Completed Research Project

Bereavement support of parents whose child has died from cancer

Investigators: Monterosso, L., deCinque, N., Dadd, G., Sidhu, R., & Lucas, R.

Funding: The Malcolm Sargent Cancer Fund and ECU ($7000).

Abstract: The impact of childhood cancer on the patient and family is devastating and results in significant emotional and physical effects on the child and family. An increasing awareness of the role of health care professionals at this time has led to the development of hospital-based bereavement support services. However, many services are not evidence based, and family support varies between institutions. Phase One of this study determined current practice relating to hospital-based bereavement support programs, and Phase Two explored the experiences and needs of parents who had received hospital-based bereavement support following the death of their child from cancer, in Western Australia. In Phase One, a survey of all major tertiary paediatric oncology units in Australia and New Zealand was undertaken. Findings showed the majority of paediatric oncology units in both Australia and New Zealand provide dedicated multidisciplinary bereavement support services; however, there is variation in services provided, often due to a lack of resources and staffing. Findings indicated a need to further develop bereavement programmes, improve staff education and support, and increase the availability of resources in this area. In Phase Two, qualitative interviews were undertaken with parents. Six prominent themes emerged from thematic data analysis: personal grief, personal coping, concern for siblings of the deceased child, hospital bereavement support, community supports and unmet needs. Parents identified the need for more supportive contact from hospital staff during the palliative phase and following the child’s death, early provision of information on how to practically and emotionally prepare for the death of their child, contact with other bereaved parents, and formal grief support for siblings. Areas for future research include exploration of parents’ wish to become involved in activities to help others, bereavement support for siblings, the level of contact with the hospital unit that may be therapeutically beneficial, and parental behaviours associated with accessing both hospital and community based bereavement supports.