Abstract
BackgroundEquity is described as an ideal in user involvement in research and is mentioned in the health service literature and in several guidelines. However, equity is described as being difficult to obtain and the concept is rarely clarified or concretized. Equity can be socially constructed.ObjectiveThis study explored users' and researchers' constructions of equity in research processes.Design and MethodThe study had a qualitative research design. Constructions of equity were analysed through the lens of positioning theory. Two focus group interviews consisting of both users and researchers were conducted.FindingsThe thirteen users and four researchers considered ‘equity’ as an important part of user involvement in research. Storylines about norms, responsibility, language, knowledge and usefulness evolved in the discussions. These storylines elucidated unequal access to rights and duties.Discussion and conclusionUsers and researchers constructed equity in user involvement differently, but the difference was masked by an apparent agreement. Users and researchers drew on different storylines. The researchers emphasized the scientific discourse and although users acknowledged this discourse, they attempted to oppose this dominant discourse by drawing on a lay discourse. The identified constructions and negotiations of equity may contribute in new understandings of an equal collaboration in user involvement in research.
Highlights
|2 values are described as important for user involvement in research, and values related to respect, partnership and equity are often raised in the literature.[11]
Health service literature indicates that users and researchers both describe equity as vital without elaborating on what it means to be equal partners in the context of user involvement in research.[11]
Positioning theory focuses on interaction;[38] we considered focus group discussions to be an appropriate method for data collection
Summary
User involvement is progressively becoming a routine element of health service research and is increasingly a common requirement for research funders.[1,2,3] the importance of involving patients and the public in health-care research is recognized, reviews of the literature find that users' roles are more often consultative than collaborative.[4,5,6] Moral,[7] political,[8] ethical[9] and democratic[10]Health Expectations. 2020;00:1–10. | wileyonlinelibrary.com/journal/hex 1|2 values are described as important for user involvement in research, and values related to respect, partnership and equity are often raised in the literature.[11]. Equity is described as an ideal in user involvement in research and is mentioned in the health service literature and in several guidelines. Storylines about norms, responsibility, language, knowledge and usefulness evolved in the discussions. These storylines elucidated unequal access to rights and duties. Discussion and conclusion: Users and researchers constructed equity in user involvement differently, but the difference was masked by an apparent agreement. The identified constructions and negotiations of equity may contribute in new understandings of an equal collaboration in user involvement in research
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