#ADHD #RichmondUponThames adviser/coach Val Ivens writes in @ADHD_Hayward about role of Support Groups
Raising a child with any disability is something that only parents who have experienced it can really understand. That is not said lightly, nor is it intended to diminish the genuinely serious task of parenting in general, but it does add an extra dimension. I have worked with children and young people with a diagnosis of attention deficit hyperactivity disorder (ADHD) and their families for nearly 20 years, and their stress and exhaustion is palpable. ‘Is it my fault?’, ‘Why me?’, ‘I must be a bad parent.’ Add to that the exhaustion of actually raising a child who generally cannot start a task, stay on task, finish a task, fidgets endlessly, zones out, forgets instructions (regardless of countless reminders) is usually late, cannot get up in the morning, loses books and sports kit and is often constantly on the go – if not physically, then mentally and verbally. The self-blame game goes on and on. Typically, up until a formal diagnosis, advice will have been arriving thick and fast from all quarters. As so many of our parents from ADHD Richmond support group testify, everyone has an opinion about their child: ‘Give it time,’ ‘She needs a better routine’, ‘She’s hungry’, ‘She’s thirsty’, ‘She’s hot’, ‘She’s cold’, ‘He’s the eldest’, ‘He’s the youngest’, ‘Well he’s the middle child’, and classically ‘Ah, well, he’s a boy.’ Eventually, a diagnosis can come as a huge relief, but what next?
Experience of special needs and isolation
Despite having a daughter with a chronic and complex medical condition, support groups were not for me. I was lodged firmly in the medical model, believing only the oracles of Great Ormond Street, having been let down by local services who felt they could not cope with her complex needs. I felt isolated, sad and angry and eventually transformed this negative energy into a passionate determination to ensure she would be well supported. I was fortunate enough to be able to give up my career to help structure and encourage her and inform others about how to best help. Today, she is a thriving and strong testimony to the willpower and resilience of those who come through such adversity. My experience encouraged me to ensure that other parents were not alone, and I started work at a local charity for children with special needs. It was there that I came across ADHD and the parents who felt victimised, blamed, stigmatised and that their children were misunderstood. I felt a real need, not only to support these families, but to represent their collective voice to local service providers with the hope of effecting change and greater understanding.
Support groups could play a pivotal role, not only in supporting families through incredibly challenging times but also by forming a common voice for change. My aim in this article, while accepting that support groups are not for all, is to underline the important role they play and the unharnessed potential they possess. Whether it occurs immediately after diagnosis or at a critical point in a child’s life, a shared experience has significant benefits. My aim is to highlight and galvanise the huge potential and passion of parents to make a bigger difference. To me, this latter part is missing in the national ADHD context and I would like to establish a framework that allows support groups around the country to come together towards a common goal of challenging ignorance and raising awareness. Supporting families, studying the condition, working with young people and working with service providers to bring about understanding and change has been my day-to-day mission ever since.
The hidden ADHD story
Both anecdotally and from evidence-based research, there is no doubt that ADHD leads to conflict and poor cohesion within the family,1 and significant depression, anxiety and stress for parents.2 Children and young people with ADHD may have a higher frequency of behavioural and conduct problems than children without ADHD, leaving a larger than usual burden on families to cope.3 In adolescent follow-up studies of girls, persistent impairments were found in multiple domains, such as peer rejection and academic achievement,4 and an increased risk for developing other psychopathologies, such as conduct disorder or depression, was evident.5 Girls with ADHD are also more likely to be bullied than their peers without ADHD.6 These factors impact on young people’s mental health and in their ability to manage the school day and make and keep friends. The wider family is also impacted, with friends and relations struggling to understand and support what seems like a very difficult child or teen.
We also know that parents feel stigmatised by social groups, and that the effects on social functioning may impact personal relationships with partners, so all too often family breakdowns occur.
The real ADHD – not just naughty kids?
Anyone who has any solid working knowledge about this neuro-developmental condition will roll their eyes at this overused, inaccurate and frankly insulting anecdote that ADHD is just a way of describing naughty kids – it is wrong and that is a fact. Parents and carers have had enough of being stigmatised by poorly researched newspaper headlines screeching about pharmaceutical company profits without understanding the facts. In the UK, the only way to get a diagnosis of ADHD is to see a trained expert – usually a consultant child and adolescent psychiatrist – and reach a diagnostic threshold over a number of niche determined criteria. ADHD has to be considered a life-changing disability that adds serious and sustained impairment to everyday activity. This is no disability featherweight, but a chronic and serious condition.
The complexity of a diagnosis means that one child is rarely like another, causing late diagnosis, confusion and misunderstanding among professionals. In all the time I have worked alongside families and health and teaching professionals, I can honestly say no two children have ever been alike in their presentation of ADHD or mix of difficulty.
Diagnosis and next steps
A clear diagnosis of ADHD helps the person and the wider family too. Anecdotally, we hear there is less blame, a willingness to think again about how they interact with their child and a change in attitude towards others once they have a clear understanding of what the diagnosis actually means.
A coffee and a chat – so yesterday?
So what is the role of support groups, and have they moved on from a shared chat over a coffee? Is there still a place for just meeting and talking in an age when everything is available through an online search? Well, I fundamentally believe there is an absolutely critical role for face-to-face contact.
A recent study examined what parents of children with disabilities and special needs found helpful about belonging to mutual support groups.7 Quantitative data (based on 56 parents from six groups) indicated that members found the groups ‘very helpful’ and were ‘very satisfied’ with the support they received. They also described the groups as high in cohesion, expressiveness, task orientation and self-discovery. An analysis indicated that such support was helpful in three broad areas:
- the sociopolitical, which involved developing a sense of control and agency in the outside world
- the interpersonal, which involved a sense of belonging to a community
- the intra-individual, which involved self-change.
Key benefits were identified as a shared social identity, learning from the experience of others, personal growth (based on confidence and self-esteem), empowerment and psychological health benefits. Studies strongly suggest that parents perceive benefits from peer-support programmes as highly effective, and this is sustained across various types of support and conditions.
Looking at the shared social identity, parents finally found a sense of belonging after other parents had seemed to stigmatise and marginalise them. The story of the cold shoulder at the school gate is a frequent one, as is children not being invited to parties or parents to class gatherings. Yet the ability to share through a support group helped foster a sense of belonging, support and empowerment. This actually enabled parents to feel able to cope better and experience a reduced sense of isolation, loneliness and guilt.
These are very significant findings that provide evidence to back up the things that parents have consistently told us over the last 20 years.8,9
The joy of the support group ethos is its sense of continuity, to be dipped into and out of throughout a family’s journey. There will always be critical times when parents wish to seek out others who have been through a similar experience, and times when things feel more stable. Typically, key times seem to be school transition periods (primary to secondary, puberty, transition to adulthood and beyond school). On some occasions, it was found to be helpful for parents to create smaller (sub)group meetings outside the main support group forum, typically sharing experiences more closely about topical issues and expanding their social and support networks. In general, and for the vast majority of parents and carers, it is a sense of community and belonging that gives them the security of knowing that support is at hand, as and when it is needed.
The support group offer
The group with which I have worked provides support in many forms. Perhaps the most important form is an exchange of useful and practical information. Many studies have found that the exchange of useful and practical information is an important element of support, and many parents also described learning from the experience and knowledge of other parents.10–13 Add to this the chance to just share experiences with other parents on the same journey and with a handful of very experienced professionals covering law, education and coaching, and the value of the group cannot be overstated. In a setting in which parents have access to each other and to knowledgeable experts – either as regular speakers or as the group’s support network – a self-confidence and reassurance starts to develop, empowering them in their conversations with those interacting with their children.
Reports underline the critical importance of social identity – that this sharing fostered a sense of belonging, support and empowerment, and that carers were better able to cope.11,14 Parent mentors give further support by drawing on their own experiences to help other parents gain confidence and offer reassurance.
This support allows parents to gain strength and feel empowered as well as helping them to develop new skills and feel more motivated, affirming their experiences as parents.
Perhaps more importantly, belonging to and sharing these experiences within a group helps parents and carers feel more confident and in control and less alone and depressed, and this in turn brought about an improved relationship with their child.8 With a disability that has challenging behaviour and labile emotions at the centre, such a positive finding cannot be overstated.
Support for each other – is there more?
Perhaps my main driver for writing this article is because I see so much more potential for these parent voices and passions. There are no greater advocates for children and young people with disabilities than their parents, regardless of the disability. We have seen over the past 5–10 years a huge awareness campaign for autism and the very real need for a greater understanding of the condition, culminating in the Autism Act, which has paved the way for teacher training, earlier identification and interventions. I strongly believe that ADHD, increasingly free from its poor press and with brain scanning images confirming the brain development differences, will receive the same national awareness afforded to autism within the next five years. The results would be catalytic in supporting these vulnerable children through school and adolescence, when things can so easily go wrong. The cost to society of a young adolescent routed down a negative path, frequently known to police and the criminal justice system, is huge. The cost of awareness of ADHD and early intervention is a fraction of this and could reduce the amount spent on the criminal justice system in the long run. So yes, this is a rallying call to all of those support groups out there who would like to see a national movement for change. And it won’t be a moment too soon.
There is a strong motivation among support group members to offer others what they have received themselves. Just imagine that operating at a national level.
- Key benefits of support groups are a shared social identity, learning from the experience of others, personal growth, empowerment and psychological health benefits.
- Sharing experiences within a group helps parents and carers to feel more confident, in control and less alone and depressed.
- Support groups have a strong motivation to offer others what they have received themselves.
Declaration of interest
The author declares that there is no conflict of interest.
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