Sheehan, R., Strydom, A. and Hassiotis, A. (2019), "Special issue on challenging behaviour", Advances in Mental Health and Intellectual Disabilities, Vol. 13 No. 3/4, pp. 89-90. https://doi.org/10.1108/AMHID-07-2019-072
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Copyright © 2019, Emerald Publishing Limited
Special issue on challenging behaviour
Challenging behaviour continues to be a common and disabling condition in people with intellectual disabilities. Whether low level and requiring minimal intervention or severe enough to warrant specialist multi-disciplinary assessment and treatment, it presents a significant challenge to community intellectual disability services, and the debate on how to best manage the presentation is by no means concluded. It is within this context that we believe a special issue is still topical and important and the enthusiastic response to our call for articles serves to confirm the relevance to researchers and practitioners alike. The group of papers included in this issue cover a number of clinical and applied methodologies as authors approach the topic from a variety of perspectives.
There is currently no single therapeutic approach or service model that can help all individuals at all times and evidence, particularly around effective services, is poor and/or limited. NICE (2015) guidelines, published in 2015, alarmingly show that recommended treatments for adults with intellectual disabilities do not extend beyond Positive Behaviour Support (PBS). Psychotropic medication continues to be heavily relied upon, despite the additional scrutiny applied to such prescribing and the STOMP agenda led by NHS England. Recommendations for services can read as a wish list of suggestions that may or may not find their way to local implementation (NICE, 2018).
PBS receives much attention in this special issue. Botterill et al. present the results of a qualitative exploration of family carer experiences of PBS and report the importance of taking a flexible and collaborative approach with families if the intervention is to be successful. Both Gerrard et al. (in a quasi-experimental design) and Conway et al. (applying Quality Improvement methodology) show how adopting PBS in routine clinical services might augment efforts to reduce anti-psychotic over-medication.
Enhanced support has been proposed as a factor in the successful maintenance of adults with intellectual disabilities and complex needs in the community (NHS England, Local Government Association and Association of Directors of Social Services, 2015), although the availability is still very much a “postcode lottery”. Two studies (White et al. and Ravoux et al.) describe the development of new intensive support services in UK community psychiatry teams; initial evaluations suggest positive outcomes but larger-scale and longer-term studies are still needed to convince commissioners and determine optimum service configuration and cost-effectiveness.
Increasing evidence attests to the importance and influence of paid carers in psychotropic use for challenging behaviour (e.g. deKuijper and Hoekstra, 2019) and the paper by Sawyer et al. presents a current picture of what Canadian direct support staff know about medication, as well as highlighting their desire for additional training.
On an individual level, challenging behaviour is highly co-morbid and the case reports by Korb et al. demonstrate the intricacies of making the distinction between challenging behaviour and a treatable mental illness such as attention deficit hyperactivity disorder. In-depth assessment and a commitment to a bio-psycho-social formulation are imperative if treatments are to be effective. Finally, interventions can only be as good as the fidelity with which they are implemented. Paulauskaite et al. present a systematic review of the fidelity of psychosocial interventions for challenging behaviour and conclude that improvements are necessary at each step of the pathway, from reporting of intervention fidelity in publications to delivering the intervention in real-world conditions.
It is our view that there must never be a short cut to the basics of assessment and treatment of an adult with intellectual disability who displays challenging behaviour. Possible physical causes should be investigated, the diverse range of diagnostic possibilities should be considered and the relative success or failure of previous treatments must inform decisions that include the person with intellectual disability and families and carers.
The papers in this special issue provide a snapshot of the concerns of researchers, practitioners and family carers with lived experience and we hope that they will provoke debate and reflection, and provide further impetus in the quest for better services and more effective treatments.
deKuijper, G. and Hoekstra, P.J. (2019), “An open label discontinuation trial of long-term used off-label antipsychotic drugs in people with intellectual disability: the influence of staff-related factors”, Journal of Applied Research in Intellectual Disabilities, Vol. 32 No. 2, pp. 313-22.
NHS England, Local Government Association and Association of Directors of Social Services (2015), “Building the right support: a national plan to develop community services and close inpatient facilities for people with a learning disability and/or autism who display behaviour that challenges, including those with a mental health condition”, NHS England, Leeds.
NICE (2015), “Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges (NG11)”, National Institute for Health and Care Excellence, London.
NICE (2018), “Learning disabilities and behaviour that challenges: service design and delivery (NG93)”, National Institute for Health and Care Excellence, London.
About the authors
Rory Sheehan is Doctoral Research Fellow in Psychiatry of Intellectual Disability at University College London and Higher Trainee in North London.
Andre Strydom is Professor of Psychiatry of Intellectual Disability at the Institute of Psychiatry, Psychology and Neuroscience at King’s College London and Honorary Consultant Psychiatrist at the Southwark Mental Health in Learning Disabilities Service.
Angela Hassiotis is Professor of Psychiatry of Intellectual Disability at the Division of Psychiatry, University College London and Honorary Consultant Psychiatrist at the Camden Learning Disability Service.