The future for research in intellectual disabilities

Abstract

The topics of research papers published in JIDR are diverse. This is largely because the focus of JIDR is on a particular group of people rather than specific types of illnesses, as is the case with purely medical journals, or on research within one academic discipline. In contrast to what is the case for many academic journals JIDR deliberately sets out to publish peer-reviewed findings from across a range of disciplines addressing, many and varied topics relevant to people with intellectual disabilities (ID). We do this through the general editions of the Journal, the specialist mental health editions, and the special editions with invited editors. The wide diversity of research that characterises the field of ID was well-illustrated at the recent 3rd European IASSID conference held in Rome in October 2010. There were eleven themes, ranging from ageing to quality of life, from the biological and bio-behavioural, to education, empowerment, families and ethics and many more (see JARID 2010; 23, volume 5 for abstracts). As an individual the dilemma at such meetings is which sessions of the various parallel themes to attend – those areas of scientific endeavour that are familiar or, instead, whether to step into unknown territory. The tension is keeping up-to-date in one's own fields of research, and, at the same time, engaging in other areas of potential relevance. Sometimes the greatest conceptual advances are made by making connections between different research perspectives, identifying new technologies not previously considered, comparing disparate ideas or using novel approaches to address well-recognised problems. If those of us working in the field don't step beyond our comfort zone in this way, others outside of ID are certainly unlikely to. In many circumstances the complexity of research in ID requires interdisciplinary collaborations. At the IASSID conference there were informal discussions on familiar topics such as the balance of biological versus sociological research, on the role of user engagement in research, and applied versus fundamental research, and much more. Firm positions were held and, for some, compromise was not possible; for others, there was the recognition that different perspectives and more nuanced approaches were needed and were to be valued. However, despite some rigidities there is a strong sense that the field of ID has clearly moved forward with a willingness to embrace different theoretical perspectives as illustrated by the title of the conference –‘Integrating biomedical and psycho-social-educational perspectives’. With such complexity the challenge that we then face in ID is the integration of knowledge from disparate studies in a manner that advances our understanding and ultimately informs policy and practice. The transfer, evaluation, and use of knowledge from multiple sources to effect change is perhaps the greatest challenge of all. What then of the future? Research funding, not easy at the best of times, will undoubtedly become harder to obtain. ‘More is expected from less’ is the phrase increasingly used in these economically problematic times. Priority setting is therefore likely to be necessary, and there may be a focus on funding research that is thought likely to bring demonstrable cost benefits for the population as a whole. Such a focus may disadvantage minority groups, such as people with ID, and in particular, those sub-groups within ID, for example, people with specific syndromes or those with profound or multiple disabilities. At the same time, in ID we must maintain and grow what is a fragile research infrastructure and encourage the very best academics to be interested in this area of study. These are daunting tasks. In many countries there are committed and skilled interdisciplinary research groups that are active and publishing and also contributing directly to changing practice in their own countries and beyond. Certainly in the UK research funding tends to be increasingly concentrated around such centres of expertise. Whilst there are benefits to such an approach, research in ID is often only possible if strong partnerships between individuals and organisations are in place and research is seen clearly as an essential, valued, and respected activity. What then are the main challenges? First, as research funding becomes tighter it will be necessary to identify the main research priorities and also ensure the development and maintenance of the necessary academic and service partnerships that can support such research; and secondly, we must ensure that the new knowledge generated by research is disseminated and used. For many countries their research priorities are likely to include issues relating to demographic changes and the ageing populations of people with ID, and also the high costs of social support for some groups of people, especially those with additional challenging behaviours. Clear differences exist between countries in the way that health and social support services for people with ID are funded, structured, and managed – given this, how might services for people with ID be best designed? How should the skills of the workforce be maintained, and can we marry positive policy aspirations and the wishes and aspirations of individuals with ID and that of their families with the realities of the economic and welfare climate? What are the ‘value added improvements’ that flow from this new knowledge and its application in practice? The discipline of health economics is here to stay! Given this likely emphasis on applied research, how can we be sure that advances in fundamental research within ID are maintained? Here again the case for interdisciplinary research studies is very strong. For all of us working in the field we need to be clear as to what problems are potentially tractable given the research methodologies and technologies that exist, and those that may be intractable at this point in time. In this regard decisions about research priorities should not rest with any one group of people, rather research ideas should emerge from discussions about the priority issues and what is possible and requires a research approach. Not everything does and much may already be known but not understood or not applied! Knowledge transfer was the focus of two workshops at the IASSID meeting in Rome facilitated by Ivan Brown. The presentations and discussions in these workshops highlighted the major challenges that exist, particularly because of the complexity and interdisciplinary nature of the field. How is new knowledge transmitted, interpreted, and used both within the research community and beyond? How can there be some degree of shared understanding across the different groups? We need to ensure that the research itself is robust and soundly based in established and accepted theory. We should encourage conceptual, policy, and briefing papers that integrate relevant bodies of knowledge applied to a specific topic. Conceptual papers may include philosophical and legal analyses, sociological and biological perspectives, and psychological and developmental theories. Policy papers should seek to interpret research findings, drawing out the implications for commissioners and providers of services. In this regard, with every research project, we need to be much more aware who the audiences for the findings will be. Are they clinicians, commissioners of services, people with ID and their families, politicians and policy advisors, researchers, support organisations, and/or support workers etc? In the case of clinical studies, initial fundamental research may lead to applied research which in turn results in the identification of new interventions and the development of best practice guidance by professional bodies. Selected examples of such reports include: Dementia and people with learning disabilities, 2009, Best Practice guidance developed jointly by the Royal College of Psychiatrists and the British Psychological Society; Consensus guidelines into the management of epilepsy in adults with ID by Kerr et al.; (JIDR 2009; 53: 687–694); and Raising our sights: services for people with profound intellectual and multiple disabilities, Mansell, J., 2010, Department of Health. These reports have been informed by research, some are interdisciplinary and international, but all include the considered opinions of acknowledged experts who have the skill to distill and integrate findings. Finally, from a very different perspective, it is instructive to reflect on how the tragic and likely premature deaths of six people with ID in the UK reported by the UK Charity ‘Mencap’ (see Death by Indifference, Mencap 2008; Healthcare for All an independent Report by Sir Jonathan Michael, 2008; and Six lives: the provision of public services to people with learning disabilities, the results of an investigation by the Parliamentary and Health Service Ombudsman, HC 203-1, 2009) was able to mobilise a powerful response from Government. A specialist ID Health Observatory has been established and a confidential enquiry into avoidable and premature deaths of people with ID is underway – both funded by the Department of Health for England. The issue of the health inequalities of people with ID had, however, previously been established (as summarised in the subsequent Michael's Report) but this Mencap report was able to bring to everyone's attention certain issues that no amount of research published in peer review journals had been able to. What the media and Government choose to select for attention is not easy to predict but national and international scientific bodies will need to become more aware of such issues and learn from strong third sector organisations. The message for the future is to build on the inter-agency and interdisciplinary networks and expertise that exist, to be willing to explore new ideas and research technologies developed elsewhere and to bring them into this field, and to be clear how new knowledge derived through research is targeted and is to be integrated with existing knowledge in a manner that advances understanding and may lead to informed change in policy and practice. To end, I would like to thank the editorials assistants, Sue Hampton Matthews and Lorna Rouse; my editorial colleagues, Anna Cooper, Chris Oliver and Jan Blacher; Shoumitro Deb and Kathy Lowe, book editors; and Alison Gridley and Qingwen Li, from Wiley Blackwell for all of their support and thank you, the readership, for submitting papers, and for subscribing to, and reading JIDR. Best wishes for 2011.