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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
The effect of involvement in participatory research on parent researchers in a Sure Start programme
1Institute of General Practice and Primary Care, ScHARR, University of Sheffield, Sheffield, UK. a.m.rowe@sheffield.ac.uk
Abstract:
Involving service users, patients and members of local communities in health and social care research is becoming increasingly common. However, surprisingly little research has been carried out to examine the experiences of such lay researchers. This paper presents the findings of a study to investigate the experiences of a group of parent researchers involved in a community survey within a UK Sure Start programme. The survey was undertaken to provide insight into the early impact of the programme and inform Sure Start programme expansion. Researchers were recruited from the local community and were given an accredited training programme, before working on the development of the research itself. They took a lead role in the development, data collection, analysis and report writing phases of the survey and have been actively involved with the dissemination of findings. In order to gain insight into the experiences of the lay researchers involved in this work, three separate methods were used to collect data: questionnaires before and after the study, a focus group at the end of the data collection phase and by analysis of personal diaries kept by the parent researchers. Findings reported include lay researchers responses to the accredited training programme, the development of new skills and understanding, access and the conduct of interviews and the impact of the work both for Sure Start and the researchers themselves. Some of the strengths and difficulties of participatory research are discussed and comment made on the extent to which lay involvement impacted on the conduct of the survey.
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