developed with the help of parent representatives, might help to drive this learning process faster. At this stage of paradigm shift, the majority of parents involved in research still need the strong leadership by the consortium leader/principal investigator who should foster their inclusion in the project and guide parent representatives on how to give input. european foundation for the care of newborn infants Powered by 12 Train parents to better understand the aspects of research: study design, data collection, statistics, publications, meta-analyses, … Parent representatives in research projects do not need to be research experts, but they need to know the basics of academic language and how research works, the potentials or limitations, etc. Professionals have to learn how to communicate with parents and to see, acknowledge and respect the value in their contributions. Including parent representatives in research projects requires a more sensitive way of communication. 2.5. Longitudinal involvement and collaboration vs. consultation Collaboration A fair partnership also includes a longitudinal role of parent representatives during the research process. Collaboration should not be restricted to reviewing study documents or being involved in advisory committees (which would be better described by the term consultation). Meaningful collaboration in its core sense should be fostered in every step of the research lifecycle. Collaboration involves an on-going partnership between the research team and parent representatives, in which decisions about the research are shared. A longitudinal involvement will furthermore facilitate the collaboration for new research projects. Consultation Of course there might also be tasks which can be adequately managed by consultation (e.g. votes among the final informed consent documents initially worked out in collaboration). The consultation process can also be defined as follows: researchers ask a pool of parents for their views and researchers in turn use these views to inform their decision making. It is recommended that parents are given enough time to respond. They should be provided with feedback on the actions taken as a result of the consultation, otherwise parents might be left frustrated and unwilling to participate next time. But even this kind of consultation should ideally be coordinated and led by a parent organisation, which has a good understanding of parents’ feelings and their way of thinking, and thus can help translate research tasks and give advice on user-friendliness and clarity. A structured approach of coordination of consultations and feedback through parent organisations can help to avoid the so-called danger of “consultation fatigue”. european foundthe care of newPowered by 13 Involve parent representatives in the different steps of research: from identifying research topics, setting and prioritising research agendas in general to involvement in the thinking process for a project, submitting applications to the later project implementation. When developing the practical implementation, parent representatives can help to decide when to give which information and to whom. They can help to make informed consents, information brochures, and other material understandable and parent friendly. They can represent the reality of parents to predict the impact of the research on the families. Parent representatives can mentor researchers on how to best communicate with parents, how to understand the parents’ needs. Parent organisations can help promote the research project among their networks and motivate families to participate by spreading information, by explaining the importance of research to the parental community, etc. What was the way of agreeing your organisation's participation in the research project/study? (multiple answers possible) Number of answers 0 5 Other Letter of agreement Oral agreement Contract 10 15 20 2.6. Communication and dialogue When the professional and parental worlds meet in a project, they will have to find a way to communicate with each other: Whereas parent representatives have to learn the technical, academic jargon, professionals have to adapt their language and behaviour to meet parents at equal footing. The communication flow is important to help parent representatives contribute to the project. It should be clearly defined at the beginning of a project how (e.g. through regular written or oral updates, newsletters or e-mails) european foundation for the care of newborn infants Powered by 14 and who (e.g. coordinator, secretariat, project partner, …) should keep the parent representatives informed on all project developments. Acknowledgement and recognition of the parents’ impact is equally important: Information about changes brought about by the parents should be fed back to them. Their work should be recognised through e.g. news or articles on their achievements published on the project website or be acknowledged in the publication. I don´t know Yes Yes No No Did your feedback influence the research project/study? 1 12 9 17 21 Were you regularly informed about the progress of the study (e.g. by newsletters, phone calls)? european foundthe care of newPowered by 15 2.7. Compensation and payment Parent organisations are the ideal bodies to nominate and coordinate parent representatives for research projects. However, they, as well as the later parent representatives in the projects, have only limited resources and time. They cannot cover research participation with their normal fundraising or through donations but have to receive compensation in order to be able to participate in research. It is important that parent representatives are financially supported to cover travel costs and to compensate for the time they invest in the preparation, attending and debriefing of meetings, their contributions as well as for any other expenses or administrative costs associated with the project. Researchers need to be realistic about the resources required for patient involvement throughout their project: Compensation offered in addition to the administrative costs should be