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

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

Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities

Abstract Background Health research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts. Objective The aims of this narrative review are to identify, quantify and summarize (a) the conceptual foundational principles of patient stakeholder engagement in research and (b) best practice activities to support these efforts. Search Strategy, Inclusion Criteria, Data Extraction and Synthesis We accessed a publicly available repository of systematically identified literature related to patient engagement in research. Two reviewers independently screened articles to identify relevant articles and abstracted data. Main Results We identified 990 potentially relevant articles of which 935 (94.4%) were excluded and 55 (5.6%) relevant. The most commonly reported foundational principles were “respect” (n = 25, 45%) and “equitable power between all team members” (n = 21, 38%). Creating “trust between patient stakeholders and researchers” was described in 17 (31%) articles. Twenty‐seven (49%) articles emphasized the importance of providing training and education for both patient stakeholder and researchers. Providing financial compensation for patient stakeholders’ time and expertise was noted in 19 (35%) articles. Twenty articles (36%) emphasized regular, bidirectional dialogue between patient partners and researchers as important for successful engagement. Discussion and Conclusions Engaging patient stakeholders in research as partners presents an opportunity to design, implement and disseminate patient‐centred research. This review creates an overarching foundational framework for authentic and sustainable partnerships between patient stakeholders and researchers