Background
Attention-deficit/hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) are both neurodevelopmental disorders with an early childhood debut [
1]. Contrary to previous beliefs, recent research has shown that the majority of individuals with ADHD still meet diagnostic criteria in adulthood, affecting 2–4% of the adult population [
2‐
5]. For ASD the prevalence rate for adults is 1% [
6]. Although separate disorders ADHD and ASD often share certain cognitive impairments, such as problems with executive function [
7]. There is also a considerable overlap between them which has led to a joint conception known as ESSENCE (Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations) [
1] and to ASD and ADHD no longer being mutually exclusive in the
Diagnostic and Statistical Manual of Mental Disorders [
8].
Awareness about the persistence of symptoms in ADHD and ASD over the life span has increased the demand for treatment and support options specifically targeting the needs of adolescents and adults [
9‐
12]. Medication such as psychostimulants are regarded effective for adult ADHD but are not always sufficient and the number of controlled studies concerning stimulant medication for emerging adults is scarce [
13,
14]. Mounting evidence supports the use of multimodal treatment including psychoeducation and cognitive behavioural therapy [
15]. Several qualitative studies have shown that despite medication being helpful, adolescents and adults with ADHD in European countries and in the U.S. still report difficulties within several areas, and experience a strong need for psychological treatment or psychoeducation that is often unmet by healthcare [
16‐
18]. Importantly, there are no pharmacological treatments available for core symptoms in ASD, and research into support for the adult population is considerably lacking [
9]. Current recommendations include interventions such as cognitive behavioural therapy and social skills training [
19]. A qualitative study [
10] examining experiences reported by adults with ASD in the U.S. identified factors on several levels (patient/provider/system level) that negatively impacted the accessibility and experiences of received health care for this group.
More recently, interest has increased in coaching to aid individuals with ADHD [
20‐
22]. Coaching is a diverse field and a single operationalized definition is hard to find [
22,
23]. Target areas can include individualized support, encouragement and structure, psychoeducation; providing information about ADHD and the outcomes of living with it, as well as developing strategies to handle problems in everyday living [
22‐
25]. A limited number of studies, including a few qualitative ones, have specifically focused on coaching for adolescents and adults with ADHD [
24‐
27]. These previous studies are all important but also acknowledge methodological limitations such as narrow sample sizes and possible confounding variables. However, they show some initial support for the concept of coaching as helpful for individuals with ADHD. A qualitative study concerning the experiences of college students with ADHD also showed a preference for the term “coaching” and strategy-based interventions over ones including the term “therapy” [
18]. A few studies have suggested that coaching could be helpful for individuals with ASD within social skills training or as support within an academic setting [
28,
29].
Telehealth and internet-based mental health interventions have received increased interest over the past decade as a complement to current treatment options [
30‐
32]. For people with ASD and ADHD core aspects of the condition can sometimes pose a barrier in traditional health care. Problems with eye contact, reading body language and in processing simultaneous perceptual modalities often make face-to-face contact challenging for individuals with ASD [
33,
34]. Furthermore, difficulties with structure, motivation, procrastination and time management can lead to high dropout rates and problems with treatment adherence for individuals with ADHD [
35,
36]. In remote geographical areas there is often a shortage of practitioners specialized in ASD and/or ADHD. There is almost no published research on internet interventions within mental health for individuals with these disorders. One recent study, however, showed encouraging results for an internet-based cognitive behavioral therapy program designed for adults with ADHD [
37].
The critical period of transition from adolescence into adulthood can be difficult for those with ASD and ADHD. Less external structure from home and/or school and increased demands to independently manage the tasks of daily living pose significant executive function challenges for these individuals [
18,
24,
38‐
41]. Therefore, adolescents and young adults with these conditions often require alternatives to medical help to deal with different aspects of their daily life. There is however a great shortage of both qualitative and quantitative studies within this area. Most notably there is a need for qualitative studies examining these individuals’ own perspectives on treatment and support [
9,
10,
16,
19].
Finding forms of support that are acceptable and accessible for these individuals is imperative. Towards this objective, the aim of this study was to use a qualitative methodology to examine the experiences of adolescents and young adults with ADHD, ASD or both who had participated in an 8-week internet-based support and coaching intervention.
Discussion
Using a qualitative methodology, this study aimed to gather in-depth information about how adolescents and adults with ADHD and/or ASD experienced an 8-week internet-based support and coaching model. It also aimed to consider how such a format could benefit individuals that often struggle with traditional and existing support options. A number of interesting findings emerged, showing how specific qualities of the intervention corresponded to the needs of this particular group of patients, both in terms of the internet-based format as well as their experienced need for support in general. Findings also highlighted important requirements for receiving support and suggestions for improvements.
The first theme, “
Deciding to participate”, showed reasons for participating including expecting the internet-based model to be better suited to their situation in the light of an ASD and/or ADHD diagnosis. However, motives could also be related to previously unmet needs for support or wanting to discuss issues pertaining to living with such a disorder. Prior studies suggest that an experience of insufficient support might be common among individuals with both ASD and ADHD, especially when it comes to non-medical alternatives [
16,
17,
49,
50]. Participants further felt that coaches’ knowledge and experience of these disorders were pivotal and a necessary requirement in deciding to participate. This stemmed largely from prior negative experiences both in health care and in daily life. Such negative experiences have been recognized previously in studies concerning individuals with both ASD and ADHD, often resulting in perceived stigma and a strong desire for more knowledge and raised awareness within these contexts [
16,
51‐
53]. College students with ADHD have described experiencing a lack of knowledge about their disorder among service providers and faculty, these also being perceived as ill equipped to meet their needs [
18]. This further stresses the importance of specific knowledge and experience among professionals delivering this kind of support [
18].
Findings relating to the theme, “
Taking part in the coaching process”, showed that participants defined coaching as easy going, as a social contact and as guidance to everyday life concerns. They were also reluctant to the use of terms such as “treatment”. In a study by Lefler, Saccetti and Del Carlo [
18] students with ADHD showed a preference towards receiving help in the form of coaching as compared to when the term “therapy” was used. This could mean that IBSC might be a more appealing form of support for this kind of individual. Our participants also largely utilized the support to discuss issues directly or indirectly related to their diagnosis. Defining coaching as guidance on issues relating to ASD and/or ADHD corresponds well with the original intentions when developing the IBSC model [
12]. Viewing it as a social contact could imply that it was unclear for participants what differentiated the professional support from more informal help. The expressed importance of education and knowledge among coaches however partly contradicts this. Findings further made it apparent that participants appreciated and experienced a need for this kind of support after recently undergoing a neuropsychiatric evaluation as this could raise feelings of worry or uncertainty. A diagnosis of ADHD in adulthood can have great emotional impact, raising concerns about one’s identity [
54,
55]. Psychoeducation, with the development of compensational strategies, is an important intervention in these cases [
56] as in several other psychiatric disorders [
57]. Receiving psychoeducation has also been shown to be a strong predictor for overall satisfaction with treatment in ADHD [
58]. The intention with IBSC was to offer personalized support and coaching, as well as individualized psychoeducation in order to aid participants in creating a better understanding of their functioning connected to a diagnosis of ADHD and/or ASD. IBSC might thus be a helpful option after newly receiving a diagnosis of ASD or ADHD.
There was an expressed threshold among participants for seeking help from health care or in their own social network. This is in line with a qualitative study in which young adults with ADHD hesitated to seek and receive help as an effect of perceived stigma [
18]. Problems for individuals with ASD in initiating social interactions could also contribute to this [
59] as well as more general problems with initiative in ADHD [
60]. Hence, a valued effect of the intervention was the reassurance of having “someone to turn to” with thoughts and questions. In relation to this there was a tendency to report mostly short-term effects, such as emotional comfort and “on-tap” reassurance. Behaviors resulting in short term relief of anxiety or worry can often maintain such problems in the long run and are therefore not always advisable [
61]. On the other hand, the aim of IBSC was primarily information and help with basic strategies related to living with ASD and ADHD, targeting a lack of adaptive skills more prominent in these populations. The intervention can also be considered valuable as an option for reaching these individuals at all, considering the various and shared difficulties and obstacles to seeking and receiving help. Some long term positive consequences as a result of the intervention were mentioned, namely improved planning proficiency, self-confidence and less stress and fatigue. These were in line with results from the pilot study [
12].
The theme “
The significance of format” revealed that participants viewed communication through the written word as largely helpful, offering time to think things through, promoting precision and reducing the risk of misunderstandings. Two previous qualitative studies have highlighted the aspect of writing as a helpful way of communicating for adults with ASD [
10,
59]. The ASD-characteristic of slow processing speed has also been shown to present problems in face-to-face communication for these individuals [
10], suggesting that written communication could be useful for them. Memory issues during an ongoing chat-session were likewise alleviated, an important advantage considering the fact that working memory-deficits are a problem for individuals with ADHD [
62]. Written communication was moreover seen as helpful for disclosing sensitive issues, as shown in previous studies of internet -based treatment [
63].
Being in the privacy in one’s own home was experienced by our participants as reducing social pressure and anxiety, and promoting better focus on the subject at hand. Although not specifically mentioned, it is not unlikely that sensory issues can in part have contributed to this result. Nicolaidis et al. [
10] found that sensory sensitivities such as being disturbed by the lighting or having difficulties filtering out background noises were a prominent problem for adults with ASD within a traditional health care situation. This can be alleviated by home based IBSC. In our study, being able to communicate from one’s home was further found to lead to fewer appointment cancellations due to for example having “a bad day”. In adolescents and adults with ADHD, difficulties with initiative, planning and memory can affect treatment adherence and high dropout rates are common [
35,
36]. Individuals with ASD have furthermore been shown to experience unpredictable and variable mood swings which sometimes present a complete barrier to their activities [
52,
64]. In such circumstances, having the possibility to communicate from home is probably an advantage. However, whilst appreciating the home aspect, participants saw meeting face-to-face as valuable and health promoting and online support as a complement to, not a replacement for this. This is in line with results in the pilot study [
12]. Responses also indicated that participants felt that some kind of parallel activity outside of the program was important in order to practice skills or challenge themselves to boost the effect. Practicing skills and exercises promoting behavior change are recognized as important components in for example cognitive behavior therapy [
61] and social skills training for autism [
65] and could thus be important to consider.
The simplicity and accessibility of the support, along with perceived immediacy in contact with the coach, were appreciated features and have been recognized as hallmarks of internet-based solutions [
63]. In individuals with ADHD, immediacy and ease in receiving support might generally be key factors in promoting adherence. Also valued was the higher contact frequency facilitating rapid implementation of advice and reducing the risk of forgetting. However, it was also mentioned how the simplicity of the support could in some instances lead to less commitment and not taking the intervention as seriously as would a clinic appointment, which is also consistent with previous knowledge [
63].
Disadvantages with the IBSC included experiencing incomplete personal interaction. Also, failing technology was a problem and is important to manage before using the model on a wider scale. Difficulties in implementing advice were voiced, although for some participants the high session frequency seemed to facilitate this. It is unclear if problems of this kind are specific to this support format. Finally, suggestions from participants in the present study included a greater flexibility in support frequency, chat-support “on demand”, and being able to vary the form of communication between for example live-meetings, chat, email, video, and group-chat. A desire for practical support on hand has been voiced in previous qualitative articles, where participants suggested that a helpline would be useful to handle unexpected situations and difficult emotions [
10,
52]. However, this was tried out in part when developing the original IBSC model with less success [
12].
Trustworthiness and limitations
To ensure trustworthiness in this qualitative study certain aspects were important to consider, especially the concepts of credibility and transferability [
46]. Credibility refers to how well the method and research process is suited to and answers the research question, making the results believable [
66,
67]. To attain credibility in this study we strove to provide a detailed, clear and transparent description of the whole research process, including the gathering of data, the process of analysis and subsequent results. To clarify relations between results and the original data, representative citations were chosen. There was a consistent dialogue between co-researchers during the whole process. Transferability describes to which degree the results can be transferred to other settings [
46,
66,
67]. In this study detailed information on the context, participants and interview questions were disclosed to ensure transferability.
In relation to our results the following limitations need to be considered. Firstly, the analysis was carried out including all diagnostic categories (ADHD, ASD or ADHD and ASD in combination). Hence, it does not lend itself well to distinguishing issues or responses that differentiate the ADHD/ASD groups and how specific characteristics of IBSC suited one or the other diagnostic category. However, we also know that there is a considerable overlap between the disorders, that there are often sub-clinical ASD or ADHD-traits present and that there are shared cognitive difficulties in several domains between disorders [
7,
68‐
70]. This questions the value of a separate analysis procedure. Although the current study does not have a quantitative approach, when results were final a count was performed to see if any specific diagnostic group completely dominated a certain code or theme. No such tendency was found.
Another limitation is that for some of the participants, a significant amount of time had elapsed between receiving the intervention and taking part in the interview. This was due to the intervention taking place between the autumn of 2010 and winter 2014, and the decision to carry out an additional qualitative interview study being made in 2012. This could affect how well some participants remembered certain aspects. However, research has shown that adults with ADHD can in fact accurately recall childhood ADHD symptoms, which could imply that recollection might not be that affected [
71]. Also, the aim of this study was not to render accurate or true remembrance but rather the meaning and significance of the participants’ experiences.
The first author had previously been involved as a coach and in recruiting participants at one of the study centres. No interviews were for this reason conducted by the first author at this site. There remains a possibility that preconceptions could affect the analysis phase. On the other hand, in qualitative research this does not necessarily equal bias as long as the researcher attends to it and fosters a process of reflexivity, i.e. regarding the effect of the researcher and how knowledge is constructed during the different phases of the research process [
72]. It can then contribute to a likewise valid understanding of the subject of research. To promote reflexivity the data was also cross-examined by the second author during the whole process.
Not all participants wanted to go through with the interview unfortunately, but all of them did get the opportunity; hence it was not a convenience sample. This is, however, the first time that the participants themselves get to voice their opinions about the intervention (IBSC) described in the pilot study [
12].