Including the voices of people with Learning Disabilities: A 2019 IASSIDD Roundtable

The annual International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) Conference is an opportunity for researchers across the world to collaborate and share new knowledge in intellectual disability health research. The Research Voices team were given the opportunity to host a roundtable discussion at IASSID, which we saw as an opportunity to invite feedback on inclusive research from a wide range of international perspectives.

The roundtable included individuals from a range of backgrounds including people who are participants and champions of inclusive research and researchers with an interest in inclusive research. We had representation from the UK, South Africa, Australia and New Zealand.

The aims of this roundtable were to:

1. Present, in brief, the objectives of the Research Voices Citizens’ Jury

2. Discuss and deliberate on issues associated with the inclusion of people with intellectual disabilities in health research, as subjects of research and as collaborators in the research process.

After an introduction and a short presentation about the Research Voices Citizens’ Jury Project, we opened up to lively discussion about inclusive research in practice using prompt questions to promote debate. The main discussion points from this roundtable are described below.

Question 1: How do the priorities of people with intellectual disabilities inform health research?

The group discussed the complexity of defining research priorities: with funding often dictating the direction of research. One roundtable participant said “I don’t think that they do” while another participant felt that “We do bring some voices to the agenda” 

However, the group discussed how the need to secure funding is often the key driver for priority setting.  The group also discussed balance in priority setting, as experts by experience may not be the only experts in the picture who can contribute to shaping the priorities of health research. People with intellectual disabilities can work alongside experts in methods and experts from fields of study. The group discussed the need to move away from multidisciplinary groups towards trans-disciplinary groups, which transcend traditional boundaries between partners in research. 

In addition, some roundtable participants said that they felt they did not hear from a diverse enough group of people with intellectual disabilities. People with mild to moderate intellectual disabilities may have more opportunity to participate, while some voices remain unheard. The group agreed that research should be more inclusive of those ‘harder to reach’ voices and emphasized the need to develop methods for more diverse approaches to inclusive research.

Question 2: Do you have examples of good practice in involving people with intellectual disabilities in health research? 

One delegate suggested that perhaps we should look outside of academia and look at great work done in non-governmental organisations around rights based issues and examine how these other groups are developing opportunities to talk about health and research.

One participant discussed the format of her group’s approach to inclusive research. The group meets regularly to identify research topics and pairs co-researchers with disabilities and without to work together. Another delegate spoke about the success that they had with inviting disabled facilitators to run events and felt that trust was developed through that mutual experience.

Question 3: What are the practical barriers to including people with intellectual disabilities in the early stages of the research process?

A core theme in this discussion was funding. Finding the funding to add in the additional time and resources needed to make research inclusive can be challenging. The Research Voices project team talked about the challenge of writing funding applications that felt like ‘jelly’, because they did not want to predetermine the work before people with intellectual disabilities had the opportunity to shape it.

Funding can also prevent participation of people with intellectual disabilities. One international delegate gave the example of how a shift from state to federal funding for support organisations affected co-researchers’ ability to take part in research.  Moving from state to federal funding for support organisations meant that individuals could not access the support they needed to continue being co-researchers. Finding sponsorships and grants to support participation can be challenging in this context. 

Another practical barrier identified was the role of other people, such as support workers and family members in the research process. Support workers and family members may influence the individuals taking part, and contribute to group dynamics in unforeseen ways. The group talked about the struggle of finding support workers who could take on the role needed, and then not being able to guarantee that these same staff members could attend all of the meetings needed and support the person through the whole process.

The discussion also identified challenges in recruiting a diverse and representative range of people with intellectual disabilities, often finding they were hearing from the same group. People with profound and multiple intellectual disabilities (PMLD) were identified as lacking a voice in health research, and the group discussed the question of including parents as proxy, as they may be best placed to represent their child’s needs and preferences. A challenge of the Research Voices methodology is that it doesn’t allow for proxy representation, and this brought up the question of whether these methods were not flexible enough to include a wider range of voices.

Question 4: What tools and supports might help overcome these?

The group discussed the importance of good quality facilitation, which could take many forms. For example, having co-facilitators with intellectual disabilities could support more ownership within the group. One delegate discussed their experience of having disabled people facilitate and support groups for other disabled people and noted that shared experience can be meaningful for relationship building.

Some of the discussion around facilitation was about how to address bias in facilitators. For example, having people in the role of ‘observers’ may mean there is a more objective view of a group discussion. Equally, reflexive practice such as a researchers’ diary was suggested as supporting researchers to acknowledge how their bias was impacting on their work.

A discussion emerged around time, and how much time projects need to support real inclusion. The Research Voices project is an 18-month project. Some delegates felt that might not be enough time, while others felt it was sufficient.

A discussion point was whether we would get the most from people with intellectual disabilities if we use group engagement as a default approach. Some voices could be lost in this process, and having the option of using one to one conversations could make sure that quieter voices are heard in the process.

Tools to manage group dynamics were seen as important, as well as channels to share best practice approaches. However, it was also noted that challenges in group dynamics are prevalent across all groups, and that the challenge in group dynamics is not an intellectual disabilities specific experience.

Following the roundtable, one participant sent an email that explained how using a robust process for research selection and ethics is important: 

“The research questions are decided by the people with learning disabilities/intellectual disabilities. First, topics are decided by the people with disabilities and the topic that gets the most votes will be the topic that is chosen to undertake the research. All research is approved by the human research ethics committee and if the human research ethics committee does not approve the research the research cannot be undertaken…Nothing can be changed after the human research ethics committee has approved the research.”

Question 5: In your experience, how does the inclusion of people with intellectual disabilities in research enhance research outcomes/impact?

One participant noted that inclusive research may yield different results:

“You will find that the outcomes from the research when done by a person with LD - your analysis and findings will be much more different than with a non - disabled researcher.”

One participant thought that by including people with intellectual disabilities in the process, researchers could harness the natural skills and strengths of people with intellectual disabilities and build in additional training or support to develop new skills.

Question 6: If you were part of the Research Voices Citizens’ Jury, what question would you put forward?

The group was invited to put forward questions they would want to be discussed by a Citizens’ jury of people with intellectual disabilities. Below are those suggestions:

1. What is the wider impact of informed and meaningful engagement in health (ie. cancer treatment decisions, experience of GP appointments?)
   
   
2. How can we match theoretical knowledge and practice and what do we need to do to disseminate and implement all of this knowledge? How much difference does research currently make to the lives of people with intellectual disabilities?
   
   
3. How do you create spaces in government policy that are appropriate for the input of people with intellectual disabilities in those spaces - what would that person need?
   
   
4. Questions of psychosocial research including sadness/happiness/loneliness/wellbeing/psychological state - do you feel good about your life? “What is wellness for this group?”
   
   
5. How can I take risks and make choices without losing my safety net?
   
   
6. You want to know about health research? My voice is the last to be asked? Why am I the last one to be asked to share my voice?
   
   
7. Should people with intellectual disabilities be involved in health research?
   
   
8. What do Citizens in the general population know about health and wellbeing and how does that translate to people with LD? Do people with LD know about health and wellbeing but don’t act on it?