By Ruth Northway, Professor of Learning Disability Nursing, University of South Wales @NorthwayRuth
This year’s Learning Disability Awareness Week theme1 was ‘creativity’ and I want to reflect on the need for creativity to promote the inclusion of people with learning disabilities in research. Historically the relationship between people with learning disabilities and research has not always been an easy one and at times they have been vulnerable to exploitation and harm in the name of research. One such example is the (in)famous case of the Willowbrook State School in America where children with learning disabilities were deliberately infected with hepatitis as part of ‘research’ to develop a vaccine2. As well as the harm caused by such an intervention, concerns were raised as to whether parents who gave ‘consent’ for their children to participate in this experiment actually gave valid consent.
Of course, everyone, including people with learning disabilities, needs to be protected from harm arising from research but additional safeguards may be required due to potential challenges regarding capacity and consent3. However, this can mean that all people with learning disabilities risk being labelled as ‘vulnerable’ research participants and hence excluded from participation. This also raises ethical concerns and gives rise to harm.
Not being actively included in research that focuses on your life means your voice and experience are not reflected in that research. It means that the findings and how/ if they are translated into practice may have little or no impact thus bringing into question the value of such research. Not being included in wider research such as (for example) that which focuses on the management of long-term health conditions amongst the wider population, may mean that the challenges you face in managing day-to-day life with that condition are not reflected and the findings may not therefore be generalisable. Unfortunately, both scenarios have all too often been the research experience of people with learning disabilities.
So, as researchers we need to develop ways that we can work in partnership with people with learning disabilities to support their inclusion in both learning disability specific research and in wider research regarding health and well-being whilst also safeguarding against exploitation and other harm4,5. This is where the need for creativity comes in.
The concept of reasonable adjustments set out in the Equality Act (2010)6 requires adjustments to be made to the way in which services are delivered to ensure equality of access for disabled people. This concept is, however, transferable across to the research context and should challenge us to adjust the ways in which we conduct research to promote inclusion. This may, for example, mean considering changing approaches to data collection. In a recent project undertaken with colleagues, we used an on-line survey to gain data from health professionals, families and carers7. However, we recognised this approach would not facilitate the involvement of people with learning disabilities and therefore adapted our approach. We conducted focus groups with people with learning disabilities and instead of asking participants to rank items on a scale in terms of importance (as we did in the survey), we used a card sorting exercise and discussion to identify those items of most importance to them.
Capacity to consent (a concern for many researchers considering research with people with learning disabilities) can be influenced by how the information is presented to potential participants. A very detailed participant information sheet using complex language and healthcare ‘jargon’ is unlikely to be understood by those with limited literacy skills. However, presenting the information in an easy read format, supported by relevant pictorial images, and taking time to read through the information sheet with participants may support people with learning disabilities to provide valid consent. (For guidance see ‘How to make information accessible’8).
A further point to consider is that the term ‘learning disabilities’ applies to people with a wide range of strengths, abilities and needs. Those with what are termed ‘mild learning disabilities’ are often not known to specialist learning disability services and therefore all researchers are likely to encounter such participants when recruiting without realising this. In the context of the Equality Act (2010) the duty, to make reasonable adjustments is an anticipatory duty. In other words, services are proactively required to ensure they are in place rather than just reacting to individual requests. Perhaps we should, therefore, be taking a similar approach in the context of research and develop easy read materials as a matter of course – this would also assist many other groups of people who may have challenges in terms of literacy and comprehension.
Many people with learning disabilities want to participate in research and with the right support and adjustments can do so. Working in creative ways in partnership with people with learning disabilities at all stages of the research process can make this happen. I have learnt (and continue to learn) so much from working in partnership with people with learning disabilities about how I can develop as a better researcher. My challenge to you is to do likewise if you are not already doing so.
- Mencap (2021) Learning Disability Week 2021 #LDWeek2021 | Mencap
- Asylum Projects – Willowbrook State School https://www.asylumprojects.org/index.php/Willowbrook_State_School
- Frankena, T., Naaldenberg, J., Cardol, M., Garcia-Iriarte, E., Buchner, T., Brooker, K., Embregts, P., Joosa, E., Crowther, F., Fudge Schormans, S., Schippers, A., Walmsley, J., O’Brien, P., Linehan, C., Northway, R., van Schrojenstein Lantman-de Walk, H., Leusink, G. (2019) A consensus statement on how to conduct inclusive health research, Journal of Intellectual Disability Research, 63 (1) 1 – 11
- Northway, R., Howarth, J., Evans, L. (2014) Participatory research, people with intellectual disabilities and ethical approval: making reasonable adjustments to enable participation, Journal of Clinical Nursing, 24, 573 – 581
- Equality Act (2010) Equality Act 2010 | Equality and Human Rights Commission (equalityhumanrights.com)
- Improvement CYMRU – Health Profile https://padlet.com/ImprovementCymru/healthprofile
- Change (2016) How to make information accessible – a guide to producing easy read documents https://www.changepeople.org/getmedia/923a6399-c13f-418c-bb29-051413f7e3a3/How-to-make-info-accessible-guide-2016-Final)