Developing resources to facilitate culturally-sensitive service planning and delivery – doing research inclusively with people with learning disabilities

Abstract

Plain English summary(Please see www.Toolsfortalking.co.uk for an easy read summary of the project.) The Tools for Talking are a set of resources that were developed through collaboration between Black, Asian and minority ethnic people with learning disabilities and researchers at the University of Birmingham. The resources were designed to be used by people with learning disabilities and service providers to facilitate culturally-sensitive communication and information sharing, service planning and delivery. They comprise illustrative videos and exploratory activities relating to five topics, namely, culture, activities, support from staff, important people, choices and independence. These topics emerged as important to people with learning disabilities during the 'Access to Social Care-Learning Disabilities' (ASC-LD) study which involved interviews with 32 adults with learning disabilities from Black, Asian and minority ethnic communities. The results of the ASC-LD study were used to develop a set of draft resources which were then co-developed through collaboration with people with learning disabilities and service providers. A 'Partnership event' was convened to involve stakeholders in the development of the resources. This paper describes the refinement of these materials by people with learning disabilities from Black, Asian and minority ethnic backgrounds in cooperation with a range of other stakeholders. Unwinet al. Research Involvement and Engagement (2016) 2:17 DOI 10.1186/s40900-016-0031-1 (Continued from previous page) AbstractBackground Black, Asian and minority ethnic people with learning disabilities face inequities in health and social care provision. Lower levels of service uptake and satisfaction with services have been reported, however, this is largely based on the views of carers. The 'Access to Social Care: Learning Disabilities (ASC-LD)' study sought to explore the views and experiences of social support services among adults with learning disabilities from Black, Asian and minority ethnic communities. Interviews with 32 Black, Asian and minority ethnic adults with learning disabilities were conducted to explore participants' cultural identities, their understanding and experience of 'support'. The views and experiences expressed in the ASC-LD study were used in the 'Tools for Talking project' to develop a suite of resources designed to facilitate culturally-sensitive communication and information-sharing, service planning and delivery through improved mutual understanding between providers and users of services. This paper describes the Tools for Talking project which sought to co-develop the resources through a partnership event.Methods An inclusive approach was adopted to address issues that are important to people with learning disabilities, to represent their views and experiences, and to involve Black, Asian and minority ethnic people with learning disabilities in the research process. Partnerships were developed with provider organisations and service users who were invited to a 'Pa...

Is it possible to use interpretative phenomenological analysis in research with people who have intellectual disabilities?

“…A more recent special edition of a journal focussing on qualitative research (Rose & Stenfert Kroese, 2018) has highlighted the growing interest in qualitative research with this group. This includes the involvement of people with intellectual disabilities not only as qualitative research participants (e.g., Larkin, Unwin, et al, 2018;Williams, Thrift, & Rose, 2018), but also as members of the research team (Theodore et al, 2018;Unwin et al, 2016).…”

Understanding the mental health experiences of adult men with intellectual disabilities in Singapore

“…Rose et al (2019) recommend researchers provide additional support when interviewing people with intellectual disabilities, such as having carers or support workers present and (as in the current study) using alternative communication approaches. Resources adapted from Unwin et al (2016) helped to facilitate the discussion and showed that it is possible to actively engage with service users who have limited verbal communication skills. Having activity-based interactions with the researcher/interviewer can help this client group to express themselves more effectively using pictures and symbols.…”

“…The semi-structured interview (Interview Schedule) was enhanced by the use of a range of techniques based on “Tools for Talking” adapted from Unwin et al (2016). This set of resources was chosen as the foundation for the development of the interview schedule with additions based on previous research with an intellectual disability population as well as a number of discussions between the authors.…”

What Are the Experiences of People with Neurodevelopmental Disorders Receiving Outpatient Mental Health Services in Singapore?

“…The interview schedule utilized resources from "Tools for Talking" (Unwin, Larkin, Rose, Stenfert Kroese, and Malcolm (2016), developed for people with ND, specifically those with ID. Activities chosen from "Tools for Talking" allowed participants to talk about their relationships with their family members and friends, as well as identifying ideal attributes of mental health professionals and providing views about the mental health services.…”