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.

Empowerment is a concept of growing importance in cancer care, but little is known about cancer patients' experiences of empowerment during follow-up. To explore this area, a qualitative systematic literature review was conducted in PubMed, CINAHL, and PsycINFO. A total of 2,292 papers were identified and 38 articles selected and included in the review. The thematic synthesis of the papers resulted in seven analytical themes being identified: empowerment as an ongoing process, knowledge is power, having an active role, communication and interaction between patients and health care professionals, support from being in a group, religion and spirituality, and gender. Very few articles explicitly explored the empowerment of cancer patients during follow-up, and the review identified a lack of attention to patients' own understandings of empowerment, a lack of specific focus on empowerment during follow-up, and insufficient attention to collective empowerment, as well as ethnic, social, and gender differences.

Young people's sexting is an area of increasing concern amongst parents, educationalists and policy makers, yet little research has been conducted with young people themselves to explore their perspectives on the support they need to navigate relationships in the new digital media landscape. To address this absence, an inter-disciplinary team of researchers undertook a participatory study with students, aged 13 to 15, in a UK secondary school. This paper outlines key study findings, including young people's views on sexting, their recommendations for improved education around sexting in schools, their preferred sources of support, and their perspectives on the way adults should respond to young people's sexting. Findings indicate that sexting education needs to be developed within the context of wider relationship issues, such as gender, power dynamics and trust between peers, and improved communication between students and teachers or other responsible adults. Findings may be used to consider ways of designing and communicating messages around sexting to young people within and beyond educational settings.

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.

Changing conceptions of children and childhood have in the last three decades led to the increasing participation of children in social research and their involvement in active research roles. However, the benefits and challenges of this process are rarely discussed in relation to the wider literature on adult involvement, thus missing an opportunity to learn from potential commonalities or differences. In this paper, I argue for an explicit comparison between children’s involvement in research and (adult) service user involvement in health and social care research. The paper presents findings from a review of children’s involvement in research, first separately, and second, in comparison with themes from the literature on service user involvement. As the paper will illustrate, many of the themes manifest themselves in similar ways in the two areas of practice, leaving scope for the development of cross-disciplinary practice, reflection and conceptual development. Particular suggestions deriving from the paper are (a) a strengthening of organisational frameworks within Higher Education institutions to facilitate the involvement of diverse groups of children in research, (b) the development of a more systematic mechanism for reporting the involvement of children and young people in research and (c) cross-disciplinary and theoretical exploration of key concepts such as power and empowerment within the involvement context.

This article discusses the life projects of migrant children and young people in England and Spain and illustrates the importance of exploring family dynamics, contextual legal constraints, and 'transnational uncertainties' as part of young migrants' ideas about the future. It reflects on the dilemma posed by acknowledging the agency of migrant children in relation to their future while at the same time considering the constraints they meet as minors and migrants within a broader family and societal context.

A scoping review of studies carried out in the UK and the USA was conducted to explore the perceptions, experiences, and needs of culturally and linguistically diverse families of children with autism. Overall, 32 articles met the inclusion criteria, 25 studies were conducted in the USA and 7 studies in the UK. Four themes emerged including (a) knowledge and beliefs about autism and their impact on the family; (b) autism and family life; (c) family experiences of accessing services and support, and parents' needs; and (d) multilanguage. Findings highlighted that family perceptions of autism are influenced by an often-reported lack of knowledge; experiences include social stigma as well as difficulties in having access to services. Needs indicate the development of culturally sensitive interventions, information in multiple languages, and parent-professional collaboration. Implications for research, policy, and practice are included.