Evidence reviews for Information and support for people with ADHD

1. Information and support for people with ADHD

1.3. Characteristics table

For full details see the review protocol in appendix A.

Table 1

Characteristics of review question.

1.5. Qualitative evidence

1.5.1. Included studies

Sixty-nine qualitative studies were included in the review;^{2,8,12,14,27,30,34,35,37,41,44,49,56,60,65,67,71–75,77,80,83–87,91,94,96,99,105,108,111,112,114,119,123,127,131,134,137,138,142,145–147,149,153,156,157,161,163,166–169,174,181,184,185,188,189,191,192,198,199,201} these are summarised in Table 2 below.

Fifteen studies focused on the views of adults with ADHD. Forty studies focused on the views of children and young people with ADHD and their families or carers. Four studies focused on the views of healthcare professionals dealing with ADHD. Four studies focused on the views of teachers. Six studies involved the views of a mix of people with ADHD, their families, healthcare professionals or teachers.

Key themes from these studies are summarised in Section 1.5.2 below. See also the study selection flow chart in appendix C, study evidence tables in appendix D, and excluded studies lists in appendix G.

As a large number of papers were identified for this review, inclusion was halted once saturation was reached. Saturation is the point at which no new information emerged from studies that were found to match the review protocol. These five studies are listed in Table 50 in Appendix G:

1.5.2. Excluded studies

See the excluded studies list in appendix G.

1.5.3. Summary of qualitative studies included in the evidence review

Table 2

Summary of studies included in the review.

See appendix D for full evidence tables.

1.5.4. Qualitative evidence synthesis

Table 3

Review themes: Diagnosis.

Table 4

Review themes: Challenges for people with ADHD.

Table 5

Review themes: Challenges for parents.

Table 6

Review themes: Healthcare professionals.

Table 7

Review themes: Schools.

Table 8

Review themes: Services.

Table 9

Review themes: Methods of providing information and support.

1.5.4.1. Narrative summary of review themes

1.5.4.1.1. Theme 1: Diagnosis

Review theme 1: Benefits of diagnosis

People with ADHD and their parents and carers noted many benefits to receiving a diagnosis. They felt a sense of relief and elation that their behaviour was not their fault; they felt a diagnosis helped to explain the difficulties they had previously faced throughout their lives. Both parents and people with ADHD saw improvements to self-esteem, due to the legitimization of their difficulties; they thought more highly of themselves, and felt that others did too. People with ADHD felt they had a better understanding of themselves following a diagnosis. Parents felt that the diagnosis reduced stigma against their child. They also felt it reduced a sense of guilt that they themselves had, as they had attributed their child’s behaviour to their own parenting. Some reported an improvement in the parent-child relationship due to realising that their child needed help and support. A diagnosis also gave access to coping strategies to deal with symptoms, and a range of ways to improve behaviour through pharmacological and non-pharmacological interventions.

Explanation of quality assessment: minor methodological limitations in the contributing studies; moderate concerns about the coherence of the theme with conflicting evidence that lowers our confidence, due to evidence that a diagnosis can also cause harm; partial relevance due to the contributing studies being conducted mainly outside of the UK; minor concerns about inadequacy as the evidence is not sufficiently deep. There was a judgement of moderate confidence in this theme due to concerns regarding the coherence of the theme.

Review theme 2: Harm of diagnosis

People felt that a diagnosis led to stigma and discrimination from others. For children, this effect was seen both inside and outside of school. For example in school they felt that they were often blamed for things that they had not done. Similarly, parents felt stigmatised by teachers, their own family, people they didn’t know in public places, and other parents. Many felt fearful of stigma; some people did not tell people about their diagnosis and isolated themselves as a result. Others opted to act as their own advocate and explain their condition to people they came across in their day-to-day lives. Many felt like they ‘didn’t belong’ in society due to their diagnosis, felt ‘abnormal’, embarrassed and ashamed at being diagnosed with ADHD

Explanation of quality assessment: minor methodological limitations in the contributing studies; moderate concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing studies mainly being conducted outside of the UK; minor concerns about inadequacy as the evidence is sufficiently deep. There was a judgement of moderate confidence in this theme due to the concerns regarding the coherence of the theme.

Review theme 3: Doubt of diagnosis

People diagnosed with ADHD had varying degrees of doubt around their diagnosis. Some questioned the existence of ADHD, some questioned whether they had it, and others reported loved ones being sceptical.

Explanation of quality assessment: minor methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing study being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep or of high quantity. There was a judgement of low confidence in this theme due to the concerns regarding the adequacy of the data.

Review theme 4: Missed diagnosis

People that had been diagnosed with ADHD later on in their lives regretted that they had not been diagnosed sooner and questioned if their lives could have been better if they had. They felt that not being diagnosed had many negative impacts on many aspects of their life. For example, difficulty and failure in employment and education could have been avoided. This led to an accumulated sense of failure, with many reporting losing their jobs or getting into trouble for reasons related to their symptoms. Emotional wellbeing could have also been improved with a diagnosis. Some reported psychological breakdown and suicidal ideation as a result of their symptoms. Others felt their symptoms led to substance abuse, which could have been avoided. Others felt that relationship problems were worsened as a result of their missed diagnosis.

Explanation of quality assessment: minor methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing study being conducted outside of the UK; minor concerns about inadequacy as the evidence is not sufficiently deep or of high quantity. There was a judgement of moderate confidence in this theme due to the concerns regarding the applicability of the data.

1.5.4.1.2. Theme 2: Challenges for people with ADHD

Review theme 5: Recognition

Some teachers felt that inattentive behaviour is as problematic as hyperactive behaviour but difficult to pinpoint. Some teachers were not aware of these symptoms of ADHD, which could impact the support this subgroup receive during school time.

Explanation of quality assessment: moderate methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing study being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep or of high quantity. There was a judgement of low confidence in this theme due to the concerns regarding the adequacy of the data and methodological limitations.

Review theme 6: Academic and employment impact

ADHD is often related to academic impairment. People reported an inability to listen in class and carry out work both inside and outside of school. People reported not having clear techniques of how to organise and carry out their schoolwork. They had difficulty juggling multiple tasks and in making decisions related to work. They found reading comprehension difficult, reported motivational problems and found they got easily distracted. Many didn’t feel that they could discuss accommodations with their teachers, and felt ashamed when they did have to utilise accommodations, such as taking tests in disability centres. Adults with ADHD reported difficulty in finding suitable work roles, with some being unemployed due to this.

Explanation of quality assessment: minor methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing study being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep. There was a judgement of moderate confidence in this theme due to the concerns regarding the adequacy of the data and methodological limitations.

Review theme 7: Psychosocial impact

People felt that ADHD was greatly impacting their psychosocial functioning. Young people with ADHD often did not have many friends or take part in social activities. They felt that their friendships often didn’t last long, and they reported not spending time with friends outside of school. People felt that they had a low tolerance for others behaviour, which impacted on their ability to take part in social activities. People also reported a range of negative emotional difficulties related to their behavioural problems and the way others reacted to them. They felt sad, angry, frustrated and ashamed at their behaviour.

Explanation of quality assessment: minor methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing study being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep. There was a judgement of moderate confidence in this theme due to the concerns regarding the adequacy of the data and methodological limitations.

Review theme 8: Bullying

Children and young people with ADHD reported that they had been bullied by their classmates. They felt that this was due to symptoms such as poor social skills, low self-esteem and aggression.

Explanation of quality assessment: minor methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing study being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep. There was a judgement of moderate confidence in this theme due to the concerns regarding the adequacy of the data.

Review theme 9: Impact on life

People with ADHD reported that their symptoms had a huge impact on their day-to-day lives. They felt that their symptoms greatly impacted their ability to undertake everyday tasks. Some felt that their symptoms impacted the path that their life has taken, and they have made decisions based on the best environments and activities for their symptoms. Parents worried about the impact that this would have in the long time, such as coping at university, managing money and driving.

Explanation of quality assessment: minor methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing study being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep. There was a judgement of moderate confidence in this theme due to the concerns regarding the adequacy of the data.

Review theme 10: Substance abuse

People with ADHD felt that they had addictive personalities, which resulted in substance use. Some had got into trouble with their schools as a result of substance misuse. Others felt that their substance use was a way of trying to minimise their symptoms and feel ‘normal’. Some drank alcohol to bring a feeling of calm. Whereas others felt that nicotine from smoking helped to improve their symptoms.

Explanation of quality assessment: minor methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing study being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep. There was a judgement of moderate confidence in this theme due to the concerns regarding the adequacy of the data.

Review theme 11: Driving

People with ADHD felt that their symptoms impacted on their ability to drive, as they were easily distracted and not as careful as they should be.

Explanation of quality assessment: moderate methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing study being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep. There was a judgement of low confidence in this theme due to the concerns regarding the adequacy of the data.

Review theme 12: Experience of support

Young people felt that their parents’ lack of understanding or knowledge of ADHD made life more difficult for them and left them feeling frustrated. Some did feel in control of their symptoms and didn’t need additional help from family members or healthcare professionals, whereas some required a large amount of support to stay on track. They also reported limited support from teachers, and felt that they needed more guidance at school, but there was a lack of available support. In addition, people with ADHD felt that doctors needed to explain ADHD better, particularly during childhood, to help patients understand their condition better.

For those that had the support of their families, they reported that they found their parents’ ability to create a structured environment and teaching strategies of coping to be useful. However, they also felt that their parent’s attitudes towards the diagnosis influenced their own. For example, they felt that their parents own worries greatly influenced their own fears and worries about the condition. Some reported being told misleading information by parents, such as that they would ‘grow out’ of their condition; they felt that this information was misleading.

Explanation of quality assessment: moderate methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing study being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep. There was a judgement of moderate confidence in this theme due to the concerns regarding the applicability of the data and methodological limitations.

Review theme 13: Conflict

Children and parents reported incidences of child maltreatment, in the form of parents harming their children, as a result of their child’s behaviour and the conflict that arose from this. Conflict often arose as a result of homework supervision, parent’s demands when the child was playing, parents misunderstanding their child’s behaviour, and parents threatening to remove their child from their home

Parents also reported serious incidences of being physically abused by their children, during times of aggressive and disruptive behaviour. They specified being hit and having their hair pulled out, along with verbal abuse. Conflict often arose as a result of homework supervision, parent’s demands when the child was playing, parents misunderstanding their child’s behaviour, and parents threatening to remove their child from their home.

Explanation of quality assessment: moderate methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing study being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep. There was a judgement of moderate confidence in this theme due to the concerns regarding the applicability of the data and methodological limitations.

1.5.4.1.3. Theme 3: Challenges for parents

Review theme 14: Experiences of support

Although some parents felt they have adequate support from their families, healthcare professionals and teachers, other parents reported a lack of support mainly from spouses and other family members, and from both healthcare and educational professionals. They felt that these professionals had a poor understanding of the nature of ADHD and a lack of skills to help to manage their children, and felt that their concerns were being dismissed. Parents reported having to battle to gain support from professionals, particularly with teachers that could not manage their child’s behaviour.

Parents reported a lack of support from schools and teachers. They felt they were being blamed for their child’s ADHD and had a lack of support from the school system. They felt that even when schools were trying to be supportive, they did not consider the needs of the child properly. Some parents felt that teachers did not have enough of an understanding of ADHD, which led to these discrepancies in support needed and support given. Issues included disagreements around treatment and behaviour, poor communication, and a lack of understanding for the parents’ difficult situation.

Parents wanted healthcare professionals to listen to them more and offer more support. They felt that some did not give support and advice specific to their situation, and found some were unwilling to take any responsibility in order to support their child. In some cases they felt that they were made out to be the expert in the management of their child, but many parents felt that this were not the case. In addition, Mothers also reported that fathers were not supportive in the care of their children. They felt that in some cases, fathers played a negative role in the management of child care. This resulted in difficulties in their marriage. Some did not understand their child’s symptoms, and were reluctant to believe the diagnosis was real.

Explanation of quality assessment: moderate methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing studies mainly being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep. There was a judgement of moderate confidence in this theme due to the concerns regarding the adequacy of the data and methodological limitations.

Review theme 15: Psychosocial impact

Parents described vast and severe psychosocial implications of their child having ADHD. They reported high emotional distress. This was a result of the difficulties they experienced in parenting their children, their worry about their child’s behaviour, difficulty in tracking their child’s academic success and keeping them focused on school work, and difficulties in helping their children undertake daily tasks. Feelings of frustration and worry were also apparent when parents could not find alternative treatments to medication. They felt their treatment decisions would always negatively impact their child, regardless of their choice.

Some also had feelings of embarrassment and disappointment when their children didn’t act like others their age. This was mostly apparent in fathers that wanted their children to be involved in athletic activities. Parents also reported feelings of guilt and remorse for not having recognised the symptoms earlier. They often attributed their parenting as the cause of the problems their child was facing, which resulted in further guilt. Parents reported having no social lives, with their lives completely taken over by their child. Their child’s behaviour often meant that it was difficult to find babysitters, or parents would not be comfortable leaving their child. In addition, their concerns over their child’s behaviour meant that they would avoid taking them to social events.

Explanation of quality assessment: moderate methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing studies mainly being conducted outside of the UK; minor concerns about inadequacy as the evidence is sufficiently deep and of high quantity. There was a judgement of moderate confidence in this theme due to the concerns regarding the methodological limitations.

Review theme 16: High demand

Parents reported that bringing up children with ADHD was highly demanding, and caused high levels of exhaustion, both emotionally and physically. Parents felt they needed more information on how they could manage their child’s symptoms, particular around mood swings and what to do in certain situations. Parents had to constantly structure and monitor their child’s daily routine, and assist them in their activities. This caused feelings of guilt as they had less time to care for their other children. Parents reported having to make many sacrifices in order to care for their child adequately, such as reducing their working hours or stopping work entirely. They did not feel other people were equipped to look after their children safely, including close family members. This is because they didn’t understand the extent of the behavioural issues the child exhibited.

Explanation of quality assessment: minor methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing studies mainly being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep. There was a judgement of moderate confidence in this theme due to the concerns regarding the adequacy of the data.

Review theme 17: Employment/education

Parents reported having to reduce their working hours or stop working entirely to care for their child. They often put their career or educational opportunities on hold as they committed themselves to caring for their child

Explanation of quality assessment: minor methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing studies being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep or of high quantity. There was a judgement of moderate confidence in this theme due to the concerns regarding the adequacy of the data.

Review theme 18: Access to services

Parents had difficult experiences in accessing the services they needed. Some found that when their child was initially diagnosed, it was hard for them to understand what they should do or where they should get assistance. Others reported not being offered non-pharmacological treatment options. Some felt that they had to push for a diagnosis and subsequent treatment. However, others felt unable to push for the care they required, which led to delays in diagnosis, feelings of disempowerment and distress for the entire family.

Explanation of quality assessment: moderate methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing studies being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep or of high quantity. There was a judgement of low confidence in this theme due to the concerns regarding the adequacy of the data and methodological limitations.

Review theme 19: Information needs

Parents felt they had a limited understanding of ADHD. They reported wanting more information on the causes, mechanisms, and functional implications of ADHD. Some parents felt that their parenting skills were to blame for their children’s symptoms. They felt that healthcare professionals needed to explain ADHD better, particularly during childhood, to help patients understand their condition and therefore manage it. Parents also felt that there was a need for professionals to have more information and training for themselves too, in order to provide them with support.

Explanation of quality assessment: moderate methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing studies being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep or of high quantity. There was a judgement of low confidence in this theme due to the concerns regarding the adequacy of the data and methodological limitations.

1.5.4.1.4. Theme 4: Healthcare professionals

Review theme 20: Diagnosis

Healthcare professional’s personal perspectives were a factor for whether or not a child would receive a diagnosis, with some feeling that ADHD is over diagnosed, and some not feeling comfortable in making a diagnosis. They reported that they often took into account the wishes of the family, and the impact that a diagnostic label could have, when deciding to make the diagnosis. They also found it difficult to interpret the family and child difficulties in each consultation, feeling that they were attempting to separate cases out into ‘real’ ADHD and ‘pseudo’ ADHD.

Some GPs in particular did not feel competent in diagnosing ADHD, due to a lack of knowledge and experience, and due to having too little time to do some. They felt that they did not have adequate training in the assessment of ADHD. Parents felt that healthcare professionals were acting like their child’s behaviour was normal, which delayed them receiving a diagnosis. In addition, some GPs were unaware of where they could refer patients to.

Explanation of quality assessment: minor methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing studies being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep or of high quantity. There was a judgement of moderate confidence in this theme due to the concerns regarding the adequacy of the data and the applicability of the data.

Review theme 21: Recognition

Some GPs found the recognition of ADHD difficult, with some not knowing the difference between ‘normal’ and ‘abnormal’ behaviour. Some felt that they did not have adequate training in the recognition of ADHD. Some noted similarities in levels of hyperactivity across mainly families, but noted that some parents would not mind this level of hyperactivity, whereas others would seek help for the symptoms. GPs also emphasised the view that family dysfunction could lead to problem behaviour or to a ‘dysfunctional’ family seeking help for their child.

Explanation of quality assessment: severe methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to some of the contributing studies being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep or of high quantity. There was a judgement of low confidence in this theme due to the concerns regarding the adequacy of the data and the applicability of the data.

Review theme 22: Attitudes

Some GPs had negative attitudes towards ADHD. They felt that a diagnosis could do more harm than good. They reported seeing ADHD as an artificial, ill-defined and overused category. GPs felt that parents seeking support were attempting to avoid dealing with possible shortcomings of their parenting. In addition, parents found GP’s attitudes to be dismissive and disempowering; with some finding that GPs did not believe that their child had hyperactivity problems. GPs felt that often ADHD symptoms were caused by difficult family situations and poor parenting, often feeling that labelling the symptoms was not helpful.

Explanation of quality assessment: severe methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to some of the contributing studies being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep or of high quantity. There was a judgement of very low confidence in this theme due to the concerns regarding the adequacy of the data and the applicability of the data.

Review theme 23: Management

Some GPs understood their role in treatment management for children with ADHD. However, others felt that they did not have adequate training to do so, or had little interest in being the primary care provider for children with ADHD. Some GPs had taken part in an online training course in ADHD, and felt more confident in managing patients with ADHD as a result. Others reported that they would be more willing to be involved in the care of children if they received more training to do so. In addition, GPs displayed limited knowledge and understanding of the side effects that could present with ADHD medication. Some felt that stimulants did not have many side effects, and others felt there were a few but couldn’t remember what they were.

Explanation of quality assessment: minor methodological limitations in the contributing studies; moderate concerns about the coherence of the theme with conflicting evidence; partial relevance due to some of the contributing studies being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep or of high quantity. There was a judgement of low confidence in this theme due to the concerns regarding the adequacy of the data and the applicability of the data.

1.5.4.1.5. Theme 5: Schools

Review theme 24: Challenges for teachers

Teachers found it difficult to support children and young people with ADHD. They felt unequipped to do so, having received no training or any information about the condition. They also felt they had a lack of time and resources to fully support children with ADHD. This led to feelings of frustration and helplessness when being unsuccessful in helping or reducing disruptive behaviour in a child with ADHD. In addition, teachers understanding of the prevalence of ADHD across age groups and gender were varied and limited.

Explanation of quality assessment: moderate methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to some of the contributing studies being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not sufficiently deep or of high quantity. There was a judgement of low confidence in this theme due to the concerns regarding the adequacy of the data and the methodological limitations.

Review theme 25: Teachers’ attitudes

Teachers’ attitudes towards ADHD impacted on the support that children received. Some had negative opinions on the causes of ADHD, feeling that it was due to poor parenting skills and home environment; they often framed this attribution negatively, and felt that if it weren’t for these factors, the child would not have ADHD. In these cases, they felt that diagnoses should not have been given. Attitudes to medication differed; some felt that it was wrong for teachers to want to medicate children to ‘make their job easier’; whereas others felt that medication was useful in doing so. Parents felt that teachers were unsympathetic in their attitudes, and felt that teachers neglected their children as a result. They felt that teachers had a ‘blasé’ attitude towards ADHD, which resulted in their child not receiving adequate help.

Explanation of quality assessment: minor methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to some of the contributing studies being conducted outside of the UK; minor concerns about inadequacy as the evidence is reasonably deep, with some elaborations and examples. There was a judgement of moderate confidence in this theme due to the concerns regarding the adequacy of the data and the applicability of the data.

Review theme 26: Parents’ attitudes

Parents felt that behavioural problems at school were a result of poor teaching methods and impatience with children that were slow at progressing through their work. Parents felt dissatisfied and insulted by teachers suggesting that doctor referrals and medication might be necessary.

Explanation of quality assessment: minor methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to some of the contributing studies being conducted outside of the UK; moderate concerns about inadequacy as the evidence is reasonably deep, with some elaborations and examples. There was a judgement of low confidence in this theme due to the concerns regarding the adequacy of the data and the applicability of the data.

Review theme 27: Communication

Both parents and teachers reported conflict with each other, and difficulties in discussing the child with ADHD. Parents reported communication difficulties with schools and teachers, which resulted in them feeling distressed. When teachers tried to discuss a child’s behaviour with the parents, parents perceived this negatively. Some teachers also found it difficult to discuss children’s behavioural issues with parents, and found that they often had different opinions of the behaviour of the child, compared to that of the parents. Those who did receive support from teachers did not feel that this greatly impacted the child’s behaviour, but it did improve the parent’s peace of mind

Explanation of quality assessment: minor methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to some of the contributing studies being conducted outside of the UK; moderate concerns about inadequacy as the evidence is reasonably deep, with some elaborations and examples. There was a judgement of moderate confidence in this theme due to the concerns regarding the adequacy of the data and the applicability of the data.

Review theme 28: Factors influencing the classroom experience

Children and young people reported the variables influencing how they behaved best in classrooms. Some felt that they learnt best in smaller classes, and found learning support units to be beneficial. They felt that classes needed to be a quiet environment that minimized distractions, such as sitting away from the window and having separate desks. They also described their ‘ideal teacher’. Some found teachers most supportive when they helped to teach them strategies for learning, had patience, and were willing to explain things and motivate children. They also felt that they needed a teacher that was strict and could control the class. They also reported that flexibility with deadlines where necessary was beneficial.

Explanation of quality assessment: minor methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to some of the contributing studies being conducted outside of the UK; moderate concerns about inadequacy as the evidence is reasonably deep, with some elaborations and examples. There was a judgement of moderate confidence in this theme due to the concerns regarding the adequacy of the data and the applicability of the data.

1.5.4.1.6. Theme 6: Services

Review theme 29: Experiences of service use

Some people with ADHD had positive experiences of specialist care, and felt supported by healthcare professionals. Others had negative experiences, with parents reporting long and arduous processes to receive a diagnosis of ADHD. They reported that often, the services referred to were far away, didn’t provide conclusive treatment plans, offered a lack of follow up care, and elicited too many administrative duties to stay on top of.

Use of services also differed in terms of non-pharmacological interventions. Some people felt that non-pharmacological interventions were useful in helping patients to learn coping strategies and deal with the psychosocial burden. The social element of group therapy was also highly valued. However, healthcare professionals found that some families were reluctant to work on the wider psychological factors, instead just wanting the medical intervention

Explanation of quality assessment: minor methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to most of the contributing studies being conducted inside of the UK; moderate concerns about inadequacy as the evidence is not deep. There was a judgement of moderate confidence in this theme due to the concerns regarding the adequacy of the data and the applicability of the data.

Review theme 30: Transition to adult services

Many found delays in referral to adult services, and discontinuation of support and medication upon turning 18. People with ADHD did not feel that their age should impact on the care they received, and felt that child services still provided the support they required.

Explanation of quality assessment: minor methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; high relevance due to the contributing studies being conducted in the UK; moderate concerns about inadequacy as the evidence is not deep or of high quantity. There was a judgement of low confidence in this theme due to the concerns regarding the adequacy of the data.

Review theme 31: Improving treatment pathway

Healthcare professionals suggested parenting programmes would be better implemented if an initial home visit was carried out, to build trust with the parent and to explain how the programme should be used.

Healthcare professionals also felt that parents’ own mental health problems, domestic violence, and low confidence should be recognised and supported by healthcare professionals before referral to parental interventions. They felt it was particularly important to identify and treat depression and ADHD when present in parents.

Explanation of quality assessment: moderate methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; high relevance due to the contributing study being conducted inside of the UK; moderate concerns about inadequacy as the evidence is not deep. There was a judgement of low confidence in this theme due to the concerns regarding the adequacy of the data and the applicability of the data.

1.5.4.1.7. Theme 7: Methods of providing information and support

Review theme 32: Support groups

Parents and people with ADHD felt that support groups would be a useful way of gaining information and support. Parents felt it would be helpful to speak to other parents, and learn ways to manage their children from them. They reported often seeking other parents when they had questions about their condition, or decisions around whether or not to medicate their child. Women with ADHD had a strong desire to have access to support groups to help them to learn about other women’s experiences of having ADHD.

Explanation of quality assessment: moderate methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the most of the contributing studies being conducted outside of the UK; moderate concerns about inadequacy as the evidence is reasonably deep. There was a judgement of moderate confidence in this theme due to the concerns regarding the adequacy of the data and the applicability of the data.

Review theme 33: Written and oral presentation

Parents felt that written detailed information about ADHD would be useful. Other parents wanted concise orally presented summaries of what they needed to know. They didn’t want information to be too technical or too vague.

Explanation of quality assessment: minor methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the contributing study being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not deep. There was a judgement of low confidence in this theme due to the concerns regarding the adequacy of the data and the applicability of the data.

Review theme 34: The Internet

People with ADHD reported learning about their condition by accessing information on internet sites, although they felt direction on which websites to use would be helpful. GPs also took part in an online training course, which made them feel more confident in managing patients.

Explanation of quality assessment: moderate methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the most of the contributing studies being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not deep. There was a judgement of low confidence in this theme due to the concerns regarding the adequacy of the data and the applicability of the data.

Review theme 35: Methods for children

Parents felt that healthcare professionals needed to be careful in their approach to discussing ADHD with children. Patients felt that the term ‘disorder’ should not be used with young children, and that non-medical narratives should be used until the child is older. Young people with ADHD greatly emphasised the need for parents, healthcare professionals and teachers to assure them not to be ashamed of their symptoms or diagnosis. They also emphasised the need to not speak about the condition negatively.

Explanation of quality assessment: moderate methodological limitations in the contributing studies; minor concerns about the coherence of the theme with nothing to lower our confidence; partial relevance due to the most of the contributing studies being conducted outside of the UK; moderate concerns about inadequacy as the evidence is not deep. There was a judgement of low confidence in this theme due to the concerns regarding the adequacy of the data and the applicability of the data.

1.5.5. Qualitative evidence summary

1.5.5.1. Theme 1: Diagnosis

Table 10

Summary of evidence.

Table 11

Summary of evidence.

Table 12

Summary of evidence.

Table 13

Summary of evidence.

1.5.5.2. Theme 2: Challenges for people with ADHD

Table 14

Summary of evidence.

Table 15

Summary of evidence.

Table 16

Summary of evidence.

Table 17

Summary of evidence.

Table 18

Summary of evidence.

Table 19

Summary of evidence.

Table 20

Summary of evidence.

Table 21

Summary of evidence.

Table 22

Summary of evidence.

1.5.5.3. Theme 3: Challenges for parents

Table 23

Summary of evidence.

Table 24

Summary of evidence.

Table 25

Summary of evidence.

Table 26

Summary of evidence.

Table 27

Summary of evidence.

Table 28

Summary of evidence.

1.5.5.4. Theme 4: Healthcare professionals

Table 29

Summary of evidence.

Table 30

Summary of evidence.

Table 31

Summary of evidence.

Table 32

Summary of evidence.

1.5.5.5. Theme 5: Schools

Table 33

Summary of evidence.

Table 34

Summary of evidence.

Table 35

Summary of evidence.

Table 36

Summary of evidence.

Table 37

Summary of evidence.

1.5.5.6. Theme 6: Services

Table 38

Summary of evidence.

Table 39

Summary of evidence.

Table 40

Summary of evidence.

1.5.5.7. Theme 7: Methods of providing information and support

Table 41

Summary of evidence.

Table 42

Summary of evidence.

Table 43

Summary of evidence.

Table 44

Summary of evidence.

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