning and quality of life (Peñuelas-Calvo et al., 2021; Piscitello et al., 2022). Parents of children with ADHD have reported experiencing various negative emotional states such as exhaustion, hopelessness, anger, and helplessness associated with high levels of daily stress (Corcoran et al., 2017; Liu et al., 2023). Compared to parents of children without ADHD, these parents have a higher incidence of depressive disorders, anxiety disorders and substance-related disorders (Cheung et al., 2015). A recent study by Lu et al. (2024) found that parents of children with ADHD were more than four times more likely to be depressed; in addition, parenting style influenced depression, with authoritarian parents experiencing more depression. In this context, it has been suggested that the risk of maternal depression is further increased when the mother is the sole caregiver. In another recent study, Liu et al. (2023) found that the level of hopelessness experienced by caregivers of children with ADHD increased the level of depression and anxiety experienced by these caregivers. The study also found that parental hopelessness was associated with attention deficit symptoms in the child, parenting stress and stigma. In another study, Marquet-Doléac et al. (2024) conducted a systematic review of studies of behavioral parenting training for parents of children with ADHD and found that behavioral parenting training improved parents’ coping skills and sense of self-efficacy, reduced negative parental behaviors, and improved children’s symptomatology and families’ quality of life. According to Breaux and Harvey (2019), the difficulties experienced by parents not only lead them to seek professional support, but also constitute a risk factor for challenging behavior in children and affect adherence to interventions.

Although research has shown that ADHD negatively affects family functioning and parents, no studies have been conducted in Turkey to examine the experiences of families with children diagnosed with ADHD. It is thought that studies involving an in-depth examination of how parents who have a child diagnosed with ADHD and personally experience the effects of the disorder make sense of their life experiences may provide clinically valuable information and facilitate the planning of effective interventions, and therefore will have a significant methodological value. In addition, it is believed that a detailed examination of the life experiences of families with children diagnosed with ADHD will contribute to studies aimed at supporting families and providing a family environment capable of supporting the development of the children and facilitating their adherence to treatment. In this context, this study aimed to provide an in-depth, context-sensitive and integrative understanding of how parents of children with ADHD experience the disorder in daily life, their meaning-making processes related to ADHD, and especially the impact of the diagnosis on parents’ perceptions of both their children’s challenging behaviors and their ability to manage these behaviors. In this respect, the aim of the study is to determine the views and experiences of the parents of children affected by ADHD.

Method

Design of the research

This research was based on the interpretivist paradigm in which the researcher tries to understand and describe the inner-subjective world directly from the subjective point of view of participants. Thus, the interpretivist paradigm is anti-positivist, voluntary and ideographic, as from an ontological perspective, the aim is to capture the meanings, experiences, and perceptions of participants in this paradigm, whereas epistemologically, it is assumed that experiences can only be captured by listening to what the participants express since they are living the experience themselves (Gunbayi, 2020). The present study, which aims to examine the life experiences of parents with children diagnosed with ADHD, was conducted using a phenomenological research design, one of the qualitative research methods. The focus of a phenomenological study is the subjective experience of individuals and the aim is to discover how people make sense of their experiences; thus, the researcher seeks to reveal the essence and meaning of the experiences of individuals about a particular phenomenon (Creswell, 2003; Patton, 2015). In this context, a phenomenological research design was adopted in this study since the aim was to determine how parents make sense of and perceive the experiences of having a child diagnosed with ADHD. In line with the aim and research design of the study, in-depth interviews were conducted with parents who had experienced this phenomenon.

Study setting and participants

The study was conducted in a state hospital in Bursa between November 2021 and March 2022. The outpatient clinic of the hospital provides outpatient mental health services. A total of four child and adolescent mental health psychiatrists, three mental health nurses, four child development specialists, four psychologists, one speech and language therapist and one social worker were working in the outpatient clinic during the study period. The outpatient clinic comprised 14 interview rooms, a play therapy room, an occupational therapy room, a testing room and a playground.

The participants of the study were selected through purposive sampling with the criterion sampling technique to allow situations that were considered to contain substantial information to be studied. The participants of the study consisted of parents of children aged 7–12 years who had been diagnosed with ADHD according to the DSM-5 (American Psychiatric Association, 2013) diagnostic criteria. In this regard, 13 parents with children diagnosed with ADHD who were admitted to the Child and Adolescent Mental Health Outpatient Clinic of the hospital were included in the study. The inclusion criteria for the children were determined as having combined type ADHD, which refers to ADHD with both inattention and hyperactivity/impulsivity, being 12 years of age or younger, and being on medication. The exclusion criteria included the presence of another psychiatric or neurological diagnosis comorbid to the ADHD diagnosis. The number of participants in the study was determined according to data saturation. In this regard, data saturation was considered to have been reached when the answers given by the participants were repeated and new data collected did not reveal any new themes, information or findings on the research topic. During the analysis it was noted that the final interviews repeated previous statements and provided no new information, and it was accepted that data saturation had been achieved at this point. After data saturation was reached, the study was completed with a total of 13 parents. Interviews were conducted face-to-face with the participants. One of the children included in the study was 7 years old, three were 8 years old, four were 9 years old, three were 11 years old, and two were 12 years old. The average age of the children was 9.5 years. Twelve of the children were male and one was female. The characteristics of the participants are shown in Table 1.

Table 1 Characteristics of the participants
Full size table

Researcher characteristics

The research team included two child and adolescent psychiatrists, three child development specialists and an educational scientist. Interviews with the parents were conducted by the two child and adolescent psychiatrists who had previously conducted scientific studies on the research topic and had experience in the treatment of children with ADHD. One of the interviewers had been working with children with ADHD for 18 years and the other for nine years. The educational scientist in the research team has worked as a qualitative researcher for 20 years, has given various trainings on this subject, participated in conferences as an invited speaker and conducted many qualitative research projects.

Data collection

The interviews were conducted by two child and adolescent psychiatry specialists who were part of the research team. The selection of parents for inclusion in the study was performed by these psychiatrists from among those who presented to them for the first time in the clinic and met the inclusion criteria. By selecting the participants from amongst the parents who were first time visitors to the clinic, the aim was to ensure that the relationship between the specialist and the parent would not affect participant engagement and responses. Parents were informed about the content of the study and written informed consent was obtained from those who agreed to participate. The parents were invited to the hospital for the interview on a date convenient to them and an appointment was made for a suitable time accordingly.

The interviews were conducted face-to-face in a quiet and empty room in the psychiatry outpatient clinic. Individual interviews with each of the participants lasted an average of 45 min and were recorded with a voice recorder. A personal information form was administered and semi-structured interviews were conducted to collect data. The personal information form prepared by the researchers consisted of questions on socio-demographic characteristics and the child’s ADHD diagnosis, such as the child’s gender and age, age at diagnosis of ADHD, number of siblings, family income status, and family type. The semi-structured interview questions were also prepared by the researchers by examining the related studies. The interviews included seven basic questions to understand how parents make sense of and perceive the experiences of having a child with ADHD. The questions are given in Appendix 1.

Analysis of data

The data were analyzed using Giorgi’s descriptive phenomenological psychological method (Giorgi et al., 2017), which focuses on describing rather than interpreting participant experiences. This method assumes that individuals’ experiences are unique, while also allowing the researcher to integrate the participants’ experiences and avoid their own assumptions about the subject. Accordingly, in the analysis, researchers do not add their own interpretations, but use direct quotations.

Giorgi’s method is comprised of five steps (Giorgi et al., 2017). In this regard, the audio-recorded interviews were initially converted into verbatim transcripts using the Microsoft Word program. The transcripts were cross-read by the raters several times to avoid personal bias. Secondly, by adopting a scientific phenomenological reductionist attitude, assumptions about the phenomenon under study were set aside. For this purpose, a confirmation review was conducted to ensure transparency and the codings made by two different researchers were compared with each other as well as with the raw data. In this way, the aim was to ensure that the researcher was both objective and unbiased while reliability was also ensured. Leading and judgmental questions were avoided during the data collection process. Thus, the aim was to actively listen to the participants by avoiding personal opinions and bias. Additionally, during the analysis phase, the researchers used direct quotations from the participants’ responses without adding their own interpretations. When constructing and categorizing psychological meaning units, the participant data were adhered to and no other opinions were added. Third, psychological meaning units (phrases, sentences and paragraphs) were identified by carefully reading the transcripts. In the fourth and fifth steps, the identified meaning units were classified according to their similarities, and the main themes and sub-themes that ensured the integrity of meaning were created (Giorgi et al., 2017).

Ethical considerations

Before starting the research, ethical permissions were obtained from (blinded for review). The research was conducted in accordance with the Declaration of Helsinki. Written consent was obtained from all parents. Accordingly, the participants were informed about the purpose of the research and it was stated that participation in the research would be carried out on a voluntary basis, as well as that their names would not be mentioned and only their coded names would be used. It was also stated that the interviews would be recorded with a voice recorder, the voice recordings would be transcribed verbatim, and the data obtained would remain confidential.

Rigor

In qualitative research, rigor is ensured via the criteria of credibility, transferability, confirmability, and dependability (Lincoln & Guba, 1985; Cohen et al., 2007; Gunbayi, 2018). For credibility, while preparing the interview questions, a conceptual framework was created according to the review of the relevant literature. In this regard, data saturation was determined by transcribing the data after each interview. The saturation of themes was determined by the repetition of content and codes, and by the lack of emergence of new information. In the content analysis, the themes and sub-themes of these themes and the relationships between the themes were checked. The study also used long-term interaction, participant confirmation, pilot application and expert review strategies to ensure credibility. Interviews for long-term interaction were conducted by two separate researchers who were child and adolescent psychiatrists. Both researchers had extensive experience of working at the hospital where the data collected were as well as with children with ADHD and their families. For participant confirmation, the researchers summarized the data to the participants immediately at the end of the data collection process. Thus, participants were given the opportunity to add their opinions and experiences, where applicable. Before starting the data collection process, the interview protocol was tested in a pilot interview. All stages of the research, including the research design, data collection process, data analysis and writing of the results, were submitted to expert opinion for peer debriefing. Modifications were carried out in line with the experts’ opinions.

Transferability involves providing sufficient information so that readers can assess the similarities and differences between the research environment and their own environment (Streubert & Carpenter, 2010). In the present study, transferability was ensured by introducing the setting and participants, choosing the purposive sampling method, determining the inclusion and exclusion criteria, and explaining the data in detail. Triangulation was achieved through expert review and the involvement of different researchers in the analysis and interpretation of the data. In this study, the process of collecting and analyzing the data were both performed by more than one researcher. For confirmability, data were coded separately by all authors, and then the codes and themes were discussed in terms of similarities and differences. As NVivo calculates percentage agreement and kappa coefficients for each combination of node or case and file, nodes and related quotations of the participants were transferred to calculate agreement statistics via kappa coefficient. As a result, the kappa coefficient of the themes of the transcripts was calculated as 0.81, which indicated a perfect level of agreement between themes (Landis & Koach, 1977). For the confirmability of the study, examples of the answers given by the participants were given verbatim without comment. For this reason, the findings included the participants’ own statements rather than being influenced by the researcher’s prejudices or opinions (Lincoln & Guba, 1985). Finally, for dependability, it was ensured that all collected data were stored such that they were available upon request to assess adherence to a systematic research process in terms of how data were collected and analyzed.

Results

As a result of the data analysis, five main themes were identified: experiences in the diagnosis process (sub-themes: teacher’s guidance, parents’ awareness, guidance of people in the social circle, recognition by the family physician), emotional reactions related to the diagnosis (sub-themes: normalization, sadness, inadmissibility, fear/anxiety), experiences related to social relations (sub-themes: exclusion, conflict with peers, inability to establish social relations), reflections of ADHD diagnosis on the family (sub-themes: domestic unrest, psychological effects on parents, difficulties in social environments), academic difficulties (sub-themes: inability to focus, mobility during class, difficulty in verbal lessons). The sub-themes of each theme are reported in order of saturation from highest to lowest. The sub-theme saturation data are presented in Appendix 2.

Theme 1. Experiences in the diagnosis process

Parents mentioned who first observed the symptoms of ADHD and how they were observed in terms of their experiences in the process of diagnosing their children with ADHD.

Teacher’s guidance

Five of the parents mentioned that the teachers guided them in diagnosing their child with ADHD. Parents stated that teachers directed their children because of difficulties such as inability to focus, inattention, hyperactivity, impulsivity, and anger in the classroom and during lessons.

“According to the teachers at school, he is not relaxed, he is active. If he sits for 2 minutes, he walks around for five minutes or he is in a hurry. When he is trying to do something, he is careless, so even his paintings are not like children of the same age.” (P1).

“Our kindergarten teacher said that one morning, he was so angry that he threw everything on the teacher’s desk on the floor, almost knocking over the desk. The teacher called me and said, he had a tantrum, if you want, get help from a doctor.” (P8).

Parents’ awareness

Five parents reported that they had observed behavioral issues in their children and sought the assistance of a specialist physician. The parents indicated that the reasons for consulting a specialist physician were their children’s low grades, hyperactivity, irritability and speech delay.

“In the fourth grade, when he was very behind in his classes, when I saw a decrease in his academic achievement I took him to the doctor to see if he could help.‘’ (P9).

‘‘He was an extremely naughty child, not listening…. I told my wife that something was wrong with our child. He was trying to talk but he couldn’t express himself and he was getting irritable. When he got angry, he would hit his brother.” (P6).

Guidance of people in the social circle

Two parents reported that individuals in their close social circles had warned them that their children exhibited hyperactivity, irritability, and violent behaviors, and that they should seek the advice of a specialist physician.

“He was very active, he and his brother were violent with each other. He was constantly on the furniture, on the tops of the couches, he was getting irritable wherever we went. My neighbor told me that one of her friends went to a psychiatrist and was very satisfied, she told me to go to a psychiatrist too.” (P13).

Recognition by the family physician

One of the parents stated that the family physician noticed a problem in their child due to problems of hyperactivity and insomnia and referred him to a specialist.

“As a baby, she didn’t sleep, she was always awake and always on the go. Her hands and arms were constantly moving, she never got tired. After that, when she got a little older, the primary care physician noticed. There is definitely a problem with this child, he said, let’s follow up a little more, let her grow up and refer her to a specialist physician.‘’ (P11).

Theme 2. Emotional reactions related to the diagnosis

Parents discussed the emotions they felt when their child was first diagnosed with ADHD.

Normalization

Six parents reported that when their child was diagnosed with ADHD, they focused on the positive aspects of the ADHD diagnosis. They stated that ADHD is not a disease, that they considered the situation normal based on the doctor’s explanations, that it was not a bad situation, and that they did not experience anxiety.

“I didn’t think there anything to react to. It’s not something to be upset about, it’s not a desperate situation. It is not a very serious disease, I do not think it is a disease” (P1).

‘‘My physician didn’t give me a sense of anxiety. He made me feel very comfortable, he said there were worse things, he helped me somehow at that moment.” (P7).

Sadness

Five of the parents expressed their sadness when their children were diagnosed with ADHD. The parents stated that when their child was diagnosed with ADHD, they thought they would fall behind their peers and were upset because they did not have any knowledge about ADHD.

“I’m upset, I wonder if he’s falling behind his peers” (P2).

‘I’m sorry, I’m so sorry. Of course, it was not a subject I knew very well” (P5).

Inadmissibility

Three parents stated that they were unable to accept the diagnosis of ADHD in their children. They indicated that when their children were first diagnosed with ADHD, they did not consider it to be a disease and could not accept it because they were unable to cope with their children’s behaviors.

“At first I thought my child was not sick. How can this be, he can’t be sick. I can’t accept some things very quickly…” (P3).

“At home, I was managing somehow, but at school I could not handle it at all. I could not accept it very easily.”(P5).

Fear/anxiety

Three parents expressed fear/anxiety when they learned that their children had been diagnosed with ADHD. Parents stated that when ADHD was first diagnosed in their child, they were worried about the side effects of drug treatment and whether it would cause any harm in the future. Additionally, when they searched about ADHD on the internet, they found negative information very concerning.

“I was afraid of the drugs in terms of whether it would cause any future damage. I wonder if he will always need to use these drugs? Do drugs have side effects?” (P4).

“I was afraid, frankly, because I do not think that all the information on the internet is very accurate. So some information implied very bad things. I was very afraid that it would actually be worse” (P10).

The views of the parents showed that they experienced negative emotions due to the developmental delay of the child, side effects of drugs, their evaluation of ADHD diagnosis as a disease, and false information on the internet.

Theme 3. Experiences related to social relationships

Parents mentioned the problems of exclusion, peer conflict and inability to form social relationships in their children’s social relationships.

Exclusion

Seven parents reported that their children with ADHD experienced social exclusion. Parents mentioned that their children with ADHD were not accepted by their peers and teachers. Some of the parents stated that their children were not accepted by their peers because they were inattentive, unable to focus on games, disrupted games, and were different from their peers.

‘‘He was bullied a lot. Since his attention span is shorter, he always wants to switch to another game while playing ball. He also wants to make his friends do this too. If they don’t accept it, it becomes a problem. This can make him angry and cause him to hit the ball harder. This is not something that normal children can accept. Some children do not want to play with him because it spoils the game” (P3).

“She definitely doesn’t get along with her peers. She doesn’t have any friends anyway. There are many children in the neighborhood, but she is not friends with any of them because they do not want to be. They initially approach her, but when they see the child’s behavior and attitudes, they move away” (P11).

Some of the parents stated that the teachers could not cope with their children’s excessive activity, inattentiveness in lessons, problems with their peers and risky behaviors, and they did not want the child in the classroom.

“He was walking around on top of the desks in kindergarten and I received complaints all the time. They were calling me constantly, asking if I would come to the school. The teacher stated that he would run from place to place, hit the wall, split his head open. When we sent him to the nursery school, they said, “We cannot cope, something will happen to the child, you should take your child away.” (P12).

Conflict with peers

Seven parents mentioned the conflicts that their children had experienced in their relationships with peers. Parents stated that their children experienced conflicts with their peers due to stubbornness, anger problems, disrupting games and exhibiting violence.

‘’He is very quarrelsome, he always wants his way. If he doesn’t get his way, he immediately kicks his friends out of the game. So he disrupts the game.‘’ (P2).

“For example, when playing with someone, he can be harmful. When he started school, I got a warning from the teacher. He almost cut off a friend’s finger.”(P6).

Inability to establish social relations

One parent mentioned that their child had difficulty in establishing friendships because he could not form sentences to express himself:

“He has difficulty in establishing friendships because he cannot form sentences, he cannot make long sentences to introduce himself.” (P6).

Another parent stated that their child did not establish any friend relationships:

‘’I think he is asocial. He doesn’t have any friends. I take him out in the garden of our apartment building, he cannot play’’ (P5).

Theme 4. Reflections of ADHD diagnosis on the family

Parents stated that their child’s ADHD-related behaviors also affected other family members. Parents reported a number of issues within their families, including conflicts between siblings, between spouses, and between parents and children. They also highlighted difficulties in their own social relationships and environments. Additionally, they discussed the impact of ADHD symptoms on their own mental health.

Domestic unrest

Twelve parents indicated that their children’s ADHD symptoms had a negative impact on their family relationships. Parents who experienced domestic unrest reported that their children’s behaviors such as impatience, hyperactivity, irritability, inability to concentrate in class, aggression/violence and stubbornness resulted in conflicts with siblings and parents.

‘‘His resentment affects us. In other words, he disturbs the peace, quarrels or makes noise. Everything must always be as he says. he is very restless at home. He quarrels a lot with his brother. He is difficult and incompatible.” (P2).

‘’There is restlessness. Because he can’t focus on his schoolwork. He can’t pull himself together. We have a lot of difficulty here. Apart from that, his impulsivity is very high. He is affected by too many things and his focus is immediately distracted.‘’ (P8).

Parents mentioned that the mother’s attention to the child with ADHD and the father’s indifference were sources of conflict between the spouses.

“His moods are tiring, we become aggressive. As a result, I yell at my wife, she yells at me. Come on, take care of the child, he said, look after the child or something. He is waiting for me, I am waiting for him.” (P11).

‘’Mothers often carry more of the burden. Fathers are a bit more callous. The father does not spend much time with the child. I am tired of arguing with my husband. We argue all the time.‘’ (P3).

‘‘…I’m so worn out. My husband still commutes to work, no matter what happens at home. I’m the one who’s always looking after the child at home. My child can’t concentrate, doesn’t listen, doesn’t do his homework and I can’t discipline him in any way. ” (P4).

Difficulties in social environments

Nine parents reported difficulties in social relationships and social settings as a consequence of their children’s ADHD symptoms. Parents stated that they experienced problems in social environments and with people in their social circle because of their child’s excessive activity, uncontrolled behaviors, other people’s negative perceptions of the child’s behavior and their unwillingness to be with the child.

“I started not going with my child to social environments. Because when I go, the problem arises, he gets out of control. Such is the reaction of other parents, I didn’t take him anywhere after a while” (P5).

‘’Other people don’t accept my child’s behavior. My child seems to be seriously unwell to them. I know that I am not even welcome in my family’s house, they say “Please…don’t get angry, don’t be offended, but don’t come here.” Because the child does not stop, she breaks, spills and damages things all the time.‘’ (P 11).

Psychological effects on parents

Seven parents indicated that their children’s mental health was negatively affected by ADHD symptoms, and that they had psychological difficulties. Parents of children diagnosed with ADHD stated that they were worn out, tired and psychologically affected due to the child not doing homework, not listening, receiving poor grades, having complaints from school, exhibiting moody behaviors, the fact that the child was taken care of by a single parent and conflicts between spouses:

‘’Mothers usually carry more of the burden. Fathers are a little more callous. The burden of the house, the burden of work, the burden of the children. So many things are heavy and I have had many conflicts with my spouse at home. I have been taking medication for six years. Before my child was diagnosed, I had a panic attack because of my child’s behaviors. I don’t have the courage to stop taking the medication, I continue to use it.‘’ (P3).

“Because he a child who is grumpy and always complaining, your nerves become frayed too. I took sedatives from time to time.” (P9).

Theme 5. Academic difficulties

Parents mentioned that their children had academic difficulties. The parents’ statements indicate that children with ADHD experience academic failure due to a lack of focus, hyperactivity and reading comprehension.

Inability to focus

Six parents reported that their children with ADHD experienced academic difficulties due to their inability to focus and attention deficit. The parents noted that their children forgot their homework, failed to listen to their lessons, and obtained low grades on their examinations due to their lack of focus.

“There were periods when he forgot his lesson or did not check his homework. He had problems such as not listening to the teacher in his lessons.” (P5).

‘’He has troubles in exams. Especially in multiple choice exams where he has to do marking. He also gets confused when writing. But if he gets a bad grade in such exams, we know that he marks the wrong choices. (P7)

Mobility during the class

Five parents reported that their child’s academic performance was negatively impacted by mobility issues, which are a common symptom of ADHD. The parents stated that they received complaints from the teachers that their children were constantly moving around during lessons:

“The teacher says that the child does not sit at his desk anyway, he smiles like that when he sits down and looks at different places.” (P6).

‘‘…He drops his pencil, picks it up, drops it again, throws it away.” (P10).

Difficulty with verbal lessonsDifficulty with verbal lessons

Three parents indicated that their child with ADHD experienced difficulty in verbal lessons requiring reading comprehension:

“When he learns something new, he eagerly comes and tells me, but he only talks about mathematical issues. He hates reading, reading books, telling stories.” (P1).

“…My child doesn’t understand what he reads. For example, he is good at math, good at adding and subtracting. He reads and reads Turkish and science subjects, but he can’t figure out what they say.‘’ (P6).

Discussion

The aim of the study was to examine the life experiences of parents who had a child diagnosed with ADHD. As a result of the research, the themes of experiences related to the diagnosis process, emotional reactions related to the diagnosis, experiences related to social relations, reflections of the ADHD diagnosis on family and academic difficulties were determined.

In the study, the experiences of parents regarding the process by which their children were referred and diagnosed were sought to be determined. The findings regarding how the diagnosis of ADHD was first made in children indicated that most of the referrals to a specialist were made by the teacher or the parents themselves due to the child’s behaviors such as the inability to focus, inattention, hyperactivity, low academic success, and irritability in both the classroom and at home. Subsequently, it was determined that parents consulted a specialist based on the referral of a primary care family physician or other people from their social environment. ADHD involves symptoms related to inattention, hyperactivity-impulsivity, or a combination of both, which prevent the child from demonstrating the level of functioning expected of peers at home, at school, or in other settings (Parens & Johnston, 2009). The child’s age- and environmentally-inappropriate behaviors, as observed by teachers and parents relative to the behaviors of other children in the same school classroom, are one of the main factors that may contribute to a diagnosis of ADHD (Layton et al., 2018). Classroom contexts often trigger ADHD symptoms and negatively affect the child’s abilities necessary for academic and social functioning when the child needs to sit still, be quiet, and focus (Ewe, 2019). This situation is often observed by teachers and families are referred to a specialist accordingly. Similar to the results of the current study, Sax and Kautz (2003) found that teachers were the first to recognize the symptoms of ADHD in children, followed by parents and primary care family physicians.

Additionally, parents stated that they experienced feelings of sadness, fear/anxiety and lack of acceptance when their children were diagnosed with ADHD, and some of them stated that they were able to normalize the situation as a result of the explanation given by the doctor when they were diagnosed. These findings obtained in the study also coincide with the findings in the literature. In a number of studies, it was found that parents had difficulties in accepting the diagnosis of ADHD (Pimentel et al., 2011; Whittingham, 2014) or that they experienced relief and normalized the situation after the diagnosis (Corcoran et al., 2017), and that they started to view their experiences positively (Maniadaki et al., 2007). Similarly, in the present study, some parents may have tended to normalize the situation and attribute positive meanings to their experiences by focusing on the positive aspects of the diagnosis in order to avoid the negative emotions it brought as it was seen that the parents who normalized the situation stated that it was not desperate. It is also noteworthy that the parents were most concerned about the side effects of medication and negative information online. On the other hand, some parents stated that they were concerned their children would fall behind their peers and that they did not have enough information about ADHD.

When the opinions of parents regarding the social relationships of children with ADHD were examined, it was seen that children with ADHD were excluded by their peers, experienced conflict with their peers and could not establish social relationships. Disruption in peer relationships is a prominent feature associated with ADHD (Mikami & Normand, 2015). In this regard, it has been revealed that children with ADHD experience peer rejection, conflictual relationships with peers and feelings of loneliness (Maya Beristain & Wiener, 2020), and that they experience more peer rejection than their typically developing peers (Thorell et al., 2017). Parents in the study stated that their children with ADHD were not only excluded by their peers but also by their teachers. The student’s social emotional characteristics, participation in learning and classroom activities, and academic performance have a significant impact on the teacher-student relationship (Nurmi, 2012). When students exhibit challenging behaviors in the classroom, it can pose difficulties for teachers, as they need to rein in disruptive behaviors as part of classroom management; thus, challenging behaviors may receive negative reactions from teachers. The fact that the underlying symptoms of ADHD often result in difficulties in social functioning and academic difficulties is thought to lead teachers to have negative attitudes towards children with ADHD. Children with ADHD were found to have higher levels of conflict and lower emotional closeness in their relationships with their teachers compared to typically developing children (Ewe, 2019).

Another finding of the study in relation to how ADHD symptoms influenced family members was that some of the parents mentioned that ADHD symptoms triggered conflicts between siblings, conflicts with parents and conflicts between spouses, thus raising unrest in the family. According to some parents’ views, behaviors such as impatience, hyperactivity, irritability, inability to focus on lessons, aggressiveness/violence, and stubbornness cause their children with ADHD to experience conflict with their siblings and parents. In addition, the parents stated that conflict between spouses arose from the fact that the mother usually took care of the child with ADHD and the father did not support the mother. According to the traditional gender roles in Turkish society, it is regarded as the responsibility of the mother to care for the child. It is possible that this traditional approach may be effective in increasing the care burden of mothers and causing them to experience more parenting stress. Some parents stated that the child’s ADHD symptoms had a negative psychological impact on them and that they received psychiatric treatment for this reason. In parallel with these findings, various studies have revealed that parents of children with ADHD experience more parental stress (Wiener et al., 2016), more stress in their families (Theule et al., 2013), and higher levels of parental psychopathology than parents of typically developing children (Muñoz-Silva et al., 2017). In a study conducted by Wymbs et al. (2008), it was found that frequent and unresolved spousal conflicts were common in families of children with ADHD. Having a child with ADHD predicts marital quality and parental depression through parenting stress (Ding et al., 2022). The fact that both parents share the responsibility of caring for the child with ADHD shows a protective effect against parental depression (Lu et al., 2024). It is suggested that living with a child with ADHD affects the relationship of parents and that parents tend to disagree in their attitudes and behaviors towards the child, which results in conflict (Laugesen & Groenkjaer, 2015).

Children’s ADHD symptomatology places significant demands on parents in particular and leads to high levels of parenting stress. These in turn can affect couple relationships, increase the risk of inter-parental conflict and have a negative impact on the family climate (Schirl et al., 2022). In the present study, parents also stated that in addition to intra-familial conflicts, they experience conflicts with people in their social environment due to the child’s behavior, and that other people do not accept their children’s behaviors, react negatively, and they experience difficulties in social environments. It is suggested that these social experiences of the parents may be related to the social stigma of ADHD, as similar to the present study, in a study conducted by Mofokeng and van der Wath (2017), it was stated that parents experience rejection and stigmatization by family and community members as a result of their children’s destructive behaviors.

The findings of the study reveal important information about the experiences of Turkish parents of children with ADHD regarding the diagnosis process, their emotional reactions to the diagnosis, their experiences regarding their children’s social relationships, and the impact of ADHD on both the family and child. The results obtained in the study are thought to contribute to intervention studies designed to support children with ADHD and their families and to provide a family environment that will support the children’s development and facilitate their adaptation to intervention. It has been revealed that the stress of parents with ADHD children increases the symptoms of ADHD and this in turn increases psychological maladjustment in children (Breaux & Harvey, 2019). In this context, it is of great importance that the life experiences of families are determined in order to plan effective and individualized interventions and treatment processes for each child with ADHD. When the literature was examined, two qualitative studies were found that examined the life experiences of Turkish families with children with ADHD. However, in one of these studies, only the difficulties experienced by children in educational settings were addressed (Cesur & Akyol, 2019), while the other only focused on the experiences of managing the process (Ay & Doğan, 2021). In studies conducted in different countries, parents’ experiences of health services (Laugesen et al., 2017), their perceptions of the child (Al-Mohsin et al., 2020), barriers to caregiving and psychological effects of the diagnosis process (Carol et al., 2011) were examined. Furthermore, no qualitative studies have been conducted in either Turkey or other countries in which the life experiences of parents in terms of the diagnostic process, social relationships, academic skills, and family functioning of having a child diagnosed with combined type ADHD have been addressed through a holistic approach. In this context, it is thought that this study emphasises the importance of understanding parents’ process of making sense of ADHD diagnosis and can provide important insights to mental health specialists, and other related professions such as bio-statisticians, teachers and child developmentalists in interventions developed to support parents in coping with their children’s challenging behaviors in daily life.

Limitations

Despite its importance, the study also has some limitations. The life experiences of parents regarding having a child with ADHD were limited to the views of 13 parents. In addition, in the selection of the interviewees, the focus was on whether they were directly related to the research topic rather than their ability to represent the population. Due to the nature of qualitative research, cause-and-effect relationships cannot be established between variables and research results cannot be generalized to different samples. In this respect, it is recommended that mixed-method studies be conducted in future studies. Another limitation is that only the experiences of parents with children diagnosed with combined type ADHD were examined in the study. It is recommended that the life experiences of parents with children diagnosed with other subtypes of ADHD or other comorbid conditions are examined as well. In future studies, in addition to the life experiences of parents, examining the life experiences of children with ADHD would also contribute significantly to intervention studies. Finally, a major limitation of the study is that it included only one female child with ADHD. The main reason for this is that the study only included the combined subtype of ADHD, which is more commonly diagnosed in boys. However, it should be emphasised that the region where the data were collected is a metropolitan province and the hospital where the data were collected is one of the largest city hospitals in Turkey. Even in this hospital, the number of female children with combined type was still very limited and only one case was available who volunteered to participate in the study. In future studies, it is of great importance that studies examining the life experiences of parents with female children with ADHD are conducted in order to prepare support programs for this group.

Implications for practice

In line with the results of the research, some suggestions for practice can be offered to mental health professionals and other related specialists.

  • Parents’ psychological well-being and a positive family environment are crucial for the success of intervention programs for children with ADHD. In this context, specialists should first assess parental stress, incorporate the findings into individualized care planning and interventions specific to each family and implement them accordingly. Focusing on improving parenting styles in interventions may improve the quality of life of families with children with ADHD. One of the specific findings of the study was that parents were concerned about their children’s use of medication. During the interviews, it was noted that there was a great need for interventions to support parents to inform them about the possible effects of medication. It is thought that addressing this issue in interventions may also be effective in reducing parents’ stress.

  • In the study, the participants stated that the fact that mothers are largely responsible for children with ADHD increases the mother’s burnout, leading to inter-partner conflict and parent-child conflict. Since parent-child relationships play an important role in children’s development and adjustment, these findings suggest that interventions involving the fathers as well as mothers of children with ADHD and comorbid behavioral problems are needed to support effective child behavior management strategies that will reduce parent-child conflict and increase the level of positive parent-child interactions.

  • Inclusive teacher attitudes are very important for positive school experiences and peer relationships in children with ADHD. In order to support teachers in managing ADHD symptoms in the school environment, it is important that psycho-social support practices are included in the planning, not only for parents but also for teachers. Furthermore, teacher training in Turkey does not provide adequate training on inclusion and, in particular, the inclusion of children with ADHD. As teachers do not have the necessary knowledge on how to deal with ADHD symptoms in the classroom, they may have attitudes towards excluding these children, as reported by parents in the study. In this context, the inclusion of teachers in intervention programmes or the implementation of independent interventions for teachers may increase the inclusion of children with ADHD in the classroom environment and may be effective in reducing the exclusion experienced by children at school.

  • Relationships with peers are a persistent and treatment-resistant area for the population of children with ADHD. Interventions that combine approaches targeted at the challenging behaviors of children with ADHD with approaches aimed at increasing the inclusiveness of the peer group may significantly improve social functioning in ADHD populations. In addition, intervention programs designed to improve the social skills of children with ADHD and their parents, such as conflict resolution and peer group inclusion, may be effective in improving children’s peer relationships.

  • Finally, in Turkey, the medical diagnosis and treatment of children with ADHD is carried out by child-adolescent psychiatry specialists in psychiatric clinics, and there is no other specialty related to developmental disorders in the diagnosis process. In the Turkish health system, medical and educational diagnostic processes are disconnected from each other. Therefore, mental health specialists do not provide any consultancy services to education specialists about children. Psychiatric assessments of families and children in hospitals are not taken into account in other stages of the intervention process involving special education and school. In addition, schools often lack mental health and special education specialists. Considering that teachers generally lack knowledge about ADHD symptoms and how they can affect children’s social and academic functioning, there is a significant need for mental health and special education specialists to provide counseling and information for educators as well as follow-up studies for children and families.

Conclusion

ADHD negatively affects family functionality and parents; however, no studies have examined the experiences of Turkish families with children diagnosed with ADHD. The present study provides an in-depth overview of the life experiences of parents with children with combined type ADHD. In general, the results reveal that families experience various challenges and emotional difficulties in the diagnostic process, social relationships and domestic issues, and in the academic field. The results obtained may shed light on how parents make sense of their life experiences, especially for mental health professionals and related professionals in clinical and educational settings. In line with the results, it is thought that it is essential for specialists to include findings related to parents’ life experiences in the treatment planning of children with ADHD and to develop parent-oriented intervention programs.

Appendix 1

Questions asked in the interview

  1. 1.

    “Could you tell us about your experience of having your child diagnosed with attention deficit hyperactivity disorder?“

  2. 2.

    “Do you think that your child’s attention deficit hyperactivity disorder affects your life/lifestyle? If you think it does, how does it affect you? Why?“

  3. 3.

    “Does your child’s attention deficit hyperactivity disorder affect your family relationships? If so, how does it affect them?“

  4. 4.

    “What is your experience of your child’s relationships with peers?

  5. 5.

    “What do you think about your child’s relationship with his/her siblings?

  6. 6.

    “What are your experiences with your child’s social environment?

  7. 7.

    “What are your experiences with your child’s education and development?

Appendix 2

The saturation of the sub-themes

Main themes

Sub-themes

n

Participants

Experiences in the diagnosis process

Teacher’s guidance

5

P1, P2, P5, P7, P8

Parents’ awareness

5

P4, P6, P9, P10, P12

Guidance of people in the social circle

2

P3, P13

Recognition by the family physician

1

P11

Emotional reactions related to the diagnosis

Normalization

6

P1, P8, P7, P11, P12, P13

Sadness

5

P2, P3, P5, P6, P9

Inadmissibility

3

P3, P5, P9

Fear/Anxiety

3

P4, P7, P10

Experiences related to social relationships

Exclusion

7

P3, P5, P6, P9, P10, P11, P12

Conflict with peers

7

P2, P3, P6, P7, P8, P9, P11

Inability to establish social relations

3

P1, P5, P6

Reflections of ADHD diagnosis on the family

Domestic unrest

12

P1, P2, P3, P4, P5, P6, P7, P8, P10, P11, P12, P13

Difficulties in social environments

9

P2, P3, P4, P5, P6, P7, P8, P10, P11

Psychological effects on parents

7

P3, P4, P5, P6, P7, P9, P10

Academic difficulties

Inability to focus

6

P1, P4, P5, P6, P7, P8

Mobility during the class

5

P3, P6, P9, P10, P11

Difficulty with verbal lessons

2

P1, P6