Family participation in childhood cancer care

Abstract

This is the published version of a paper published in Journal of Nursing Education and Practice. Citation for the original published paper (version of record): Kästel, A., Enskär, K. (2013) Family participation in childhood cancer care. Abstract Background: Child cancer care is becoming increasingly successful, the treatment brought more success through intensified therapy, but this development has not been easy to achieve due to the pain and anxiety that the treatment often causes. It is not possible to eliminate the chaos the family experiences, but it can be reduced through a deepened understanding of the situation. Purpose: The aim of the study is to highlight families views on participation in childhood cancer care. Method: A qualitative design, appropriate to gain a holistic view, has been chosen. Eight families with children diagnosed with cancer, of various ages and gender and from various backgrounds, participated in five interviews each during the first year of the child´s illness. Findings: The families constitute a cornerstone in paediatric oncology care today, but the results indicate that all the various tasks and commitments for the families, sometimes entail too heavy a burden. They are in need of better support and clearer instructions to be able to cope with the situation including rules and measures concerning the child. Therefore, it is urgent to clarify who has the formal responsibility for medical consequences that might occur in connection with delegated responsibility. The study shows that there is a lack of pedagogical thought and a need to create a pedagogical model. Conclusion: There is a need for guiding principles and education for the parents, which would contribute to their increased confidence.