The supportive and palliative care needs of Australian families of children who die from cancer

Abstract

Objective To identify the perceptions of parents of children who died from cancer regarding the palliative and supportive care they received in hospital and in community settings. Method Face-to-face or telephone questionnaires. Setting Tertiary paediatric oncology centres in Western Australia, New South Wales, Queensland and Victoria. Participants 69 parents. Results Parents indicated the need for clear and honest information about their child’s condition and prognosis throughout the trajectory of illness. Parents also required access to, and advice from, multidisciplinary health professionals when caring for their child at home. Parents preferred to care for their child at home wherever possible throughout the palliative care trajectory of their child’s cancer and were well supported by immediate and extended family and friends. However, many families were affected emotionally and financially by the burden of caring for their child with incurable cancer. Families required financial and practical assistance with providing care from their child. Parents wanted and needed more practical resources and information to assist with the management of their child’s nutrition and pain, as well as for the support of their other children. Conclusion Care for children and their families should be coordinated by a multidisciplinary team in consultation with children and their families, and should be linked and integrated with the treating hospital in collaboration with community services.