Guidelines as governance: Critical reflections from a documentary analysis of guidelines to support user involvement in research.

Although guidelines to regulate user involvement in research have been advocated and implemented for several years, literature still describes the process as challenging. In this qualitative study, we take a critical view on guidelines that are developed to regulate and govern the collaboration process of user involvement in research. We adapt a social constructivist view of guidelines and our aim is to explore how guidelines construct the perception of users and researchers and thus the process of involvement. Twenty-two guidelines published between 2006 and 2019 were analyzed iteratively. The analysis focuses on values which are emphasized in the guidelines on the distribution of entities, knowledge, and tasks between users and researchers. The analysis indicates that users and researchers are constructed differently; researchers are mainly constructed as responsible initiators and caretakers, while users are constructed as powerless and vulnerable. The guidelines portray the collaboration process as harmonious and assume a normative perspective. In doing so, challenges described in the literature related to power imbalances are not addressed. Based on these findings, we ask if these guidelines might function to maintain existing power imbalances between users and researchers.

Users' and researchers' construction of equity in research collaboration.

BACKGROUND: Equity 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. OBJECTIVE: This study explored users' and researchers' constructions of equity in research processes. DESIGN AND METHOD: The 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. FINDINGS: The 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 CONCLUSION: Users 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.

Coming from two different worlds-A qualitative, exploratory study of the collaboration between patient representatives and researchers.

BACKGROUND: Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers' and users' perspective. OBJECTIVE: By bringing together researchers and patient representatives, this study explores and describes both parties' experiences with user involvement in research as they appear through interactions in a focus group. DESIGN: We apply a qualitative design using positioning theory as a theoretical framework. SETTING AND PARTICIPANTS: Researchers and patient representatives were mixed within 2 focus groups. Positioning theory was used to guide the analysis. FINDINGS: The discussion evolved around knowledge, equity and partnership, all related to power through constant negotiations of positions. Researchers and users ascribed various positions while discussing these topics. Various positions are seen as the result of different rights and duties in the research process. Power differences in the form of different rights and duties stand out as barriers. Being positioned as a partner was an important aspect for users in our study. Researchers assumed passive positions within the focus group, whereas users assumed active positions by expressing their wishes and needs. DISCUSSION AND CONCLUSION: Our study indicates that positions relating to status and knowledge in the involvement process are important. The findings suggest that the positions that users and researchers assume and ascribe throughout the process are constantly changing; however, the researchers tend to have more power. More studies are needed to understand how equity is perceived in user involvement in health research.

Everyday Life After Colon Cancer: The Visible and Invisible Challenges.

BACKGROUND: There is little research regarding how everyday life is affected by colon cancer treatment. Few studies exist that exclusively examine patients with Dukes C colon cancer. Most studies include other types of bowel cancer and different stages. OBJECTIVES: The aims of this study were to explore and describe how colon cancer survivors experience everyday life in general and sexuality in particular after treatment of Dukes C colon cancer. METHODS: The study is exploratory and descriptive and uses semistructured interviews to collect data. Nine participants were interviewed regarding their everyday lives up until 2 years after concluded treatment. The analysis was done using Graneheim and Lundman's method of content-analysis. RESULTS: Bodily changes are a consequence of colon cancer. Exhaustion, colon problems, and visible bodily changes are some of the challenges that survivors are faced with. Socializing with friends was different, and work had to be facilitated. Social networks proved to be a good support, and spouses were considered to be the most important source of social support. Sexual challenges were experienced by men and women alike. CONCLUSION: Participants experience changes in day-to-day life after cancer treatment. Social networks and the participants' own coping strategies are key to shaping everyday life after treatment. IMPLICATION FOR PRACTICE: It is crucial that healthcare professionals have a holistic view of patients. Both partners and physical activity were identified as an integral part of coping. Seniors are often less active, and some have lost their spouses, it is therefore especially important to examine this demographic. A survey before and after treatment can help optimize rehabilitation.