Transcript
Professor Sven Bölte So, this  is so-called Child Psychology and   Psychiatry Annual Research Review. So,  technically, it’s an invited article,   it’s a narrative scoping review where experts  in the field do a state-of-the-arts overview,   and in this review, the objective was to describe  to the readers what is consensus and what are   the new leads and what are the outstanding  research questions in ADHD research, but also,   practice and society? And the article is quite  rich, when it comes to the scope and the depth   of looking at this area. So it includes genetic  and environmental factors and influences on ADHD,   and the developmental course and co-occurring  conditions, and also, brain processes. And it   was a team effort led by Edmund Sonuga-Barke,  and my contribution was mostly describing the   current evidence and practice and ongoing  discussions in the area of the functional   impact of living with ADHD, including what we call  impairment, quality of life and stigma [pause]. So, the section that I participated in was on  the functional impact of living with ADHD. So,   it concerns what does it mean to live with ADHD  in terms of activities, the social participation   and also, the environmental barriers and  faci – the facilitators and wellbeing? So,   traditionally, we have looked at ADHD mostly from  the perspective of symptomatology or a, kind of,   psychopathology and this section that I worked  with was mostly, kind of, trying to widen this   rather, kind of, narrow view. Because we, today,  want to understand, kind of, what it really means   in terms of all the biopsychosocial aspects of  ADHD and living with the condition. So, it looks   at more the – the focus in this section is on the  real-life issues that matter for people with ADHD   each and every day and also, in the long run. So,  it tackles mostly the impact of ADHD on, kind of,   how you do in school, how you do in leisure, how  you do with peers, how you do in the workplace and   how society encounters you and how you live with  it. So, that’s what the section is about [pause]. There’s quite a lot of evidence in  diff – for different life domains and   the interplay between an individual and the  environment that the individual’s living in,   and these are the major ones family,  social life, school education, work,   leisure. And there’s some specific results  that we know that where we have a risk in   ADHD. For instance, there’s an increased risk  for accidents, an increased risk for gambling,   also for criminality, for teenage pregnancies and  unfortunately, also, to – for premature death.   And these increase in risks can be seen across  cultures and mostly also across the lifetime,   and it is aggravated by the existence  of co-occurring conditions and also,   the existence of somatic health problems. So,  that’s more the aspect of the functional impact. And then, when it comes to wellbeing, we  know that quality of life is low in ADHD   than compared to the general population  and it’s also sometimes lower compared   to other somatic complications and  to other mental health conditions,   and even family members can have – can experience  lower quality of life. So – and interestingly,   when we look at gender differences, sex and  gender differences, we can see that females   mostly have a little bit less of impairment from  the ADHD and we think that mostly has to do with   that they are better at both coping and hiding the  impact of ADHD, but it also comes with a cost. So,   we have more internalising issues in ADHD  in females, such as anxiety and depression. So, we talked about the, kind of, functional  impairment and also, quality of life, and a   third issue is the stigma, which is quite a huge  issue in ADHD, and it’s both a stigma that comes   from society, but also, can be put of – on the  individual, kind of, him or herself, and stigma is   a negative stereotype or a prejudice. Just because  you have a diagnosis or that you are associated   with a certain diagnostic label, and that can be  associated with discrimination. So, self-stigma,   then, is when you, kind of, downgrade yourself,  in view of a certain diagnosis and internalise   stigma, internalise the stereotypes that society  has generated, which can lower your – the respect   for yourself, and this can also appear in  families. So, when – in families who have   children with ADHD, they can maybe also sometimes  have this self-stigma within the whole family.   And we – the other things at the moment that we  discuss in terms of terminology, for instance,   just using the word ‘patient’ when you have a  diagnosis of ADHD, that can also be something   that fuels stigma. So, we also discussioning  terminology quite a bit today [pause]. I would like to start pointing out that I  have a little bit of a bias here, because   that’s a research area that I’m quite engaged  in. So – but we have mostly used diagnostic   systems working with ADHD, so the DSM-5 and the  ICD-11, and these additional medical systems,   and they still dominate how we look at and  deal with ADHD. But there’s now, I think,   an important shift going on that we are trying to  use a more, kind of, biopsychosocial model of ADHD   and this is endorsed by the WHO classification  system, ICF, the International Classification   of Functioning. So, that’s something  that I think is an ongoing development. And consistent with this development, we  also see that we maybe need to redefine   our – the outcomes that we use, for instance, in  intervention studies, where we mostly have used,   kind of, symptom reduction as an outcome.  But for most people with an ADHD diagnosis,   symptom reduction is not particularly important  for many people living with ADHD. It’s more   important to see how an intervention can  positively affect their level of, kind of,   adaptive abilities and their quality of life  and their social participation, and also,   if they can achieve their personally meaningful  goals. So, these are things that are ongoing. Another issue is the vital discussion that we  have around neurodiversity. It’s also, kind of,   a – it’s a paradigm that tries to balance out  the biomedical view of ADHD and in this paradigm,   ADHD is viewed more of a natural and a  neurological variation and an expression   of diversity. So, that’s something that  is an ongoing discussion and finally,   also, we have the issue, where exactly does  impairment begin in ADHD and how is it defined? So, it’s a little bit hard to draw an exact line  and make a cut-off where does ADHD begin in terms   of functional impairment, and where does it end?  And what is due to a person’s dispositions and   what is – and which part of the impairment is more  because society is not approaching an individual   in a balanced and equal way? So, there’s no  real clearcut where ADHD begins in terms of   functional impairment and that’s an issue that  we’re working on a lot at the moment [pause]. Yeah, just – I just mentioned the neurodiversity  paradigm, which it, kind of, indicates a certain   paradigm shift in the way that we look at and  deal with ADHD. And there’s also some claims made   by the neurodiversity paradigm, for instance, that  ADHD is connected to a certain strength, sometimes   also called, you know, superpowers. Kind of, that  there is a huge potential for creativity and huge   potential of energy, and – but at the moment, we  are struggling a little bit with the evidence for   these claims. So, it’s an open question if they do  exist, these specific strengths connected to ADHD,   and if they are really superior to what  we can see in neurotypical development. On the other hand, there’s – it’s no questions –  no question that individual strength do appear in   people with ADHD, this despite their ADHD,  and that we need a more balanced view of   individual strength and challenges in ADHD. So,  I think there’s an agreement that we need a more   strength-based approach to ADHD that is trying  to develop the skills of people and looking more   at opportunities, and not only looking at  deficits and things that do not work out. Then – and the same is also true, not  only for addressing the individual,   but also for looking what the environment can do  to make the lives easier for people with ADHD. So,   how can society better understand ADHD and  accommodate to individual prerequisites of people   and trying to move – re – just trying to remove  barriers that there are? And well, furthermore,   there’s also – also, I’m not exactly clear what  the effect of diagnosis is on stigma. For some   people, a diagnosis key – can be something  positive. For others, receiving a diagnosis   can be even more stigmatising. So, it’s probably  very much dependant on the context and the person,   and we need more research here in terms of  how stigma is perceived and built in ADHD. And then, a question that many people have an  interest in is how sex and gender relates to ADHD,   and what other – if there are any interactions  between ADHD, sex and gender and for instance,   functioning and quality of life, or for –  and for instance, if stigma is differently   developed and experienced by females than  males. And these are open questions that   we are interested in, and I think many  people in society are also interested in.

'Advances in the Science of ADHD: Functioning, quality of life and stigma (Research Article)'.

Duration: 13 mins Publication Date: 12 Apr 2023 Next Review Date: 12 Apr 2026 DOI: 10.13056/acamh.13622

Description

Professor Sven Bölte shifts the focus from the core symptoms of ADHD to a holistic and person-centred view of the condition. Bölte emphasises the importance of understanding ADHD not only in terms of its core symptoms but also in terms of its impact on participation, quality of life, and the stigma associated with it.

Learning Objectives

A. To understand the concepts of functioning, quality of life, and stigma
B. To learn about the state of research regarding functioning, quality of life, and stigma in ADHD
C. To understand the new leads and open questions concerning these concepts in ADHD

Related Content Links

Learning Series: Advances in the Science of ADHD

Paper Link

https://acamh.onlinelibrary.wiley.com/doi/10.1111/jcpp.13696

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Speakers

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