The Health of People with Intellectual Disabilities: Realising the Future Potential Of

The health of people with intellectual disabilities: realising the future potential of all nurses and nursing to reducing health disparities

My first hope is that if you are reading this sentence you are open to the suggestion in the title of this piece that all nurses (whatever their field of practice) have a potential role to play in improving the health and well-being of people with intellectual disabilities. My second hope is that you will read on and by the end both agree with this suggestion and be prepared to contribute to making this potential a reality.

The United Nations Convention on the Rights of Persons with Disabilities (2006) sets out the rights of disabled people to ‘enjoyment of the highest standards of health without discrimination on the basis of disability’ (article 25) and highlights the role of health professionals in the provision of care which is of the same quality as that provided for other members of the population. However, despite the fact that (overall) the life expectancy of people with intellectual disabilities is increasing (Coppus, 2013) disparities in their access to timely, appropriate and effective health care are evident (see for example Emerson et al, 2012). Indeed, in one study it was found that the mean age of death amongst men with intellectual disabilities was 13 years less than their non-disabled peers whilst for women with intellectual disabilities the gap was even greater at a mean of 20 years (Heslop et al, 2013). Furthermore, many of the deaths amongst people with intellectual disabilities in that study were found to be premature and avoidable suggesting that the rights of this group of disabled people to the highest standards of healthcare are not being realised in practice. Whilst the study undertaken by Heslop et al (2013) was based in the United Kingdom similar disparities in health have been noted in many countries (see for example Krahn and Fox, 2014). The question thus arises as to how can future care be improved and disparities reduced and (specifically) what is the role of nurses and nursing in effecting change?

Intellectual disability is a life-long condition which impacts on both intellectual and social functioning (Department of Health, 2001) but the label of intellectual disabilities covers a wide range of abilities and needs. For example, individuals may have severe or profound intellectual disabilities with concurrent physical and/or sensory impairments and complex health needs requiring high levels of support with day to day living. Individuals can also have mild and moderate intellectual disabilities and live independent lives with only minimal support. However, whilst individual health needs vary (as with the wider population) they are all likely to experience additional challenges with having their health needs recognised and met in a timely and appropriate manner. Furthermore, whilst support systems and services vary from country to country all nurses, whatever their area of practice and geographical location, will be involved in identifying and meeting the health needs of this group of people.

My view, therefore, is that globally nurses and the nursing profession potentially have a huge role to play in reducing the health disparities experienced by people with intellectual disabilities. However, to date, this potential has not been fully realised for a variety of reasons. First whilst some countries such as the UK and Ireland provide specialist pre-qualifying courses relating to nursing people with intellectual disabilities, and other countries such as the United States have some post qualifying provision, in other countries there is no such specific educational preparation. In such situations preregistration nursing courses are generic in nature and curricula may pay little or no attention to the specific needs of people with intellectual disabilities (Troller et al, 2016) leaving qualified nurses often reporting that they feel unable to adequately address such needs (Hemm et al, 2015). Second, where there are nurses identified as working specifically with people with intellectual disabilities it has sometimes been assumed that the responsibility for identifying and meeting the health needs of this client group rests solely with them rather than recognising and accepting that whilst the nature of support may vary between those specialising in this field of practice and nurses working in other areas of specialism all nurses have a responsibility in this respect. Finally, the health needs of people with intellectual disabilities have not always been viewed as a priority in policy terms and hence this has impacted on the priority that is afforded them within service development and delivery. Realising the potential of nurses and nursing in relation to reducing the health disparities experienced by people with intellectual disabilities thus presents a challenge for the future development of nursing education, practice and research. This is, however, a challenge that I feel the nursing profession can (and should) respond to.

As I have noted above the educational preparation of nurses to work with people with intellectual disabilities varies between countries and there are long standing debates regarding whether generic or specialist nurse education programmes are most effective. As someone who has undertaken a specialist training and whose area of practice relates to people with intellectual disabilities it could be argued that I have a vested interest in arguing for further development of this specialism. However, to me the evidence suggests that both approaches are required so that people with intellectual disabilities have access to specialist support when that is required but also that all nurses they encounter, in whatever setting, are adequately prepared to recognise and meet their needs in an appropriate manner. This means that the nursing profession needs to have an open and honest debate regarding the rights of people with intellectual disabilities to receive appropriate and effective health care, the importance of all nurses recognising the role they have to play in this process and our understanding of what we mean by ‘generic’ in the context of nurse education. If courses are truly generic then the needs of people with intellectual disabilities would be reflected in the curriculum. However, where generic courses exist consideration of such needs is often absent from course delivery (Troller et al, 2016). Furthermore nurses have identified the need for further education in relation to communicating with, seeking consent from and understanding the specific health needs of people with intellectual disabilities (Hemm et al, 2015).

Nursing curricula are always crowded and concerns may be raised regarding attempts to increase content. I would therefore challenge those responsible for planning and delivery of nurse education to not view the solution as necessarily being to include additional lectures and modules but rather to consider how the needs of people with intellectual disabilities may best be reflected within existing delivery. For example, if a lecture is being given regarding the needs of people with respiratory problems one of the case examples could relate to a person with intellectual disabilities given that rates of respiratory problems amongst this client group are high (Emerson et al, 2012). Similarly if teaching sessions are being held in relation to communication then making appropriate adjustments to ensure accessibility for people with intellectual disabilities could be included. Such inclusion should also occur not only at a prequalifying level but also within continuing professional development courses.

I am not, however, naïve enough to imply that simply stating that such developments should happen will effect the changes needed. Bodies with responsibility for monitoring the quality of nurse education need to have mechanisms in place to ensure that the needs of people with intellectual disabilities are appropriately reflected in actual teaching delivery and not just within curriculum documents. This in turn will have implications for the professional development of nurse educators who may not, themselves, have received any formal education or supported practice experience in relation to working with people with intellectual disabilities. Finally it is important that people with intellectual disabilities themselves as well as their families are actively involved in the development and delivery of nurse education since their experiences and insights will mean that educational programmes are relevant to their self-defined needs.

If these educational developments can take place then I feel this should lay the foundation for nursing practice that more appropriately meets the needs of people with intellectual disabilities across the lifespan. Central to such practice would be enhanced communication skills that encompass awareness of alternative and augmentative communication systems. This would assist with assessment of (for example) pain and other symptoms as well as ensuring that information is provided for people with intellectual disabilities in formats that are accessible to them thus enhancing their capacity to be actively involved in addressing their own health needs. Also, nurses would be more skilled in recognising the need for and making reasonable adjustments / accommodations to care and support so that specific additional needs can be met, patient safety safeguarded, and quality care provided. In addition, nurses would have a good knowledge of the specific health needs that people with intellectual disabilities may experience so that they can be alert to these possibilities when individuals themselves cannot communicate signs and symptoms. Finally, they would have the skills and knowledge to support and advocate for people with intellectual disabilities both within health services and wider care and support provision.

If nursing’s potential contribution to addressing the health disparities experienced by people with intellectual disabilities is to be realised nursing research also needs to embrace this as a priority. In this context I feel that two key developments are required. First there is the need to ensure that people with intellectual disabilities are included in wider nursing research and hence to make sure that such studies are inclusive and reflective of their needs. For example, if new interventions are being trialled for assessment of pressure risk then the sample should include those with intellectual disabilities if the findings are to be generalizable to the wider population (which includes people with intellectual disabilities). This does, however, mean that due attention will be needed to ensure that meaningful consent is obtained, ethical principles are maintained and reasonable adjustments are made. Nonetheless I would urge researchers to remember that excluding key groups of people from research also has ethical implications. It is also important to ensure that there is nursing research that is focused on the specific needs of people with intellectual disabilities so that such needs can be better understood and more effective supports developed. As I know from experience securing funding for such research can be challenging since people with intellectual disabilities form only a small group within the overall population and hence their needs may not be viewed as a priority by research funders. However, it is important to remember and stress that if effective interventions can be found to support people with intellectual disabilities then it is likely that these can then be generalised to promote more effective support for other groups within society who may be vulnerable and/ or marginalised.

If I were to assess nursing’s contribution to addressing the health disparities of people with intellectual disabilities at present I would probably acknowledge examples of innovative and effective practice but overall rate it as ‘must do better’. Yes there are examples of good practice in education, practice and research but there is also the need for much improvement. I have suggested some ways in which nurses and the nursing profession might usefully respond to this challenge and action is required at the level of individual practitioners, educators, regulators and policy makers. Working in partnership with people with intellectual disabilities, their families and other professionals I feel that nurses have the potential to make a significant and transformational difference to the health and well-being of people with intellectual disabilities. Such partnerships need to occur at a local, national and international level and we all have a professional responsibility to take forward this agenda and to work to ensure that people with intellectual disabilities are able to achieve their right to the ‘highest attainable standard of health’ (UN, 2006).

References:

Coppus, A.M.W. (2013) People with intellectual disability: what do we know about adulthood and life expectancy? Developmental Disabilities Reviews, 18, 6 - 16

Department of Health (2001) Valuing People: A New Strategy for Learning Disability for the 21st Century, London: The Stationary Office

Emerson, E., Baines, S., Allerton, L., Welch, V. (2012) Health Inequalities and People with Learning Disabilities in the UK: 2012, Lancaster: Improving Health and Lives

Hemm, C., Dagnan, D., Meyer, T.D. (2015) Identifying training needs for mainstream healthcare professionals to prepare them for working with individuals with intellectual disabilities: a systematic review, Journal of Applied Research in Intellectual Disabilities, 28, 98 – 110

Heslop, P. Blair, P. Fleming, P., Hoghton, M., Marriott, A., Russ, L. (2013) Confidential Inquiry into Premature Deaths of People with Learning Disabilities, Bristol: Norah Fry Research Centre, University of Bristol

Krahn, G.L., Fox, M.H. (2014) Health disparities of adults with intellectual disabilities: what do we know? What do we do? Journal of Applied Research in Intellectual Disabilities, 27, 431 – 446

Troller, J.N., Eagleson, C., Turner, B., Salomon, C., Cashin, A., Iacono, T., Goddard, L., Lennox, N. (2016) Intellectual disability health content within the nursing curriculum: an audit of what our future nurses are taught, Nurse Education Today, 45, 72 – 79

United Nations (2006) Convention on the Rights of Persons with Disabilities, Geneva: UN