Research: A vehicle for listening and promoting meaningful consultation with people with an intellectual disability

Abstract

There is a drive to ensure inclusivity within the research process by involving marginalised groups throughout the whole continuum of research activities. This paper introduces a collaborative research study which aims to establish what adults with intellectual disabilities understand about loss, dying and death. However, this paper is not about the findings of the research, but focuses upon the importance of the process of the research: namely the organising and conducting of a series of progressive focus groups around loss, dying and death. The paper initially contextualises the work by introducing the research study, aims and objectives; it defines key terms; and provides a rationale for exploring user and carer involvement in research. Practical issues around planning and organising the focus groups are then considered and effective communication strategies to maximise the potential for active engagement are presented. The paper concludes by recognising that research can be a vehicle for listening and promoting meaningful consultation with people with an intellectual disability, and the authors suggest a number of recommendations to promote this activity. Active user involvement and consultation can be developed into participation, by actively and constructively forming long-term partnerships and talking with patients, stakeholders, educators, clinicians, nurses and others. Research can form part of this process, and is seen as being part of the broad spectrum of consulting opportunities, as this paper illustrates.