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

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.Abstract Background 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 'Partnership Event'. Collaborators at the partnership event were asked to comment on and evaluate draft resources which included a series of videos and activities to explore topics that emerged as important in the ASC-LD study. Their comments were collated and the tools developed as they suggested. Results Using the results from the ASC-LD study helped to ensure that the draft resources were relevant to service users, addressing topics that were important to them. The partnership event was an effective method to collaborate with a relatively large number of stakeholders. However, the event was resource intensive and required substantial planning to ensure active and meaningful participation. Considerations, such as inviting stakeholders, developing the programme and selecting a venue are discussed. Conclusions The partnership approach has led to the development of a set of five illustrative videos and accompanying activities that address issues that emerged from the collaborative process including: culture, activities, support from staff, important people, choices and independence. These resources are freely available at: www.Toolsfortalking.co.uk. They are designed to be used by users and providers of services, but may also be useful in other settings.