Co-designing guidelines for involving adults with DLD in research

Dr Lucy Rodgers, paediatric SLT and academic, shares how support from an RCSLT CPD grant enabled her to work together with adults with developmental language disorder (DLD) to co-design recommendations for researchers.

 

As part of my PhD, I developed a new pre-school intervention with a wonderful steering group of professionals and people with lived experience. This group included an adult with DLD, who had accessed pre-school speech and language therapy services as a child. While working with them, I realised I was initially under-prepared to support them to participate fully in the steering group and found myself learning as I went along.

My visiting Postgraduate Scholarship with Dr Michelle St Clair at the University of Bath gave me the opportunity to build on this experience. Together with adults with DLD, I set out to co-design clear recommendations that would help researchers involve people with DLD in research more effectively. Rather than relying on professional assumptions, I wanted these recommendations to be shaped by the lived experiences of the people they are intended to support. Having a RCSLT CPD grant enabled me to recruit four people with DLD to support with the project and suitably pay them for their time and expertise (i.e. insights from their lived experiences of taking part in DLD research).

 

Creating a co-design group

The group first completed a survey to share their experiences of taking part in research, before working with me through a series of online meetings to develop and refine the recommendations.

Throughout the process I was reflecting and realised, it was not just about practical communication strategies. As an SLT, my instinct is naturally to focus on the strategies that can facilitate participation. However, what strongly came through the survey and our discussions was the importance of building rapport.

One group member commented that it helps to have “friendly, approachable researchers”. For me it raised the question: if the researchers are not approachable, how can the person feel safe enough to advocate for strategies or adjustments in the first place?

Building rapport may seem like a ‘soft’ skill, but actually it could make or break a person’s experience of taking part in research.

A simple way to build that relationship is to meet with participants before the research begins. We should not underestimate the importance of resourcing and advocating for this need in our funding proposals.

 

 

Support must be personalised

The final report and infographic from the study, outline practical strategies that researchers can use to support participation. During the co-design process, it struck me how each person taking part required different strategies and approaches despite all of them having DLD.

This was reflected also in the survey responses. One group member said taking part using a computer online “can be easier to understand”, while another explained they found meeting in person more accessible because they could rely on “seeing body language”. This really emphasised to me the importance of asking the person with DLD which strategies and approaches specifically help them, before commencing any research.

 

Barriers are compounded

There are known barriers to taking part in research which any person can face, such as having the time and funds to participate. People with DLD face universal barriers too. For example, group members commented “payment helps”, and “I don’t have much free time, so I am a bit restricted”. However, as the project progressed, I became increasingly aware that these universal barriers are exacerbated by the additional barriers faced by people with DLD. As one group member put it, research can be “really tricky and time consuming”.  For me, this highlights why we may need resources to go over and above what is usually allocated. We can then meaningfully involve people with DLD in research. If we do not advocate for this need in our funding proposals, who will?

 

Developmental language disorder​ – overview​

 

Looking to the future

This project taught me the importance of reflecting on my assumptions, especially when it comes to involving adults with DLD in research. Every person is different, which means support needs to be tailored to the individual. This support will require additional time, resources and skills, particularly for non SLT researchers.

The visiting Postgraduate Scholarship and RCSLT minor grant made this work possible by giving me the time and opportunity to work directly with adults with DLD and co-design recommendations grounded in lived experience. I hope these recommendations help future researchers make their work more inclusive and encourage others to use CPD funding to develop projects that improve research and practice. By applying recommendations which are grounded in lived experience, researchers can take one step further towards making research participation fully inclusive for people with DLD.

Visit the co-design team’s page on the Open Science Framework for the co-designed recommendations.

 

 

RCSLT CPD Grant

Are you an SLT looking to grow your skills?  RCSLT offers CPD grants of up to £800 for applicants seeking to benefit the profession of speech and language therapy and to enhance their own professional development. The RCSLT CPD Grant, is designed to assist SLTs in continuing professional development. Grants can cover costs of up to £800 can be offered for attending conferences, short courses, conducting research, or purchasing specialist resources.

Take the next step in your learning journey, apply for a RCSLT grant today.