The ADHD Voices (Voices On Identity, Childhood, Ethics and Stimulants) report was published yesterday and received a significant amount of press coverage. The outcomes of this work are a 46-page report and 18-minute video, that aim to inspire a fresh public conversation about the ethics of Attention Deficit/Hyperactivity Disorder (ADHD) diagnosis and stimulant drug treatments like Ritalin and Adderall.
The study has been led by Dr Ilina Singh from the Department of Social Science, Health & Medicine at King’s College London, and funded by the Wellcome Trust. Dr Singh and her team interviewed children and their families from the UK and US to find out what they think of the ethical and social issues surrounding this often controversial illness. They focused particularly on medication, to try and find out more about what the children taking drugs like ritalin actually think about how it affects them.
151 families took part in the research (82 from the UK and 69 from the US) and 3 different groups of children were interviewed:
- Children who were taking stimulants for a diagnosis of ADHD
- Children who had a diagnosis of ADHD but were unmedicated
- Children without a psychiatric diagnosis
The participants’ ages ranged from 9 to 14 years. Overall, 63% of the participants were aged between 9-11 years. The mean age was 11.2 overall. The mean age was slightly higher in the UK (M=11.41, SD=1.5) than in the US (M=10.87, SD=1.6) and this difference was significant (p<.05).
There were lots more girls included in the US sample (39.1%) than in the UK (19.5%) and lots more black children in the US sample (23.2%) than in the UK (3.7%), although the low number of African-American children in the study make the findings preliminary and subject to further research. The average child in the VOICES study was an 11 year old, lower-middle class, white boy.
The study participants were broadly similar in terms of the severity of their illness, except that diagnosed UK children scored significantly higher on the Conners’ Oppositional scale than participants in the US (63.1% and 56.7%, respectively, p<.05).
Four female researchers conducted the 1-hour interviews, mostly in clinical settings, which also involved parents and caregivers. The interviews with children focused on four overlapping areas:
- Behaviour
- Brain
- Medication
- Identity
Across four contexts:
- Home
- School
- Doctor’s office
- Peer group
The researchers incorporated drawing, a vignette, sentence completion tasks, standardised pictures and a sorting task into the interview to ensure that children were given the opportunity to tackle a set of complicated issues using a variety of skills and techniques.
The conclusions of this study are:
- Children should be seen as developing moral agents who aspire to make good decisions, to be in control of their behaviour, and to take personal responsibility for their behaviour
- Stimulant medication does not compromise children’s moral development; in fact it can support children’s capacity for moral decision making
- Ethical solutions to children’s behavioural difficulties address the biological and the social dimensions of these difficulties. No child should be diagnosed and medicated because it is cheaper or more convenient than providing adequate social or educational resources
- An ethical treatment approach to ADHD supports the child as a team member with a voice in the process of medical decision-making. This process should openly acknowledge local values and expectations of children’s behaviour, achievement and performance
The qualitative approach followed in this study was supported by quantitative analysis of the data gathered. It’s a novel approach that makes sense; conducting the research with children, not on children. The authors have used their funding well to produce an accessible study report and innovative video that presents the results in an engaging and entertaining way.
Links
Singh, I. VOICES Study: Final Report (PDF). 2012.
[Note: before downloading the report, please note that it is 47MB and will be slow to download on rickety NHS Internet connections]
Printed copies of the full ADHD Voices report and DVD can be obtained from contact@adhdvoices.com
Hmm… cocking a serious eyebrow at this. When I was a kid I worked from the assumption that grown-up doctors would prescribe effective treatment for any condition I had. I may have been a developing moral agent who aspired to make good decisions, but I was working on the assumption that medication always worked, because, in my experience of medicine to that point, it had been. Also, am I wrong in thinking that participation by 155 families seems like quite a small sample?
Perhaps it’s just that I know that giving kids speed is a growth “industry” and can’t help having a cynical take on it.
Hi Matt,
Prescribing effective treatments and giving people medication that always works are two very different things. Most commonly prescribed psychiatric drugs (and indeed talking treatments) have undergone a significant amount of research to show that they are effective, safe and cost efficient. That’s not to say that they’ll work for everyone, indeed in many cases they don’t even work for the majority!
Giving medication to children is always going to be an emotive and controversial subject, especially (as you say) when someone stands to make a profit from the situation. However, shouldn’t we evaluate each case individually by looking at the available evidence and assessing the pros and cons of different treatments for different population groups?
The ADHD Voices Study is an interesting one because it puts children at the centre of the research and asks them what they think of the medication they are prescribed. This clearly isn’t the best way to measure the safety and effectiveness of a treatment, but it does provide us with some fascinating insight into the ethical and social dilemmas around medicating young people with mental health problems.
The sample size is certainly not small. It could always be bigger, but in this case it is sufficient for the overall analysis. There are insufficient numbers for reliable sub-group analysis (e.g. African-American children), but the researchers recognise this themselves.
Of course, it’s important to say that this is a survey and qualitative research of this kind is subject to bias. A good starting point for readers interested in finding out more about the advantages and disadvantages of different study designs can be found on the CEBM website: http://www.cebm.net/index.aspx?o=1039
I agree that it’s sometimes healthy to have a default cynical position when viewing research in this field, but it’s also possible to appraise the methodology of research to find out if the authors have done everything they can to minimise bias, as well as finding out whether they have any links to industry. This study was supported by The Wellcome Trust, the BIOS Centre and by STICERD (Suntory and Toyota International Centres for Economics and Related Disciplines), part of the London School of Economics. The authors themselves come from the Department of Social Science, Health & Medicine at King’s College London. You can find out more about them here: http://adhdvoices.com/adhdvoices.shtml
Don’t stop eyebrow cocking cocker, but do keep an open mind to well conducted research.
Cheers,
André
The Mental Elf