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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Involving service users and their carers as equal partners in a project using electronic communication
Susan M Ashby1, Sian E Maslin-Prothero, Amelia C Rout
1Keele University, School of Nursing and Midwifery, Clinical Education Centre, University Hospital of North Staffordshire, National Health Service Trust, Newcastle Road, Stoke-on-Trent, Staffordshire, England, UK. s.m.ashby@nur.keele.ac.uk
Abstract:
This paper presents a research team's experience using a virtual steering group to manage a research project. The main research project was concerned with the evaluation and development of interprofessional working among health and social care staff across primary and secondary care in the United Kingdom, with a focus on older people receiving intermediate care. Intermediate care is a service aimed at preventing unnecessary hospital admission; supporting early discharge from hospital; and reducing or delaying the need for residential care in the community. Intermediate care covers multi-agency and interprofessional working across the continuum of care. We examine one aspect--the use of a virtual steering group, which is an innovative approach aimed at facilitating user and carer participation in the research in a supportive and less intimidating way. The research team includes academics, practitioners, older people and carers, and representatives from the voluntary sector--all are equal members. The team believes it is important to actively involve clients and their carers in the development and direction of research because they can provide a unique perspective ensuring that the research addresses issues of importance to them as service users. We examine and discuss the importance of preparation, support, and training to meaningfully engage in the virtual steering group and the direction of this research. The paper concludes by making recommendations about this model of involving service users in research.
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