This tool has the capacity to enable individuals to capture experiences in a storyboard format; that can be stored; is easily retrievable; can be printed out; and could feasibly be personalised by the insertion of photographs.
Bowel cancer is the fourth most common cancer in England, and with 1:20 people developing bowel cancer, it is the second highest cause of cancer deaths. If diagnosed early treatment can be more effective and screening programmes can reduce these mortality figures, yet there are some people for whom access and uptake of screening programmes is significantly less than the rest of the population -namely people with intellectual disabilities. This articles aims to describe the process of co-production when working with a group of people with intellectual disabilities to explore why they may be reluctant to access bowel cancer screening programmes. Bowel cancer, its incidence and prevalence is introduced; the screening process described; and the population involved defined. The co-production process is catalogued, where clinicians, academics and people with intellectual disabilities worked together to explore the challenges of accessing screening programs. The article concludes with recommendation to inform practice.
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.
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