Introduction
Disclosure is the act of sharing new or previously secret information with others through verbal communication, and it is a complex and multifaceted process, especially when stigma is involved [1]. Identities are stigmatised if they are perceived as a mark of shame or failure, tainting the individual in the eyes of society [2]. An identity that incurs stigma but that can be kept from others (e.g., mental health diagnosis, domestic violence) is referred to as a concealable stigmatised identity [3]. Depending on the circumstances, disclosure of a concealable stigmatised identity can bring about benefits such as increased social support, treatment access, and empowerment [4, 5]. However, disclosure can also elicit adverse reactions from others, leading to consequences such as rejection and social ostracism [5, 6]. Thus, some people might prefer not to disclose their stigmatised identity, although this too has ramifications; for example, concealment often comes at the cost of increased stress and not being able to access support [6]. Weighing the costs and benefits of disclosure ultimately informs a person’s disclosure decisions [7].
The decision to disclose personal information is further complicated for parents or other primary caregivers (referred to throughout as ‘parents’) of children with potentially stigmatising conditions (such as some physical or mental health problems, neurodevelopmental conditions), as the information is primarily about their child (not self). Communication privacy management (CPM) theory states that individuals own and control their private information [8, 9]. Given that parents are responsible for the upbringing of their children in the eyes of the law and society, CPM theory assumes that parents take ownership of their child’s private information. Thus, it becomes the parents’ responsibility to disclose (or conceal) their child’s private information, such as a health condition, to others [10]. In making disclosure decisions on behalf of their children, parents must manage both their own privacy boundaries and dyadic-privacy boundaries, which inevitably makes the decision-making process more complex [11].
Parents not only have to consider the impact that their disclosure decisions will directly have on their child, but also on their future relationship with their child (e.g., how their child will feel about their parent’s choice when they are older), and the broader family [4]. Concerns about stigma due to the child’s health condition can also impact on parents, as they can be stigmatised in their own right [12]. For example, parents of a child with a mental health disorder can be stigmatised in two ways: (1) indirectly because of their close, familial relationship with their stigmatised child (referred to as courtesy stigma) [13, 14], and (2) directly by being perceived as a “bad parent” due to being blamed for their child’s behaviour or mental health problems [15, 16]. Furthermore, disclosure can be difficult to modify or retract once it has been made [17]. Thus, parents’ decisions to disclose can be influenced not only by the anticipated stigma towards their child but also towards themselves. Perhaps due to these complexities and the varied and uncertain ramifications, many parents find the disclosure decision-making process difficult, contributing to their stress, worry and caregiver burden [5, 14, 18].
Previous research has shown that, for parents of children with neurodevelopmental conditions and mental health disorders, disclosure decisions are nuanced. Parents are influenced by experiences and expectations of stigma in different ways, describing concealing information about their child to avoid stigma in some situations yet disclosing information in others to actively defend against it, thereby engaging in “selective disclosure” [5, 14]. More broadly, a recent systematic review and qualitative meta-synthesis of 20 studies about parental disclosure of childhood physical and mental health disorders [19], found that parents mainly made disclosure decisions based on how this would likely best manage stigma towards their child, protect their child’s privacy, help them advocate for their child, and facilitate social support for their child and themselves. Furthermore, parents who chose to disclose their child’s condition to others did so based on their existing relationship with the other person, adapted the content of their disclosure to suit the context, and often planned how to disclose [19]. In all, findings indicate that when making disclosure decisions on behalf of their children, parents carefully weigh up the pros and cons of disclosing in each context, primarily with their child’s best interests in mind, and if they decide to share information, then they adapt their disclosures based on the needs of each situation.
The above-reviewed research focuses on parents’ disclosure decisions regarding a range of stigmatised mental health and neurodevelopmental conditions [19]. Although this review found many similarities throughout parents’ disclosure concerns, it is possible that there are additional disclosure concerns for conditions in which a child’s behaviour is affected. This is because (unlike in physical health conditions) parents are seen as responsible for shaping their child’s behaviour; hence, parents are seen as responsible (in part or fully) for the condition itself. A prominent example of a condition where the child’s behaviour is affected is attention deficit/hyperactivity disorder (ADHD).
ADHD is one of the most common childhood neurodevelopmental disorders, with prevalence estimated at around 5% [20, 21] and is characterised by marked and developmentally inappropriate levels of inattention and/or hyperactivity-impulsivity. Some ADHD symptoms are visible; thus, children are more likely to be noticed as ‘misbehaving’ [22]. Other aspects of ADHD might also impact on disclosure concerns and experiences for parents. For example, compared to other childhood disorders (e.g., anxiety, depression), ADHD symptoms are more enduring rather than episodic and ‘treatable’. Moreover, medication for ADHD is highly stigmatised and yet is a relatively common part of symptom management [23]. As an example, in the United States, 62% of children diagnosed with ADHD had received pharmacological treatment [24], compared to 38% of children with anxiety and/or depression [25]. Furthermore, parents’ disclosure might be impacted by perceptions that ADHD is a more “controversial” disorder than other childhood disorders or conditions due to two specific factors: (1) perceptions of the ambiguity of ADHD symptoms—children with ADHD can often be perceived as simply being “naughty” or poorly-behaved, and (2) the value-judgments individuals hold about medication use as part of ADHD management [16, 26]. In some instances, the use of medication can be perceived as the parents simply being “lazy” [14]. These societal perceptions, as well as the specific characteristics of ADHD mentioned above, may influence parents’ disclosure decision-making, experiences, and/or support needs in ways which are specific to parents of a child with this neurodevelopmental condition.
Despite the high prevalence of ADHD in children, the importance of parental disclosure decision-making on treatment and support access, and the range of additional considerations for this parent population, no study has yet examined how parents of children with ADHD make disclosure decisions about their child’s diagnosis specifically, nor about medication use. However, there are some studies that have explored disclosure decision making more generally in this population. One study exploring courtesy stigma management in families of adolescents (12–16 years) diagnosed with ADHD found that parents who disclosed their child’s diagnosis often experienced increased social support, particularly if they became part of groups that had knowledge of and accepted ADHD [22]. However, this study also found that parents’ interactions with others in their community could also increase stigmatising experiences through mandated disclosure and social exposure. Furthermore, some parents chose to conceal their child’s diagnosis when they perceived that individuals in their social network were unfamiliar with ADHD, as they anticipated receiving unsolicited and uneducated parenting advice from these individuals. They interpreted this advice as evidence that they were “failing” at parenting, and therefore chose not to disclose to avoid these exchanges.
Another study looking at parents’ social experiences of having a child (7–12 years old) diagnosed with ADHD more generally also found that parents reported a pervasive lack of understanding of ADHD in their communities [27]. They described that they and their children often faced judgement and discrimination; for example, ADHD was perceived as not being “real” but rather an excuse for inadequate parenting. Due to these stigmatising experiences, parents subsequently opted to socially withdraw and conceal their child’s diagnosis or actively explain their child’s behaviour and educate others about ADHD. Although these two behaviours might seem opposing, the underlying reason appears to be the same: to manage ADHD-related stigma towards their child and themselves. Although neither study specifically aimed to examine parental disclosure of ADHD or ADHD medication, these findings highlight that disclosure is an issue that these parents frequently contend with.
It is important to note that most of the research described above is situated within a medical/deficit-based model of ADHD. In recent years, there has been an increase in neurodiversity discourse [28], which views ADHD (and other neurodevelopmental conditions) as a valuable part of human variation, rather than as pathological [29, 30]. This view can be empowering for individuals with these conditions and the people in their life (e.g., parents) in part because it actively challenges the existing stigma [31]. However, many people continue to hold stigmatising views of ADHD, and parents of children with ADHD are still likely to come across judgement and discrimination as a result.
In sum, there is ample evidence that disclosure decisions about a child’s ADHD are largely the responsibility of parents, are difficult to make, and involve many factors that affect both parents and children. However, there is a gap in the knowledge available regarding the specific considerations parents of children with ADHD make when faced with these decisions, particularly with regards to medication. Thus, the aim of the current study was to explore parents’ decision-making about disclosing or concealing their child’s ADHD diagnosis and medication (as applicable). Specifically, we aimed to understand what factors parents consider when making disclosure decisions, regardless of whether their decision results in disclosure or concealment. This information is crucial in developing effective, sensitive, and respectful disclosure support for parents of a child with ADHD. We designed the study to be qualitative, in keeping with what others suggested was needed in the area of disclosure research [32], using reflexive thematic analysis to analyse the data, as this would allow us to capture the complexity and nuance of parents’ lived experience. The children’s age range (5–11 years old) was chosen because most children with ADHD are diagnosed during the primary school years [33]. Further, children in high school (over approximately 12 years) begin to take greater ownership of their personal information and the parents’ role in disclosure decisions is diminished [9, 10].
Method
Study Design
We conducted qualitative semi-structured interviews from June 2021 to April 2022. The study protocol was approved by the University of Western Australia Ethics Committee (2021/ET000025).
Parent Reference Group
A parent reference group (PRG) of three mothers was formed to assist with creating and advising on the semi-structured interview schedule. These parents were recruited through an ADHD support organization. Consultation with the PRG aimed to ensure the interview questions were appropriate, respectful, easy to understand, and relevant to the parents’ experiences [34, 35]. The PRG agreed with the importance of the study and overall appropriateness of the interviews. Their feedback centred around enhancing the interview structure, question clarity, and practicalities. From this consultation, minor wording changes were made to the interview questions (e.g., using “talking with others” instead of “disclosure”, and “disadvantages” instead of “cons”). Parents in the PRG also preferred that the questions simply state “ADHD” and refrained from using the word “disorder”, in line with a neurodiversity lens.
Participants
Fifteen parents (10 mothers, 5 fathers) of children aged 5–11 years who had been diagnosed with ADHD by a qualified health professional were recruited in Western Australia. Demographic characteristics of the parents and their children are shown in Table 1. All parents included in the study were biological parents. All the children were taking medication for ADHD at the time the interviews were conducted. Recruitment occurred online through a local ADHD information and support group who distributed information about the study via their members’ email list, through their social media platforms (Facebook and Instagram) and advertised on their website. Additionally, digital study flyers were shared via the social media platforms (Facebook, Twitter, and Instagram) of the host institutions.
Table 1
Demographic characteristics of the interviewed parents and their children
Characteristics | Parents | Children |
|---|---|---|
Age in years, M (range) | 42.2 (32–50) | 8.93 (7–11) |
Education, n (%) | ||
High school diploma or equivalent | 1 (7%) | |
Some undergraduate education | 1 (7%) | |
Undergraduate degree (e.g., BA, BSc) | 8 (53%) | |
Some postgraduate education | 2 (13%) | |
Postgraduate degree (e.g., Masters, PhD) | 3 (20%) | |
Months since diagnosis, M (range) | 24.8 (9–45) | |
Diagnosing professional(s), n (%) | ||
Paediatrician | 13 (68%) | |
Psychologist | 5 (26%) | |
Psychiatrist | 1 (5%) | |
Additional diagnoses, n (%) | 8 (53%) | |
Autism spectrum disorder | 3 (20%) | |
Anxiety | 2 (13%) | |
Sensory processing disorder | 2 (13%) | |
Other | 3 (20%) |
Procedure
After clicking on the advertisement, all parents provided informed consent digitally and completed a short online screening survey to confirm eligibility. If they met inclusion criteria (i.e., over 18 years old, parent of a child diagnosed with ADHD aged 5–11), they went on to answer demographic questions about themselves and their child (e.g., age, gender). If the parent had more than one child with a diagnosis of ADHD within the age range of the study, we asked them to focus on the eldest child.
Interviews were conducted by the first author, and most (n=13) were completed via videoconference, with two conducted face-to-face. Interviews lasted from 21 to 57 minutes (M=31.5 min). Participants were remunerated for their time. Some of the questions asked in the interview include: “Have you shared your child’s ADHD diagnosis with other people in your/your child’s life? Who have you shared it with? Why did you share it with them? How did this go?” If medication for ADHD management was being taken, we followed up to understand disclosure decisions related to medication specifically. Each question included several prompts to encourage participants to elaborate (please see Supplemental Material for full interview schedule). All interviews were audio recorded and later transcribed verbatim. The first author checked all transcriptions against the interview audio recordings for accuracy prior to data analysis.
In keeping with the latest recommendations for reflexive thematic analysis study design principles, recruitment continued until sufficient information power was reached [36]. This approach invites the researchers to iteratively reflect on the richness of the information in the dataset, and how that aligns with the aims of the study and requirements of the research questions we set out to answer [36, 37]. The more information relevant to the research question that a sample holds (e.g., through a thorough interview with a defined research question), the lower number of participants is needed. The first and last authors (IMA and JO) met after n=6 interviews had been conducted to discuss the richness of the data and noted the very high overlap between the interviews. We met again after n=9 (8 mothers and 1 father), at which point, given the consistency of the information shared by mothers (and one father), further recruitment efforts focused on fathers, aiming to capture any potential differences in the experience between the parent genders. However, after conducting six additional interviews (4 fathers and 2 mothers), we failed to find these differences. We then stopped recruitment given that 1) our initial aim was to exceed n=12, as this has been indicated by previous studies about sample size in qualitative research to be the point at which themes rarely shift in their construction [38], 2) growing recommendations suggest pragmatics should outweigh a thematic saturation approach [37], and 3) the research team agreed that sufficient information power had been reached.
Data Analysis
Data was primarily analysed by the first author (IMA), a female clinical psychology trainee who has clinical and research experience working with parents of children with neurodevelopmental disorders. The second and third authors (YP and JO) are clinical psychologists and academics with experience working with children and young people with mental health conditions and neurodevelopmental disorders, and their families. JO and YP are also mothers, with a child in the study’s age range. Given our background in clinical psychology, as well as our research interests, we tend to have a neurodiversity-affirming approach to our work. Thus, we were mindful of the need to take a curious stance that did not assume disclosure was the more likely or desirable choice, and periodically returning to the data during the analysis process to ensure we were appropriately representing and balancing participants’ concealment and disclosure decisions and experiences.
Data analysis was completed using the software program NVivo (ver. 20). We used Braun and Clarke’s reflexive thematic analysis for data analysis [37], as this approach views the researchers’ contexts and experiences as a valuable resource in the analytic process. Thematic analysis is a qualitative research method for developing, analysing, and interpreting patterns across a data set. In reflexive thematic analysis, the practice of critical reflection on the role of the researcher(s), and the research practice and process is central to the analysis [37]. In keeping with best practice for reflexive thematic analysis, an iterative process was taken, moving back and forth through its six stages, as required. A reflexive journal was kept throughout the data analysis process. This process began with familiarisation (stage 1), where the first author (IMA) read through each of the transcripts making preliminary notes. Then, she conducted initial coding of the sections of the data which were relevant to the research question (stage 2). The final author (JO) also independently coded four of the same interview transcripts, to develop richer insights into the data by adding a different perspective to the first author’s coding [37]. Subsequently, the authors met on multiple occasions to discuss the developing analysis and collectively deepen our understanding of the data. Initial themes were generated by the first author (stage 3), using visual mapping to aid in their development and review. These preliminary themes were then reviewed by the first and final authors against the data tagged with code labels clustered in each theme (stage 4). Lastly, all authors contributed to the refining, defining, and naming of the final themes (stage 5). The final stage (stage 6) was the writing of the results, which are presented below. To ensure anonymity, identifying information was changed (including the use of pseudonyms) (see Table 2).
Table 2
Parent and child pseudonyms and basic demographic information
Parent pseudonym | Parent gender | Parent age (years) | Child pseudonym | Child gender | Child age (years) |
|---|---|---|---|---|---|
Anna | Female | 45 | Ben | Male | 9 |
Celia | Female | 45 | Dustin | Male | 9 |
Emma | Female | 40 | Finn | Male | 10 |
Gary | Male | 41 | Hayden | Male | 9 |
Isla | Female | 44 | Jim | Male | 10 |
Megan | Female | 32 | Luke | Male | 7 |
Mary | Female | 39 | Nadia | Female | 7 |
Amy | Female | 44 | Peter | Male | 8 |
Zoe | Female | 42 | Robert | Male | 9 |
Sally | Female | 41 | Tom | Male | 10 |
Vincent | Male | 46 | Aaron | Male | 7 |
Callum | Male | 37 | Eric | Male | 8 |
Will | Male | 46 | Scott | Male | 11 |
Grace | Female | 41 | Holly | Female | 10 |
Neil | Male | 50 | Oliver | Male | 10 |
Results
Five themes were generated. The first theme, i) consider who to tell, is often the first part of the disclosure process, with the four subsequent themes reflecting the different goals parents reported for disclosure situations, namely to: ii) benefit their child, iii) manage stigma, iv) access support and v) express identity. Parents considered whether their goal could be achieved through disclosing to a particular person (who they were telling).
All participants disclosed at least some of the time. The main groups of people that parents made disclosure decisions about were (1) the child’s school, (2) family members, (3) friends and (4) medical professionals. Medication use was disclosed less often than the ADHD diagnosis. However, the decision-making process for and themes relevant to medication disclosure followed the same pattern outlined above, except for in relation to “expressing identity”. This was because medication was (most often) not seen as part of their child’s identity in the same way as the ADHD diagnosis; thus, medication disclosure decisions are described alongside diagnosis disclosure decisions for the first four themes.
Consider Who to Tell
Parents reported that the first part of the decision-making process was assessing the person in the context of disclosure. In doing so, parents considered their pre-existing relationship (e.g., level of trust) and what they knew of the person more generally (e.g., opinions, views, and values), “I suppose I’ve chosen people who are more open, and less ‘judgey’, and those that I could trust” (Isla). Much of this assessment revolved around anticipating the other person’s reaction(s), with parents often choosing to conceal information if the anticipated reaction was negative, “we were a bit more cautious in telling my husband's family because they're a bit more old-school, a bit more likely to be judgmental” (Emma). Participants emphasised this aspect given that disclosure can’t be rescinded once it has been made, you cannot “untell” someone. Furthermore, parents considered the possibility that the other person could spread the information further, “I was always worried about if they would just disclose [Holly’s] information to other people, and I believe that’s her own journey” (Grace).
Parents also considered the level of need for the other person to know. For instance, people involved in looking after their child were seen as having a higher level of “need to know”, compared with people who were not involved in daily life with their child and/or family, “if you’re not involved with Ben day-to-day or weekly, you don’t need to know” (Anna). These considerations interacted with each other:
That will still come down to each individual parent having to assess the situation based on what they know of the person in front of them, on a scale of “don’t trust them, don’t need to know” to “trust them perfectly, must know”. Everybody sits in between there (Neil).
The decision to disclose medication was similarly considered, although most parents had shared information about medication with fewer people. Parents explained that, for the most part, this was because fewer people “needed to know” about medication, “there really hasn't been any need to discuss it with people, and very much comes back to that there’s no need for them to know because it didn't really affect anybody else” (Gary). Further, parents anticipated more negative reactions about medication than ADHD, “I’ll be a little more guarded about medication, I think there is definitely a lot of negativity around medication” (Celia).
However, parents expressed that if they deemed the other person “needed to know” (e.g., they were caring for their child), they would disclose the information, regardless of the other person’s views, “If they really need to know, they really need to know, so it doesn’t really matter what they think about […] medication” (Neil). Still, if the parent felt comfortable with the other person and did not anticipate negative judgement, they would sometimes disclose despite knowing the other person had different views on medication:
My good friend […] she has a kid recently diagnosed with inattentive […]. She is very – “No, I don’t wanna give her medication” kind of thing… and we talk about it, and I think we talked about it all last year. So, I got the support talking about it with her, but I also didn’t feel judged by her because she’s an old friend (Mary).
Benefit Their Child
Benefitting their child was generally the main driver in what information parents chose to disclose/conceal:
A lot of disclosures have been around healthcare professionals and things like that, and the school, and even my parents to a degree, that's about his [child’s] benefit, having other people understand why he might be slightly odd or behave a bit differently, and have them respond better to him rather than potentially being frustrated or angry with him, being a bit more flexible and compassionate (Gary).
This idea of benefitting their child was particularly evident in relation to deciding about disclosing to the child’s school. In sharing information with teachers and the broader school system, parents’ goals were most often to benefit their child’s learning, school experience, and academic performance, “When we told the school, it was to make sure that they were […] benefiting her the best they could at school by understanding what some barriers might be to her learning and behaviours” (Grace). This extended to other groups that their child might be involved in as well, such as sporting clubs, extracurricular activities, and holiday programs, and primarily focused on supporting others to understand that misbehaviours were often unintentional with the goal of the person being more patient, kind, and/or helpful to the child:
With karate and stuff, I guess we did tell them because she does have a really hard time focusing. She does muck around in class. […] So, I tell them so that they can be a bit more compassionate to her, but also correct her in a better way, knowing that she just can’t help it, but there’s a right way to – not a right way to correct her but like a kinder way to correct her (Mary).
Parents also considered the possible benefits of discussing their child’s medication with teachers, to adjust the treatment regimen to best fit their child:
The discussions with the teacher were more iterative to try and understand what works best for him, so we would tell them he’s on this amount now, how’s he looking, ok we’ve pumped it up to this amount, is that right, so there was constant feedback approach to understand if we’re getting the right application for him at school (Vincent).
However, if the parent felt that there would be no benefit to their child from somebody else knowing, or even that it might be detrimental to their child, parents chose to conceal, “So those are the people that we definitely, deliberately not tell them […] I would suspect that they would take any opportunity to use what they could… against him” (Neil). Parents carefully weighed up both the potential benefits and costs for their child first and foremost, when deciding whether to share information with others.
Manage Stigma
Parents discussed considering stigma – both stigma that they experienced and stigma that they anticipated. Deciding to disclose (or conceal) was done firstly considering the potential impact of stigma on the child, and secondly considering themselves. Stigma could be either direct (e.g., being perceived as “bad parents”) or indirect (e.g., as courtesy stigma due to being closely related to their child with ADHD). Parents often tried to manage information related to their child’s ADHD in a way that avoided stigmatising or “labelling” their child altogether. Concerns that their child would be judged negatively or discriminated against could lead them to conceal information about their child’s diagnosis:
So, one thing we were cautious about is telling those parents because we felt like if they told their kids about that… if my son’s playing and they [other children] knew about it and they had a fight they might use it against him, call him names ‘oh you have ADHD’ or something… (Callum).
Parents did not always conceal due to stigma; at times, parents disclosed to fight against stigma. They could disclose information about their child’s ADHD to increase visibility of the condition, promote acceptance, and/or decrease negative views and stereotypes about ADHD, “Just that acceptance of being different and having differences and just normalising that he’s got that, someone got this and that” (Sally).
Disclosing in the face of stigma often aimed to educate others and help to dispel stigmatising myths related to ADHD. However, parents simultaneously held in mind that sharing information might be detrimental for their child because of the current stigma:
I'm just a very open person and I think the more we talk about ADHD, the society will understand it, and so that was my process, but I realised that could be harmful for Peter as well, because once you get labelled something sometimes it's not that helpful (Amy).
Managing stigma was also a central goal in parents’ disclosure decisions regarding medication for ADHD. In general, parents were more hesitant to disclose medication information than the ADHD diagnosis because they perceived that medication is more stigmatised, possibly because having ADHD is not controllable (by the child or parent), whereas treating ADHD via medication is a choice the parent makes:
There’s a bigger fear of judgement, I think, when it comes to medicating. Whilst the child can’t help ADHD, there are choices about how you treat ADHD, so the medication is an active choice that we’ve taken and I think when you’re disclosing any choice that you’ve made, and a personal choice like that, there’s much more to fear, I think, of judgement, a fear of a reaction, that you never quite sure how it’s going to be taken (Will).
Much of the stigma around medication for ADHD appeared to target the parents themselves, and less so their child. This related back to medication being the parent’s choice and stigma about being “bad parents” for opting to use medication to manage their child’s ADHD:
I feel like people have a perception that even if you have ADHD that there are other ways to control it other than medication […] It's kind of a competition. I find parenting almost a bit competitive. […] And so, I feel like even with an ADHD diagnosis, that perhaps you lose points in the game of parenting if you have your child on medication… (Zoe).
Parents talked about their journey of learning about medication (e.g., potential benefits and risks) and felt that other people would not be as willing to educate themselves and challenge these societal myths, “I didn’t fully understand it until I read into it, and I doubt that any of the family will do that. So will just be like, ‘They’re just medicating the kid.’ And they won’t understand it” (Mary).
Access Support
Parents reported disclosing information about their child’s ADHD to individuals involved in their child’s life, so that they could provide better, more appropriate support for their child in a variety of contexts. Despite it not being directly included in the interview questions, parents discussed the lack of support they encountered in their journey towards their child being diagnosed and immediately after. Hence, actively seeking this support after the diagnosis was an important disclosure goal:
To get the support from them and they can be a little bit more tolerant with some of the behaviours that they [children] exhibit […] and can maybe communicate to them [children] in a way to help them get their [adult’s] message through, and that’s especially important for teachers (Vincent).
This change in how others interacted with the child could also support the parents, as they felt that their child would be looked after by someone with the knowledge and ability to respond to their child in an appropriate and compassionate way. This also applied to disclosing medication information, as others (e.g., family members, teachers) could practically support parents in administering the medication to their child and monitoring effects:
The school knows, mainly because obviously we’ve trialled it at school, so they were short-acting that he needed to take it and they needed to give it to him halfway through the day. And then we had to change medications, so we needed the school’s input of how his behaviour was at school (Isla).
Parents explained that they had disclosed information about their child’s ADHD to access social support for themselves. This was described as a crucial part of the “journey” of having a child with ADHD:
I think your network builds by sharing and you need that. You need that to support, and you learn, like it’s a continual learning of all of my journey. […] I think if you’re not gonna tell anyone, look at us and think if we didn’t tell anyone, we wouldn’t have the network we do now (Anna).
Accessing social support by disclosing helped parents feel less alone, and fuelled connections with other parents going through similar situations:
That sharing those led to… just knowing that you are not the only one, that’s really important… you know a few parents that I’ve talked to at school and then you’re quite surprised when they tell you that their child was diagnosed as well, it’s nice knowing that you are not the only one, you are not alone, that’s important (Celia).
Parents valued sharing knowledge about ADHD and medication with other parents of children with ADHD. These positive connections helped them manage their parenting stress, particularly in the time immediately following diagnosis, where parents felt the lack of support was most pronounced:
Sometimes I would do it to alleviate my stress as a parent, and other times, I would do it more strategically for Tom’s benefit. So early on, it was more about me dealing with my parenting stress […] He’s being treated, he’s seeing a paediatrician, we have services helping us now, whereas before, we didn’t have that. I was just taking support wherever I could find it (Sally).
When parents felt well-supported and empowered, this reduced their parenting stress. They were also more likely to be confident in sharing information about ADHD with others despite any anticipated stigma, but conversely often felt less need to share this information widely:
I think now I’ve learned that the more confident I am in the decisions we’ve made, the easier it is to tell people because… yeah I’ve just found the more information I have, the easier I can speak about it and… yeah just have a lot more confidence in telling people that need to know or being really open about discussing it (Megan).
Later on in their journey, parents used disclosure to provide support to other parents and children, rather than to seek it out for themselves:
But when I hear another parent talk about difficulties that they’re having with their child that sounds like ADHD, and then I might share it and talk about things that we found helpful and go, just to share with other parents, “These things are real. You're not alone,” that sort of thing (Sally).
Express Identity
Parents referred to their child’s ADHD as being “just who they are”, with some describing that ADHD was an integral part of their child’s identity, “…it’s as much a part of his identity as what his favourite colour is, and what he likes to do at the weekends” (Will).
Parents commented that they often tried to model being open about ADHD, so that their child knew it was not something shameful that needed to be hidden from others. They hoped this would give their child the freedom to share information about their ADHD with others (if they chose to), and an increased understanding of themselves:
For my son, just so that it gives him an understanding as well, if it’s sort of something that is fairly open and he can talk about, we don’t have to keep it a big secret from everybody, like if I told him he can’t tell anybody or not tell anybody, that’s his choice… (Celia).
Parents thought that this contributed to their child’s self-esteem, as they were expressing that their child did not need to be ashamed of their diagnosis, but rather it is part of neurodiversity (e.g., a “different kind of brain”). Additionally, other people knowing about their child’s ADHD and how to best support them often decreased the volume of negative feedback that their child received, furthering the benefits to their self-esteem:
Since we’ve had all these things in place to help him and we know why he is the way he is and we’ve got these coping mechanisms, he’s not being told “no!” all the time, he’s not being told that “he’s not doing it right” or to “listen better”, he’s not getting that negative feedback constantly. So, I think that in turn his self-esteem has really come along a lot since the start of this year, since we’ve had those things in place to help him to understand and to help others understand him as well (Megan).
Some parents talked about a strengths-based approach to ADHD, explaining that this helped to capture ADHD as a feature of their child’s identity rather than a fault:
I think it helps the child get into a stance of accepting that they have neurodiversity and there’s strengths and challenges in that rather than viewing it as a defect that they have to spend the rest of their life making up for (Emma).
By presenting ADHD as part of their child’s identity, and something they could be proud of, this also served to push back against stigma.
Lastly, while expressing identity was a prominent goal in parents’ disclosure decisions regarding ADHD diagnosis information, the same was not true for medication information. As discussed in the “Manage Stigma” theme, this was because while ADHD could be shared as part of their child’s identity (e.g., it’s not their choice, it’s who they are), medication could not. As medication was instead an active choice (usually made by the parents), it therefore did not have the same protection that identity (and proud ownership of that identity) had against stigma. While the results of this study have been organised into distinct themes that depict parents’ disclosure goals, these goals often intersect in practice, reflecting the complexity of real-life decision-making.
Discussion
The current study aimed to enhance our understanding of how parents make disclosure decisions about their child’s ADHD and medication. All parents described disclosing to at least some people some of the time, with a few parents describing being open about the child’s diagnosis most of the time. There was more hesitancy about sharing information about the child’s medication than diagnosis. Parents’ decision-making process started with evaluating the person with whom they are considering sharing the information (most often their child’s school, their families, friends, and medical professionals). After this, parents considered their goals in disclosing their child’s ADHD diagnosis, which included themes of benefitting the child, managing stigma (towards the child and/or parent), accessing support, and enabling the child to see ADHD as part of their identity. The same goals applied in making disclosure decisions about ADHD as about medication except expressing identity, which centred on seeing ADHD as part of who the child is.
In deciding about who to tell, parents heavily weighed up their trust in the person and their pre-existing relationship with them (including what they knew about their opinions/views), with the degree to which the person needed to know information about their child’s diagnosis and treatment. When parents chose to disclose, the valence of their experiences (i.e., positive or negative) mostly depended on the other person’s level of (mis)understanding of ADHD, and their (in)ability to provide support, which could be practical (e.g., a teacher’s accommodations in the child’s classroom) or emotional (e.g., a friend’s social support for the parent). Many parents perceived generational differences in others regarding stigma and misconceptions (e.g., referring to the child’s grandparents as “old school” and having “outdated views” of ADHD), which made it less likely that the parent would disclose. While other studies have reported some similar ideas with regards to parents considering others’ views and their anticipated reactions [14, 27], the more nuanced considerations about providing support, “need-to-know” and trust/pre-existing relationship with others had not been directly explored in the ADHD parent population before.
Parents described multiple goals in disclosing information about ADHD or medication. First and foremost was a strong desire to benefit their child with the disclosure decisions they made, putting the child’s best interests first, as has been shown previously [19, 39]. The parent’s desire to access support was key in disclosing. Parents’ first and primary desire was to access support for their child, especially to enable their success at school. This affected both the diagnosis (for example, receiving learning accommodations at school could often only be done via providing a diagnosis) and medication (for example, receiving input from teachers on medication effectiveness and side effects). However, parents also sought to share information to seek social support from others, whether that was informally (e.g., being able to talk openly with a friend) or formally (e.g., accessing support associations). This result is consistent with previous studies, both ADHD-specific and those exploring other stigmatised conditions, as support access (e.g., treatment, accommodations) is often a reason for parents’ disclosure, and has been seen as a major driver for seeking a diagnosis in the first place [1, 14].
Our findings are also consistent with previous studies in that they reflect parents’ hesitancies to disclose their child’s ADHD diagnosis when they perceived stigma was a risk. This perceived risk could be due to others’ limited understandings, or outright negative views, of ADHD [22]. Parents in our study described ADHD as a “misunderstood” condition, with both their community and society at large as lacking knowledge of its characteristics, impacts and treatment. This finding is consistent with existing ADHD research [27, 39], despite our study occurring 10–15 years later. However, parents in our study also explained that stigma did not always lead them to conceal information about their child’s ADHD; rather, sometimes a desire to combat stigma led them to disclosure. Regardless of the conceal/disclose decision, however, both stemmed from the same goal – to manage stigma. This is consistent with previous findings in ADHD research specifically [27], and in parental disclosure of physical and mental health, and neurodevelopmental conditions more broadly [14, 19].
The use of medication as part of managing ADHD symptoms contributed to anticipated stigma aimed directly at parents and influenced their disclosure decisions in ways that were different from other childhood conditions. For example, previous research has shown that caregivers of children with human immunodeficiency virus (HIV) hide the child’s medication and/or administer it in private [40]. Thus, medication use was seen as a normal “consequence” of having the condition and not itself stigmatised, rather, the secrecy around medication was related to concealing the HIV diagnosis [40]. In contrast, our results indicated that medication use for ADHD was seen as a “choice” that was stigmatised in its own right, parallel to the stigma related to the ADHD diagnosis. Thus, we found that parents sometimes had to make not one, but two disclosure decisions related to their child’s ADHD – one for the diagnosis, and another for medication use – which often resulted in contrasting outcomes (e.g., disclosing diagnosis whilst concealing medication).
The final theme described a goal of enabling the child to see ADHD as a part of their identity; it is who they are and there is not something ‘wrong’ with them – echoing a neurodiversity stance. This was a novel finding in the ADHD disclosure literature, specifically parental disclosure. The relatively recent change in the way some parts of society think about neurodevelopmental conditions might be why many of the parents alluded to a generational difference in the understanding of ADHD. By explaining to others that ADHD is part of their child’s identity, parents are also in part managing stigma by deferring control of the diagnosis away from the stigmatised individual (e.g., ADHD is nobody’s fault, and it isn’t wrong/bad, it’s who they are) [41]. However, this cannot help in managing stigma related to medication, since this is seen as an active choice, and therefore the parent is held responsible for it. As such, “expressing identity” was the only theme in which we did not see medication disclosure considerations, perhaps due to both of these facets – that is, ADHD (not medication) is part of neurodivergence, and ADHD (not medication) is outside the child’s (or the parent’s) control.
Our study has both strengths and weaknesses. Given the history of underrepresentation of male caregivers’ perspectives in the parenting literature, including on issues surrounding disclosure of a stigmatised condition [14, 42], one key strength of the current study is that one third (n=5) of the participants were fathers. In the past, parenting research has often been conducted primarily with mothers and assumed to apply to all parents. The present study did not find any differences in the disclosure lived experience between the mothers and fathers in our dataset. However, it is possible those differences exist, and therefore future research should continue to encourage male caregiver participation and actively engage in targeted recruitment for this purpose. As gender roles continue to shift in our society [43, 44], it is crucial that varied parental perspectives are examined in empirical research, including caregivers of all genders. Another main strength of our study was the examination of parental disclosure decisions about ADHD medication use in their own right, alongside disclosure decisions about the ADHD diagnosis. This was a consideration that was missing from the existing ADHD disclosure literature.
Our dataset was homogenous in some ways (e.g., all parents of a child with ADHD living in Western Australia, most had undergone tertiary education, all children were taking medication for their ADHD), and heterogeneous in other ways (e.g., only two of the children were girls, half of the dataset had children with additional diagnoses, 20% of which were autism). Half of the children in the dataset having additional diagnoses mirrors the estimates from populations around the world regarding comorbidities in children diagnosed with ADHD [45‐47]. Excluding participants whose children did/did not have additional diagnoses would have resulted in a dataset which captured a much narrower set of lived experiences and would have been more removed from the reality of the ADHD parent population. It could be argued that these differences in the dataset create concerns with regards to the “saturation” of study themes. However, the thematic saturation approach has increasingly been regarded as problematic in qualitative research, particularly for reflexive thematic analysis, when determining dataset size and composition [48, 49]. Instead, as suggested by experts in the field of reflexive thematic analysis, we aimed to capture “thicker” individual data items (through our interviews) which contained richer, more nuanced and detailed data, rather than “thinner” items with greater dataset breadth [37]. In planning our study design, we felt this approach was better suited to providing answers to our research questions.
Participants in our study were recruited through educational, research and ADHD advocacy organisations. As a result of these connections, it is possible that these parents have higher levels of support, acceptance and empowerment, and therefore their views might be different to parents who are not connected with these organisations or have less resources available [50, 51]. We aimed to reduce the effect of these differences by recruiting parents at different points in their journey (e.g., some had their child diagnosed as little as nine months ago, with others up to nearly 4 years ago). While we did not find meaningful differences in these parents’ accounts based on length of time since diagnosis, it is possible that being connected to one of these organisations still played a role in their experiences and views (e.g., the lack of complete concealment found in our dataset). However, others have noted that while complete concealment is theoretically possible, it would be difficult and impractical given the lengthy process families go through to obtain a diagnosis [14]. Further, we also note that obtaining a diagnosis of ADHD in Australia often involves waitlists of many months, and most often, years (Community Affairs References [52]. Hence, parents who received a “recent diagnosis” might have already had experience with disclosure decisions for quite some time.
The present study’s results suggest future research directions. Firstly, our study was conducted within the specific social context of Western Australia. We encourage researchers in other parts of the world to examine these questions in their cultural and healthcare contexts. These societal considerations play a significant role in stigma and support access, thereby likely impacting parents’ disclosure decisions in unique ways. Given the role that stigma continues to play in parents’ experiences, the language used by educators and clinicians at the point of diagnosis would also be worth exploring in relation to how it impacts the parents’ and children’s perceptions of ADHD and their sense of identity (as identified in the expressing identity theme). Future researchers could evaluate how using strengths-based, neurodiversity informed language, instead of deficit-based, disorder-focused language influences parents’ and children’s understanding of ADHD and willingness to disclose. Lastly, something that the PRG and a few parent participants mentioned was disclosure of the diagnosis to the child. Parents asked for guidance on how to help their children understand their diagnosis in age-appropriate and neuro-affirming ways. Resources for this purpose have previously been developed in collaboration with young people and their families, not only for ADHD but also autism [53, 54]. Given that the parents in our sample all reported a lack of support in making disclosure decisions about their child’s ADHD to others, a similar approach could be taken by future researchers in collaboratively developing disclosure-guidance resources to support parents through this decision-making process.
Conclusions
The results of this study highlight the importance of exploring and describing the disclosure decision-making process for parents of children with ADHD specifically – not only of disclosing the diagnosis, but also the use of ADHD medication where relevant. As we have seen, while these parents’ disclosure decisions shared some considerations with those of parents of children with other conditions (e.g., benefitting the child, accessing support), they also warranted some considerations which are more unique to ADHD (e.g., expressing identity, disclosure decisions regarding ADHD medication use). Stigma still plays a key role in parents’ disclosure decisions, despite an evident shift in parents’ beliefs compared to previous generations. A key contribution of the current study was the finding that medication use was consistently disclosed less often than the ADHD diagnosis, mostly due to stigma concerns. The distinction between ADHD being a part of the child’s identity (and therefore “protected” by the rising neurodiversity movement), and medication use seen as a “choice”, and therefore judged more harshly, was the main reason for this difference in disclosure outcomes. It would be valuable to continue monitoring the changes in society’s attitudes towards individuals with ADHD, and other neurodevelopmental conditions, as the neurodiversity movement inevitably expands. All participants in our study agreed that parents lacked support regarding disclosure/concealment decisions in the early stages of their journey, leading up to and directly following their child’s diagnosis. This offers an opportunity to for future research to evaluate how support could be provided for parents during this period, both in general, and specifically to help them navigate disclosure decisions early on, given their influence on outcomes for the child and family. Future research should also determine effective and efficient ways to fill this gap in support for parents of children diagnosed with ADHD.
Acknowledgements
The authors would like to acknowledge the invaluable contribution of all the parent participants in this study, without whom this research would not be possible. We would also like to acknowledge the assistance of ADHD WA in recruitment for this study and express our gratitude for their support of this project. Lastly, we would like to acknowledge the contribution of psychology honours students in transcribing four of the participant interviews for this study.
Declaration
Conflict of interest
The authors declare no competing interests.
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