Exploring participation of parents of children with complex care needs in higher education

Background: Although collaboration between care professionals and parents of children with complex care needs is becoming increasingly important, little is known about how students can be prepared for collaboration with these parents within the academic curriculum. The current study examined participation of parents of children with complex care needs in the curriculum and focused on three questions: 1) How can these parents be involved? 2) What (could) students learn from it? and 3) What important conditions are needed for sustainable participation? Method: An explorative mixed-methods study based on the principles of participatory action research was performed in the Bachelor Pedagogical Sciences. In total, 64 participants (parents, students, academic staff, pedagogues, and persons with a disability) were involved in a case study or interview study. Questionnaire and interview data were coded using the Towle taxonomy for patient involvement and the CanMEDS competency framework. Results: All stakeholders agreed that parents should and could be more involved in the curriculum. 1) Parents could have the role of educator at different levels. 2) By listening to parents’ authentic stories, students can develop greater motivation and competencies in the roles of professional, communicator, and clinical expert. 3) In addition to time and (financial) compensation, relevant conditions were flexibility, collaboration, and training for parents. Conclusions: Parents of children with complex care needs are willing to participate in higher education and to share their experiences with students. Their role as educational partners can support the development of relevant competences. For long-term success of parent participation, conditions at both the organizational and practical level should be supported.