Family experiences and viewpoints of palliative and supportive care for children with cancer: Can we do better?

Family experiences and viewpoints of palliative and supportive care for children with cancer: Can we do better?

Du Plessis J; Stones D; Meiring M

Pediatric Blood and Cancer

2018

oncology; South Africa; grounded theory; basic needs; sibling; conference abstract; financial management; psychosocial care; human; child; female; male; interview; clinical article; awareness; palliative therapy; qualitative research; staff; exploratory research; error

Background/Objectives: Palliative and supportive care needs of children with cancer and their families are unique and require special attention. Development of appropriate services sensitive to the needs of families and based on observed evidence has become more and more recognized. As an introduction to develop and improve supportive and palliative care services for children with cancer, families were questioned regarding their experiences and suggestions for improvements. Design/Methods: In this exploratory, qualitative study using a grounded theory approach, sixteen family members of children with cancer and treated at Universitas Academic Hospital, Bloemfontein, South Africa were interviewed regarding their children's standard oncology and supportive/palliative care. Their responses were studied and repeating themes were identified. Results: A number of areas of need were identified: erratic psychosocial support, minimal financial support, poor parental access to basic needs and food provision, preventable errors in procedures and lack of sibling support. Staff were also not always sufficiently equipped to attend to palliative care patients. Conclusions: Supportive and palliative care for children with cancer need to be improved. Family members are a valuable resource and the interviews identified a number of themes, valuable to consider in the expansion of a supportive/palliative service. The intension of the study were to create the awareness that by making small and affordable changes the quality of care the children and families receive can be improved.

Oncology 2018 List