In recent years there has been a distinguishable trend towards user involvement in ageing research. Researchers and policy makers both are increasingly convinced that user involvement is necessary to adapt research questions and methods to meet the needs of older people. Little is known, however, about the quality of collaborations between older people and researchers. This study systematically evaluates a collaboration undertaken between two academic researchers and three older people acting as co-researchers in an effort to identify the conditions required for equal collaboration. To evaluate the collaboration the co-researchers and academic researchers took part in individual in-depth interviews (after six months) and two reflection meetings (after six and 12 months). Throughout the collaboration, field notes were taken by both academic researchers and co-researchers. A detailed description of the collaboration is provided here, using the metaphor of a journey to illustrate the dynamics and the learning process of the participants. Interim reflection meetings – at which mutual expectations were expressed along with a frank discussion of prejudices, tasks and role divisions, and the sharing of personal and project-related needs and information – were found to be fruitful in achieving a positive working relationship and fostering an effective collaboration. We conclude that a learning perspective on participation can be a resource for learning and adaptive change.

BackgroundMental illnesses affect many people around the world, either directly or indirectly. Families of persons suffering from mental illness or addiction suffer too, especially their children. In the Netherlands, 864,000 parents meet the diagnostic criteria for a mental illness or addiction. Evidence shows that offspring of mentally ill or addicted parents are at risk for developing mental disorders or illnesses themselves. The Kopstoring course is an online 8-week group course with supervision by 2 trained psychologists or social workers, aimed to prevent behavioral and psychological problems for children (aged 16 to 25 years) of parents with mental health problems or addictions. The course addresses themes such as roles in the family and mastery skills. An online randomized controlled trial (RCT) was conducted to assess the effectiveness of the Kopstoring course.ObjectiveThe aim was to gain knowledge about expectations, experiences, and perspectives of participants and providers of the online Kopstoring course.MethodsA process evaluation was performed to evaluate the online delivery of Kopstoring and the experiences and perspectives of participants and providers of Kopstoring. Interviews were performed with members from both groups. Participants were drawn from a sample from the Kopstoring RCT.ResultsThirteen participants and 4 providers were interviewed. Five main themes emerged from these interviews: background, the requirements for the intervention, experience with the intervention, technical aspects, and research aspects. Overall, participants and providers found the intervention to be valuable because it was online; therefore, protecting their anonymity was considered a key component. Most barriers existed in the technical sphere. Additional barriers existed with conducting the RCT, namely gathering informed consent and gathering parental consent in the case of minors.ConclusionsThis study provides valuable insight into participants’ and providers’ experiences and expectations with the online preventive intervention Kopstoring. It also sheds light on the process of the online provision of Kopstoring and the accompanying RCT. The findings of this study may partly explain dropout rates when delivering online interventions. The change in the (financial) structure of the youth mental health care system in the Netherlands has financial implications for the delivery of prevention programs for youth. Lastly, there are few RCTs that assess the effectiveness and cost-effectiveness of online prevention programs in the field of (youth) mental health care and not many process evaluations of these programs exist. This hampers a good comparison between online interventions and the expectations and experiences of the participants and providers.Trial RegistrationNederlands Trial Register: NTR1982; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=1982 (Archived by WebCite® at http://www.webcitation.org/6d8xYDQbB)

A trusting relationship should be given high priority in the care for community-dwelling frail older people. To improve the care programmes, screening and selection procedures need adjustments. Practice nurses should receive more support in dealing with older people with psychosocial problems.

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BackgroundValue of information (VOI) is a tool that can be used to inform decisions concerning additional research in healthcare. VOI estimates the value of obtaining additional information and indicates the optimal design for additional research. Although it is recognized as good practice in handling uncertainty, it is still hardly used in decision making in the Netherlands.ObjectiveThis paper aims to examine the potential value of VOI, barriers and facilitators and the way forward with the use of VOI in the decision-making process for reimbursement of pharmaceuticals in the Netherlands.MethodsThree focus group interviews were conducted with researchers, policy makers, and representatives of pharmaceutical companies.ResultsThe results revealed that although all stakeholders recognize the relevance of VOI, it is hardly used and many barriers to the performance and use of VOI were identified. One of these barriers is that not all uncertainties are easily incorporated in VOI, and the results may be biased if structural uncertainties are ignored. Furthermore, not all research designs indicated by VOI may be feasible in practice.ConclusionsTo fully embed VOI into current decision-making processes, a threshold incremental cost-effectiveness ratio and guidelines that clarify when and how VOI should be performed are needed. In addition, it should be clear to all stakeholders how the results of VOI are used in decision making.