Description of the Sample
Completed 6 interviews with all mothers. (children ranged in ages from:1x 10yr old, 1x 13yr old,1x 15yr old,1x 16yr old and 2 x 17yrs old) (2 x female and 4x males).
Understanding of the Role of the ADHD Clinic
This theme describes the participant’s understanding of the role of the ADHD clinic. The clinic’s role is to is help parents manage their child’s medication. However, many of the participants did not have a clear understanding of the role and, overall, the participants felt that there would be greater involvement of the Multidisciplinary Team (MDT) in the care of their child. They did not realize that the clinic focused on medication and the associated physical health needs of the child. For example, they believed that there would be greater involvement from Occupational Therapists and psychologists and his weight is checked, his blood pressure is checked. “My understanding is basically that they are there to help to support the child and the parents and any other family member what’s involved with, as in, like my daughter and to help them understand it more and more than likely just kinda it is good that there is something there for them” – one of the respondents noted. This answer shows the respondent’s expectation of multi-faceted support for parents and children.
It should be noted that the program for the diagnosis and treatment of ADHD in the clinic is a joint work of pediatric neurologists and psychotherapists, who are guided by generally recognized international standards for diagnosis and treatment. The main principles of the clinic’s specialists should be an objective diagnosis of the neurological status of the child and the characteristics of his/her behavior, the selection of drug treatment only on the basis of the principles of evidence-based medicine. An individual approach to the choice of methods of neuropsychological influence and building work both with the child and the family as a whole. It must also be remembered that ADHD is a variant of individual development within the normal range, characterized by the presence of motivation for learning, developed prerequisites for logical thinking, memory and the ability to fine motor coordination. However, to achieve the above-mentioned goals, ADHD clinics’ main task is focused on medication review. The analysis of interviews showed that respondents, in fact, expect complex results of neuropsychological influence based on MDT teams’ efforts and even the prevalence of psychotherapy approaches. At the same time, they are not considering significant regular physical examination of a child and reviewing drug treatment regular results, checking adherence to therapy, and so on: “…at the moment when we go, it is once every 3 months and his weight is checked, his blood pressure is checked, they ask me how he is getting on, they ask him how he feels. So it’s basically a check up and then a prescription, we don’t have any other interaction with the clinic.”
Analyzing categories of the respondents’ answers and relations between categories allow making some important conclusions. In particular, concluding that parents strongly believe that specially organized education and development of children with ADHD using various therapeutic methods can significantly increase the level of help provided and readiness to study at school. Positive moment is parents’ comprehension that the use of clinical therapy for the formation of school education and social life readiness is effective in corrective and developmental work with children suffering from ADHD. It consists in reducing hyperactivity, impulsivity of behavior, contributes to the formation of voluntary regulation of activity, communication skills, affects the cognitive processes development, and increases self-esteem. For example, one of the respondents noted the following: “It was trial and error, but most definitely his behaviour is improved, but it’s so much more than that, his social interaction with people. Everything has changed, I mean even when he was starting Secondary School, he goes to a Special School, so even at that that was a worry for dad’s name and I and they ran a workshop, M. did, it was for a week and we actually didn’t think he would want to go to that, but he really enjoyed it and it was very beneficial to him.” However, there is evident lack of understanding the purpose of every element in the system of ADHD management in children: “Then they went and we were seen by an OT from the Name of place but they told us because he was attending the CAMHS Team, so it’s a conflict of interest, so they couldn’t actually see him on the Name of place, so they gave us a home programme to do. We used the home programme but really we probably would have been better off with seeing a professional from time to time.”
Many parents feel an urgent need for communication and support from specialists, as well as a desire to cooperate with them. Parents expect that the clinic will inform them about the course of ADHD, about the impact of various methods of corrective treatment and supportive educational methods. Parents consider particularly necessary measure the family systems approach, which leads to a reflection of one’s own experience and has a beneficial effect on family therapy in general.
Already the first participant manifested evident lack of proper understanding of the clinic’ role: “…to be honest what I thought in the beginning and what it has turned out to be is two completely different things. I initially thought that they would actually have more help and information for me, but it seems like at the moment the only thing I am really getting out of it is check ups because child’s name is on medication so they check her height and weight, that she is growing normally and her blood pressure is fine.” Although other participants were not so categorical in their opinion, still all of them have no clear idea about the intention of ADHD clinics.
In general, the respondents are satisfied with the level of examination. The clinics offer a comprehensive plan for diagnosing and treating children-patients with suspected ADHD. In short, this comprehensive approach includes the following:
- Questionnaires and appointments with therapist
- Assessment of attention and concentration during meetings with a doctor
- Computer diagnostics, consisting of specialized tests
- Psychotherapy sessions
- Recommendations for parents and caregivers
- Selection of the necessary drug treatment, if required
The results of the interviews show that the attitude of parents towards the clinic and the assessment of the provided assistance is rather ambiguous. While some of the respondents expressed a very high assessment of the attitude of the clinic staff and the effectiveness of the care provided, others believed that the visit to the clinic did not bring any results. At the same time, the level of parents’ satisfaction with the results obtained after visiting clinic, is rather low, especially in comparison with the average assessment of health care services throughout the country.
Parents understanding of the role of the ADHD clinic is ambiguous. The overall code category lack of understanding as evidence by interviews where participants spoke about need for social supports for families. Only one participant out of the overall sample referenced the clinic been a medication review clinic. A number of parents did mention physical health reviews which would be in keeping with the medication review clinic.
Analysis of interviews shows that parents consider ADHD clinic rather as a kind of consulting center. One of the respondents was greatly disappointed by not receiving services of deep consulting, training, psychological support. One of the respondents perceived the clinic as regular check up and prescription facility. The respondent No.3 said the purpose of the clinic is to assess and treat children with ADHD.
At the same time, the clinic is intended for provision of an interdisciplinary, collaborative model of diagnosis and targeted treatment of ADHD and related disorders. The clinic’s team-based approach enables awareness of the clinical data on the part of both medical and psychology providers. In turn, this leads to an improved ability to offer the most optimal treatment options for each individual child and family. If medication has not produced the optimal response, targeted behavioral strategies may be recommended before the medication dose is increased, to avoid potential adverse medication effects. However, if the family cannot comply with parenting recommendations for some reason, the team may place greater emphasis on medication management. In other words, the general goal of the ADHD Clinic is to improve a child’s functioning over the course of several months. Some parents noted attendance of clinic since 2016 and some positive changes during the attendance period up to the current moment. However, the level of change in this case does not correspond to the period of observance in clinic. It can be the indicator of insufficient cooperation between parents and clinic staff, the main reason of which is namely parents’ misunderstanding of the clinic purpose, and wrong expectations.
At the same time, the respondent 4 claimed about the absence of proper attention to the child, conducting unnecessary interview with parents with the following repetition of their words, and other incomprehensible and inconsistent actions: “They told me they didn’t have any other……., whenever I applied for anything for child’s name, I was passed on and passed on and passed on to every place within reach and nobody was willing to take him on because he does have a diagnosis of Aspergers and SPD….hey did an assessment on him and they met child’s name once. They interviewed myself and dad’s name for 2 hours, twice, then reworded everything we said. So our experience of clinics has never been really good.”
Thus, understanding the role of clinic is naturally connected with the perceived experience of attending the clinic. Thematic analysis and correlation of categories make it possible to formulate the conclusion that the study results complement the understanding of the mechanism of formation of satisfaction with medical care in an ADHD clinic and indicate that the proportion of parents who are satisfied with medical care is not an independent criterion for the quality of service delivery. There is an obvious functional dependence of experiences of attending the clinic from understanding the role of clinic. If the parents expected psychological support and education and did not receive it in the clinic, they assess the activity and intention of this clinic as dissatisfactory and useless accordingly.
Experiences of Attending the Clinic
The first participant, expecting some consulting and support from the clinic and getting, in fact, physical examination for medicine review, described her experience positively but solely in terms of medical personnel ‘soft skills’, that is, communication, politeness, attentiveness, and so on: “the doctor and nurse that I am seeing with child’s name at the moment, they are lovely, absolutely, I can’t say a bad word about them, they are absolutely lovely and they do the best they can with the resources they have.” All participants expressed highly positive experiences with attending the ADHD clinic. They spoke very positively about the staff the clinical nurse specialist and the registrar who run the clinic. The opinion of respondent 3 is quite representative for it: “They’ve always been a great support.”
Analysis of respondents’ answers shows that ADHD clinics adhere to patient-centered approach. Standard operations policy (SOP) was especially highlighted by parents as this is one of the values of operation within the mental health service. As parents noted, client-centered approach increase their confidence in clinic’s service.
It should be noted after analysis of interviews results that a kind of paradox is observed in the work of clinics with children-patients and in the interaction with parents. On the one hand, the main task of ADHD clinic is to review medication prescription, based on assessment of various physical parameters of a child. On the other hand, as our empirical study shows, parents get experience mostly on part of communication and loyalty of medical staff – one side of patient-centered approach. Positive relationships with clinicians were involved in the clinic quotes from parents whilst parents identified a number of factors that they were dissatisfied within the service and therapeutic relationships diminishing their satisfaction with the services.
It is known that the patient-centered approach is based on a number of key principles, namely: 1) The first principle of patient-centeredness is to respect consumer values, needs and preferences; 2) The second principle is the integrity, consistency, and continuity of the treatment and diagnostic process; 3) The third principle is the patient’s awareness of all the details of the medical and diagnostic process, the course of medical and social rehabilitation, etc. This principle is quite broad and covers many aspects. Thus, the patient, if desired, should have access to information about his disease, about the clinical condition, about treatment options, as well as about methods of prevention; 4) The fourth principle is the creation of comfortable conditions for the patient’s stay in the process of providing him with medical care at all stages; 5) The fifth principle is to provide emotional support for the patient; 6) The sixth principle is the creation of conditions for the patient to communicate with his immediate environment. Attention should be paid to the patient’s subjective comfort level, providing comprehensive support whenever possible; 7) The seventh principle is to ensure the continuity of the treatment process, as well as to meet expectations in terms of its modification over time. To ensure this principle, first of all, it is necessary to convey detailed information about drugs, restrictions, diets in a form accessible to the patient; 8) The eighth principle is basic and forms all the previous principles. It consists in ensuring the availability of medical care for a potential patient. These are physical accessibility to a medical organization, the availability of public transport, the ability to make an appointment with a doctor, the ability to choose a doctor, and a treatment method.
Analysis of the interview results shows that ADHD clinics evidently adhere to the fourth, fifth, and sixth principles, losing sight of the other important principles. While all parents-respondents had positive experience in communication with medical staff, they still did not understand the very purpose of attending the clinic. At the same time, namely this purpose determines the expediency of such clinics functioning. The first respondent noted absence of any benefits from attending the clinic, claiming that all the procedures provided there can be easily fulfilled at home by non-specialist: “Well to be honest, I actually don’t find it helpful at all, but that is the wrong to say really. Basically everything they do at the moment I could be doing at home. I could check her weight at home, I could check her height at home, I could even buy a blood pressure machine for home and check it that way and I mean my GP could just ring me with a prescription and she could do the height and weight as well and blood pressure.” Thus, the main task – medication review/prescription – is not fulfilled properly by ADHD clinics.
Moreover, the key basic principle of a patient-centered approach is to increase patient compliance and patient loyalty. In this aspect, it is worth distinguishing between these two concepts, although from a linguistic point of view, they are certainly synonymous. The separation of these concepts in the formation of a patient-oriented approach is necessary due to the different functional significance (load) of these definitions. Commitment to adherence to therapy, as well as the fulfillment of the doctor’s requirements for compliance with the treatment-protective regime, reflects the personal relationship in the “doctor-patient” system. However, this factor is determined by the patient’s level of confidence in the doctor’s competence, his/her level of professional training (qualification). At the same time, the category of “adherence” includes several components: the behavioral component (of the patient), focus on results, and the degree of possibility (conditions) of fulfilling the prescriptions. In practice, the level of “adherence” is usually measured by the correctness or incorrectness of the medication prescriptions (adherence to prescribed doses, adherence to the time interval, etc.). Taking into account medication review as the main task of ADHD clinics, focusing attention on compliance and loyalty seems appropriate. However, analysis of the respondents’ answers shows that clinics do not pay necessary attention to it. In turn, lack of compliance and loyalty leads to parents’ dissatisfaction special needs becomes a cardinally important prerequisite for providing competent assistance to the child with clinics’ services, although these two categories refer to parents’ area of responsibility.
The diagnostic process in case of ADHD is quite complex and time-consuming, requiring a high level of competence and a multidisciplinary team of specialists. It has several basic goals: establishing the diagnosis of ADHD, identifying comorbid problems and comorbid disorders, localizing the disorder in the biopsychosocial context of the child’s life – in particular, in the context of the family and social environment – in order to ultimately obtain a holistic picture of the child’s life. This is a kind of “reconnaissance” – it allows assessing the disposition of forces on the ‘field,’ internal, intrapersonal and external, interpersonal dynamics, the presence of both disorders, psychotraumatic factors, and protective, resource factors. Only if the specialist feels the dynamics of the situation, the prognostic significance of various factors in the child’s life and their complex interaction, it is possible to build a successful and realistic care plan, which is always the end result of a good diagnostic process. In fact, ADHD clinics carry out continuous diagnostic process while performing medication review, and pay attention even to minor changes. At the same time, as it is evident from the respondents’ answers, parents expect fast tangible results, not giving any significance to ‘small-steps’ checks: “…basically, all in all, I could just be doing all these checks directly with my GP and have the prescription renewed that way.”
Accordingly, the process of medication review for ADHD patients should be closely connected to the diagnostic process, with the application of the same criteria, with the systemic judgement of a specialist. It implies both close interaction in communicating with parents and high-quality physical examination of a child. The results of our study show that, although medical staff in ADHD clinics attempts to include all the necessary components to physical examination and psychological tests, communication with parents or child is carried out rather on the level of ‘soft skills,’ and not professional analysis. In particular, the respondent 5 noted: “I think it is brilliant every time we go its very centered on child’s name and what she is doing and how she is coping and name of nurse &Registrar/doctor have loads of time for Child’s name and they always make her feel at ease and she is comfortable enough to talk to them.” Thus, this experience resembles visiting children educational center, and not the clinic dealing with the disease such as ADHD.
However, establishing a diagnosis and achieving an understanding of the situation in the paradigm of the biopsychosocial model are not the only goals of the diagnostic process. Another extremely important and often neglected goal is to establish a therapeutic alliance with family and child, create partnerships, a common vision of problems, goals and a jointly formed plan of action to achieve them. Without alliance with the family, therapeutic interventions are doomed to fail. Despite the fact that building relationships with family may seem easy and self-evident, namely in this area the foundations of misunderstandings are most often laid, which lead to ineffective cooperation and, accordingly, the absence of the expected result. The ability to build partnerships, equal relationships requires both certain communication skills and personal characteristics. This area is often not given enough attention, as it is evident from the interviews. Therefore, parents often complain and express dissatisfaction with the quality of the relationship they have with specialists.
An alliance with parents is also impossible without a common vision and understanding of the child’s problems. The diagnostic process is indeed a general study of problems, it helps to see more deeply and comprehensively the biopsychosocial interactions in the child’s life, not only to the specialist, but also to the parents, and, therefore, inevitably is accompanied by psychological education and training of the child’s relatives. Understanding the child’ special needs becomes for parents a crucially important condition for providing him/her with competent help and successful upbringing.
The participant 3 described her experience in the following way: “…regards getting help in school, for doing his exams. For Occupational Therapy, for Speech & Language, well he was waiting to do Speech & Language, I don’t know how we’re going to do it but because it was meant to happen through all this, but I have no complaints in any way.” Such result seems to be a ‘patchwork’ in the system of ADHD complex therapy. There is no area for biopsychosocial interactions and results of multidisciplinary team work.
At the same time, an array of measurable positive results from attending ADHD clinic can be compiled from the respondents’ answers. In particular, the respondent 4 noted positive changes in learning process: “Oh god a lot, her school work as soon as when she started attending the ADHD clinic her writing as big now it is very neat, there has been so many changes because before when she wasn’t in the ADHD clinic she was hyper and everyone couldn’t understand but now they kinda do so she is a lot calmer with them in a way.” Among other benefits mentioned, there are improvements with concentration and with cognitive and motor skills; children became more manageable and sleep better.
The entire support system should be built on the basis of the coordinated work of a multidisciplinary team of specialists who adhere to the same values in their work and own a single system of methods. Understanding this should be the basis for the correct perception by parents of the purpose of the functioning of clinics. In this context, the role of clinics seems to be very significant.
Despite the fact that building relationships with family may seem easy and self-evident, namely this is the area where the foundations of misunderstandings are most often laid, which lead to ineffective cooperation and, accordingly, the absence of the expected result. The ability to build partnerships, equal relationships requires both certain communication skills and personal characteristics. In the training of specialists for working in ADHD clinics, this area is often not given enough attention. Therefore, parents often complain and express dissatisfaction with the quality of the relationship they have with specialists. An alliance with parents is also impossible without a common vision and understanding of the child’s problems. The diagnostic process is indeed a general study of problems, it helps to see more deeply and comprehensively the biopsychosocial interactions in the child’s life, not only for the specialist, but also for the parents. Therefore, it is inevitably accompanied by psychological education and training of the child’s relatives.
For parents, understanding the child, their special needs becomes a cardinally important prerequisite for providing competent assistance to the child, for his successful upbringing. Parenting is usually citing as the most important therapeutic intervention available for children with ADHD. Thus, the diagnostic process is at the same time therapeutic one – the border between diagnosis and the beginning of therapy is very arbitrary. This is, in fact, the core benefit expected from the ADHD clinics, and lack of parents’ understanding of it hinders recovery process.
The measures which have significant meaning for therapy, already in the diagnosis process, are often carried out, for example, with the involvement of both parents in the study of ways to solve problems, reattribution (that is, redistribution of responsibility) regarding the causes of behavioral problems, etc. During a qualitative diagnostic process, parents usually experience not only a certain “catharsis,” liberation from feelings of guilt, disappointment, hopelessness, confusion, etc., but the motivation for action, unity, and hope strengthens. If to return to the metaphor of “reconnaissance,” then the diagnostic process not only provides a map of the location and interaction of forces, but also contributes to the mobilization of resources, the pooling of efforts and the establishment of effective partnerships, education of the child’s relatives.
Many of the parents identified the need for further MDT involvement outside of the ADHD clinic. Whilst this is not a critique of the ADHD clinic it was reference more to the wider CAMHS service. Many of the parents requesting more occupational therapy(OT) involvement. The lack of clear information and lack of resources about a service can lead to parents becoming frustrated. The conclusion can be made in this regard about the lack of necessary informing parents about the activity and purpose of ADHD clinics.
Moreover, challenges of changing needs at different developmental stages were noted during the interviews. Parents interviewed in the study identified needs at different developmental stages. They mentioned a change in needs depending on the child’s developmental stage. One of the most identified needs parents discussed was the transition to adult services. Here, again, lack of clinic core purpose is evident – parents, in fact, expect help by the principle of single-window system, although it is not the case in ADHD treatment institutional network.
Needs Identified by Parents Who Attend the ADHD Clinic
Most parents, regardless of the type of family, do not have enough knowledge about what ADHD is, how ADHD manifests itself, whether ADHD differs from other manifestations of mental health disorders, whether drug-free correction is possible, etc. Low awareness of adults about ADHD, ignorance of tactics and forms of interaction creates an aura of social misunderstanding, pressure and discontent around such a child. As the interview results show, parents expect results from the efforts of an interdisciplinary team of professionals. “If I was to ask for anything it would be for child’s name to go back over for another occupational therapy appointment. I know he is getting Speech & Language but the girl had rang, well obviously because of the Covid now, she said she would get in touch around an appointment, but that was back in March I think. But whenever she gets an appointment that’s fair enough to fit us in” – one of the respondents said. The other respondent’ reply also is representative in showing parents’ perception of the needs: “I would like Child’s name to go to a summer camp that would help for his ADHD. When changed teacher in school his previous teacher didn’t inform his new teacher about Child’s name difficulties and no supports were in place for him then.”
Another respondents noted the need of the child to communicate with other children suffering from ADHD – in her opinion, it will benefit psychological state of the child and comprehension of the disease: “Well yeah I mean it could even like for teenagers when they get to a certain age just to make them feel more secure about themselves so that they can talk with other ones with the same kind of, I don’t want to say, ‘disease’ but you know what I mean, that have the same issues as they have. I mean child’s name ADHD isn’t really one that she can’t sit still, it’s more in her head, she can’t concentrate, and she can’t focus her thoughts so it is all scrambled in her head.” As it was mentioned above, the respondents mainly expect single-window system in ADHD clinic, with complex range of services, including occupational therapy: “I know OT has helped him so if it was an option that you could get OT there instead of having to go one place for this and another place for that. To have it all in the one place.” All the respondents noted crucial necessity for peer support group for those with ADHD. The respondet 6 even suggested the expedience of specalized summer camp: “I would like Child’s name to go to a summer camp that would help for his ADHD.”
Thus, patents expect ADHD clinics to work as multidisciplinary and multifunctional centers for treatment of ADHD, although this is not the purpose of these clinics. Such inconsistency of expectations and reality leads to improper perception of the results provided by clinics, dissatisfaction of parents, and their subsequent overall disappointment in the national system for treatment of children suffering from ADHD. The presence of semantic barrier is observed, and overcoming it involves a detailed clarification of the interaction process. This situation requires broad discussion, an attempt of which is made in the next chapter. Analysis of modern approaches to the organization of the psychocorrectional process with the participation of children with ADHD allows concluding that it is necessary to include various forms and methods, which is supported also by our empirical research.
On the one hand, socio-psychological – primarily, family – factors act as one of the links in ADHD pathogenesis, and on the other hand, the clinical manifestations of ADHD lead to the development of problems in the family. For example, factors that may decrease familial anxiety regarding the transition to onward services include clear pathways and guidelines with young people with ADHD, effective discharge planning and peer support for parents and children. It is generally accepted that the treatment of behavioral disorders should be comprehensive, that is, include both medication therapy and psychotherapeutic methods. In this regard, analysis of the interviews results in complex with previously conducted literature review have the potential to propose rational ways to combat the problem. A comprehensive method of treatment, including the choice of the type and doses of psychopharmacological drugs based on the results of computer analysis of the EEG of each patient, can significantly improve the outcomes of ADHD. The method also implies the use of adaptive biofeedback, physiotherapeutic treatment and specially developed methods of group and family psychotherapy. In turn, the results imply elimination ADHD main manifestations within several months, instead of several years – when using the currently existing treatments.
Evidently, to obtain a full-fledged therapeutic effect, it is necessary to combine the use of psychopharmacology, adaptive biofeedback, physiotherapeutic treatment. Methods of individual, group and family psychotherapy are needed, which requires special training of neurologists, psychotherapists and psychologists. Taking into account the results obtained during empirical study, evidently, it is expedient to include some of additional functions in the practice of ADHD clinics activity.