Background Service user involvement is embedded in the United KingdomÕs National Health Service, but knowledge about the impact of involvement on service users, such as the benefits and challenges of involvement, is scant. Our research addresses this gap.

PurposeCancer survivors are increasingly expected to manage the consequences of cancer and its treatment for themselves. There is evidence that self-efficacy is important for successful self-management and that this can be enhanced with support. The purpose of this study was to assess self-efficacy to manage problems in the year following primary treatment.MethodsThis cross-sectional online survey included cancer survivors who had completed their treatment within the past 12 months. Self-efficacy was assessed and variables expected to be associated with self-efficacy were measured using validated scales including quality of life, well-being, illness perceptions, depression and social support.ResultsOne hundred eighty-two respondents (mean age 50; 81 % female) completed the survey. They had been treated for a range of cancers; most commonly breast (45 %). Self-efficacy scores varied between individuals and according to the illness-related task to be managed. Respondents were least confident in managing fatigue and most confident in accessing information about their cancer. Individuals most likely to report low self-efficacy were women, those experiencing higher levels of pain and/or depression, lower well-being scores, lower socio-economic status, low levels of social support, or a more negative perception of cancer.ConclusionsSelf-efficacy to self-manage problems faced as a consequence of cancer and its treatment can vary widely in the year following treatment. Fatigue may be particularly difficult to manage.Implications for Cancer SurvivorsVariations in self-efficacy highlight the importance of assessing specific problems faced and people’s confidence to manage them in order to tailor appropriate self-management support.

In this article the process and outcomes of service user involvement in the analysis of data are discussed. The analysis formed part of a doctoral participatory research project, which involved researcher and service users working together. The focus of the research was on the experience and needs of service users with life limiting conditions including any influence on the experience produced by social factors. Service users with a range of life limiting conditions took part in the research. A separate group of service users affected by life limiting conditions formed the Service User Research Advisory Group (SURAG) that met 32 times over three years and was an integral part of the research. A novel and workable collaborative analysis approach is described along with the identification of similarities and differences between researcher and service user interpretations of data.

Patient and Public Involvement (PPI) is a cornerstone of UK National Health Service (NHS) policy. The Cancer Partnership Project (CPP) is the leading national PPI initiative in cancer care. The CPP espouses a "partnership" model, with a "Partnership Group" - collaborative service improvement groups formed of NHS staff and service users - in each of 34 cancer networks in England. These groups aim to enable service users to influence local cancer service development and thereby improve the effectiveness of services. We interviewed 59 cancer service users and NHS staff in a reflective evaluation of CPP. Groups were active and visible in 30 networks, their main activities being: providing an accessible source of consumer opinion; prolific networking and representation; patient information and communication projects; and lobbying for service improvements. The groups exhibited some significant tensions. The motivations of professional staff varied markedly, and "obligatory" involvement as part of a person's job was counter-productive when not coupled with a "personal" belief in the value of PPI. Other controversial areas were the disclosure by patients' of personal health and treatment experiences, and emotional attachment to the group. It was concluded that partnership groups represent a useful PPI model, but more attention generally should be paid to the complexities of PPI and timescales required for meaningful cultural change.

Objective: The aim of this study is to co-create an evidence-based and theoretically informed web-based intervention (RESTORE) designed to enhance self-efficacy to live with cancer-related fatigue (CRF) following primary cancer treatment.Methods: A nine-step process informed the development of the intervention: (1) review of empirical literature; (2) review of existing patient resources; (3) establish theoretical framework; (4) establish design team with expertise in web-based interventions, CRF and people affected by cancer; (5) develop prototype intervention; (6) user testing phase 1; (7) refinement of prototype; (8) user testing phase 2; and (9) develop final intervention.Results: Key stakeholders made a critical contribution at every step of intervention development, and user testing, which involved an iterative process and resulted in the final intervention. The RESTORE intervention has five sessions; sessions 1 and 2 include an introduction to CRF and goal setting. Sessions 3-5 can be tailored to user preference and are designed to cover areas of life where CRF may have an impact: home and work life, personal relationships and emotional adjustment.Conclusions: It is feasible to systematically 'co-create' an evidence-based and theory-driven web-based self-management intervention to support cancer survivors living with the consequences of cancer and its treatment. This is the first account of the development of a web-based intervention to support self-efficacy to manage CRF. An exploratory trial to test the feasibility and acceptability of RESTORE is now warranted.