This paper presents a coherent framework for designing and evaluating public involvement in research by drawing on an extensive literature and the authors' experience. The framework consists of three key interrelated dimensions: the drivers for involvement; the processes for involvement and the impact of involvement. The pivotal point in this framework is the opportunity for researchers and others to exchange ideas. This opportunity results from the processes which bring them together and which support their debates and decisions. It is also the point at which research that is in the public interest is open to public influence and the point at which the interaction can also influence anyone directly involved. Judicious choice of methods for bringing people together, and supporting their debate and decisions, depends upon the drivers of those involved; these vary with their characteristics, particularly their degree of enthusiasm and experience, and their motivation.
Objectives The objective of this study was to identify what children and young people in a health district in a large urban area experience as positive -and not so positive -about their local health services, in the light of a growing expectation that users play a more central role in the design and delivery of services.Design A qualitative study incorporating a range of methods, including interviews, play techniques and a website.Setting Schools, nurseries, community groups, in-and outpatient settings in an inner London health authority.Participants Young people aged between 4 and 19 years, from community (n ¼ 92) and clinical (n ¼ 57) settings. This included Ôhard-to-reachÕ children, including those leaving care, those in touch with the criminal justice system, asylum seekers, and those with learning disabilities.Results Alongside planning and environment issues, young people particularly emphasized the impact of communication and relationships with staff on their experience of health services.Discussion and conclusions Using a range of flexible and ageappropriate techniques, young people, even those as young as 4 or 5, are able to comment helpfully on their experiences of service provision. What children had to say is revealing but not astonishing to those working in the National Health Service (NHS). Clinicians and managers, to whom our findings were fed back, made this clear. If we have known for so long that the issues raised here are problems, why are we so poor at acting on this knowledge? The authors suggest four explanations.
Background Patient and public involvement means researchers working with members of the public, patients or carers to jointly plan and carry out research. Aim This article is written by members of three involvement groups, and the university employees that they work with. We wanted to jointly reflect on what enables our collaborative work, and what the challenges are for everyone involved. What we did and how we did it We wanted to establish what the literature defines as 'good' public involvement and compare this with processes and practices in our involvement groups. We therefore carried out a literature review and each group met separately to discuss what characterises good involvement, and what the challenges are. From these discussions we developed a set of descriptions about each group. We compared the literature review findings with what came out of the discussions within the involvement groups. Findings Some of the involvement principles from the literature were similar to the priorities of the involvement groups. In addition, the groups identified characteristics of 'good' involvement practice that were not reported in the literature: passion and enthusiasm, informal and welcoming meeting spaces, and opportunities to share lived experiences. In this article we present examples of how principles for good involvement are practiced in these groups, and difficulties we have experienced.
Researching 'hard to reach' children and teenagers K Curtis et al .
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