BackgroundThis paper reports on the process of involving former and current cancer patients and carers as co-researchers in a Danish mixed methods research project on patient empowerment of cancer patients in follow up (The Empowerment study 2015–2019). User-Involvement in health care research is a relatively new practice in Denmark and the Empowerment project was one of the first to systematically involve patients and carers in its research design, conduct and reporting. The paper has two aims: first, it provides a detailed account of the process of involving co-researchers in the Empowerment project and second, it presents findings from a workshop held with academic researchers and co-researchers on the project to discuss their experiences and recommendations for user-involvement in the Danish context.MethodsThe Empowerment project adopted a consultative and collaborative approach to user involvement and co-researchers were involved from the early stages and all through the project. Users gave feedback on the proposal, helped develop project documents and research tools, acted as peer interviewers in qualitative interviews, participated in data analysis and development of questionnaires, and co-authored journal articles. The workshop held with the academic researchers and co-researchers consisted of two parallel focus groups and a joint group discussion, following an interactive and informal format to facilitate discussion and exchange of ideas.FindingsThe focus group resulted in eleven recommendations for the further development of user-involvement in Denmark. Key issues encountered were the general lack of guidelines on user-involvement in the Danish context and the need for more organisational support. Particular issues, such as payment, recruitment and training, need to be carefully considered within individual projects and within the national context in which projects are carried out.ConclusionThe paper adds to the current very limited knowledge base on user-involvement in the Danish context and provides a set of early recommendations for the further development of the practice in Danish Health Research. User-involvement needs to be developed with consideration to the local context, but common challenges also emphasise the usefulness of cross-country comparisons and knowledge exchange.Electronic supplementary materialThe online version of this article (10.1186/s40900-018-0105-3) contains supplementary material, which is available to authorized users.

Our study provides an overview of the available questionnaires, which can be used by researchers and practitioners who wish to measure the concept of empowerment among cancer patients. Very few questionnaires were explicitly developed to explore empowerment, and the review brings to light a significant lack of questionnaires that measure patient empowerment comprehensively.

BackgroundA range of benefits have been reported from engaging peer interviewers in qualitative interviews, but little systematic evaluation exists to assess their impact on both process and outcomes of qualitative interviews in health research.ObjectiveTo investigate the impact of involving patient representatives as peer interviewers in a research project on patient empowerment.Design18 interviews were carried out as part of the wider study, seven by the academic researcher alone and eleven jointly with a peer interviewer. The interviews were analysed quantitatively and qualitatively to explore potential differences between interviews conducted by the researcher alone and interviews conducted jointly by the researcher and the peer interviewers. A phone evaluation of the peer interviews was carried out with the research participants, and notes were thematically analysed to understand their experiences.ResultsDifferences were identified between the academic researcher and the peer interviewers in the types of questions they asked and the degree to which personal narrative was used in the interview. Peer interviewers varied significantly in their approach. Research participants were positive about the experience of being interviewed by a peer interviewer. No firm conclusions could be made about impact on outcomes.Discussion and conclusionsThe uniqueness and complexity of qualitative interviews made it difficult to provide any firm conclusions about the impact of having peer interviewers on the research outcomes, and the benefits identified from the analysis mostly related to the process of the interviews. Benefits from using peer interviewers need to be considered alongside relevant ethical considerations, and available resources for training and support.

We conceptualized PE based on Zimmerman's theory and empirical data to contextualize the concept in cancer follow-up. When developing a patient reported outcome measure measuring PE for this group of patients, one needs to be attentive to differences in wishes regarding mastery.

Background Posttraumatic stress disorder (PTSD) symptoms are common in chronic Whiplash associated disorders (WAD) and have been found to be associated with higher levels of pain and disability. Theoretical frameworks have suggested that PTSD and pain not only coexist, but also mutually maintain one another. Although the comorbidity has been subject to increasing quantitative research, patients’ experiences of the comorbidity and symptom interaction remain largely uninvestigated using qualitative methods. Objective The present study set out to explore the potential relationship of PTSD and pain in people with WAD and properly assessed PTSD after motor vehicle accidents. Methods A qualitative explorative study of eight individual face-to-face semistructured interviews were conducted. Interviews were recorded and transcribed verbatim and analyzed using framework analysis. Results Through the analysis, we developed three overarching themes. The first theme illustrated the complex and burdensome comorbidity with overlapping and transdiagnostic symptoms, whereas the second theme highlighted how several circumstances, some related to the health care system, could extend and amplify the traumatic response. The final theme illustrated symptom associations and interactions, particularly between pain and PTSD, both supporting and rejecting parts of the mutual maintenance framework. Conclusions These findings underlined the great complexity and variability of the comorbidity and the traumatic event, but also emphasized how experiences of psyche and soma seem closely connected in these patients. The results provide support for the importance of thorough assessment by multidisciplinary teams, minimizing distress post-injury, and a critical approach to the idea of mutual maintenance between pain and PTSD.