How can educational support for parents in the care of children with life-limiting illnesses be successful? An empirically-founded and theory-based concept development / Wie kann edukative Begleitung von Eltern in der Versorgung lebenslimitierend erkrankter Kinder gelingen? Eine empirischfundierte und theoriegeleitete Konzeptentwicklung

Background and objectives Parents of children with life-limiting diseases are central informal care providers. They fill out their role as co-producers of the health care system in different ways, as empirically reconstructed parent type's show. In this article, the heterogeneous social practice of physiotherapeutic care provision is reflected from the perspective of self-regulation theory. The aim is to identify starting points for how parental self-efficacy can be positively influenced by educational support. Method The types of parents reconstructed by means of the Documentary Method according to Ralf Bohnsack serve as a starting point for the theoretical consideration. First, the theory of self-regulation and findings from research on increasing parental self-efficacy are presented. In the following, we will discuss how parents of children with life-limiting illnesses regulate themselves or develop self-efficacy when taking over care. Finally, it is shown which findings result from the theoretical consideration for an educational concept development. Results This theory-guided consideration of empirically generated parent types shows that their self-perception and situation perception, motivation and level of participation, self-regulation processes and trained self-efficacy vary significantly. There is evidence that parent-oriented information, observation of peers in groups and the possibility of positive experiences have a positive influence on self-efficacy. Conclusion These elements should be taken up in the development of educational intervention concepts for this target group and systematically tested for their effects.