Working alongside older people with a learning disability: informing and shaping research design

Abstract

Accessible summary This paper is about working with people with learning disabilities to develop a research (or ‘finding out’) study. We worked with people from Reach, a group–advocacy project, which is part of Assist in Staffordshire, to write clear and simple information sheets and consent forms to help people with learning disabilities and dementia to participate in a research study. We also worked with members of Reach to create appropriate, clear and simple interview questions to ask people with learning disabilities and dementia about their experiences Working alongside people with learning disabilities helps to ensure the work is fit for purpose. Abstract Background: There has been an increase in inclusive research in the learning disability field; however, this has not been reflected within learning disability and dementia research, where little is known from the perspective of people with learning disabilities. This paper will define inclusive research, explore reasons for the dearth of inclusive dementia research, and identify the challenges of conducting dementia research involving people with learning disabilities. Materials and Methods: Examples of working with people with learning disabilities to develop elements of a PhD research study will be detailed and critically discussed. Results: These experiences aided the creation of accessible material about dementia for a PhD research study. Subsequently, this helped to overcome challenges of communication within the research study and helped to promote the participation of people with learning disabilities and dementia. Conclusion: Sharing these ideas about how we worked together will help others who are seeking to engage and achieve more inclusive research practices with marginalised populations.

The added value of inclusive research

“…A number of inclusive research projects have sought to use co‐researchers with intellectual disabilities to test ways of reaching people with more complex or severe impairments. Herron, Priest, and Read's () team set out to find ways to engage with people with intellectual disabilities who have dementia. They describe how the co‐researchers helped to create easy access consent forms, and interview questions:

We worked with people from Reach, a group–advocacy project ….

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“…to write clear and simple information sheets and consent forms to help people with learning disabilities and dementia to participate in a research study.We also worked with members of Reach to create appropriate, clear and simple interview questions to ask people with learning disabilities and dementia about their experiences. (Herron et al., , p. 261)…”

“…We also worked with members of Reach to create appropriate, clear and simple interview questions to ask people with learning disabilities and dementia about their experiences. (Herron et al., , p. 261)…”

“… The importance of accessing and understanding life stories in developing professional practice and giving good support (Cresswell & Tuffrey‐Wijne, ; Ledger, ). Use of film and video to give people who cannot read fluently access to data (Williams et al., ). Use of cameras to enable people to record their daily experiences (Povee et al., ). A discursive rather than formal interview approach to help put people at their ease (Dias et al., ). Critical review of questions and information by people with intellectual disabilities to facilitate access by others with intellectual disabilities (Herron et al., ). …”

Developing a training course to teach research skills to people with learning disabilities: “It gives us a voice. We CAN be researchers!”

“…There have been numerous published accounts of research studies and research processes that involved people with learning disabilities as co‐researchers (Brookes et al., 2012; Herron, Priest, & Read, 2015; Holman, 2013; Nind & Vinha, 2012; O'Brien, Mcconkey, & García‐Iriarte, 2014; Salmon, Barry, & Hutchins, 2018), including accounts written or co‐written by researchers with learning disabilities themselves (Flood, Bennett, Melsome, & Northway, 2012; Schwartz & Durkin, 2020; Tilly, 2015; White & Morgan, 2012; Williams, Ponting, & Ford, 2015). This journal has been at the forefront of promoting and publishing papers about inclusive research.…”