8.5.2 Support needs of parents who have lost a child to cancer (307)

Sally Roberts, Research Student, Salford Centre for Nursing, Midwifery and Collaborative Research, University of Salford, Salford, United Kingdom Co author: Tony Long t.long@salford.ac.uk

Abstract:

The presentation focuses on the data sources and findings from a study investigating support for bereaved parents whose child died from cancer.

Background:

About 1/600 children develops cancer before age 15 , and approximately 30% of children with cancer die. Research on medical treatment and the needs of children with cancer are extensively reported in the literature. However, there is little knowledge to guide professionals about how best to support bereaved parents.

Aim:

To establish what support was available to parents and what was needed following the death of a child from cancer; and to identify which elements of available support were helpful or less effective.

Method:

A purposeful sample of parents who had lost a child aged 16 or less to cancer in the past 5 years was recruited through a national support network: The Compassionate Friends (TCF). Data was collected in 2005-2006 through parents’ written narratives, passive analysis of TCF website, and observation and interviews with bereaved parents attending conferences and support groups. An adaptation of Roper and Sharpria’s strategy for ethnographic data analysis was employed, aided by use of NVivo.

Results:

Parents needed:

Continued contact with professionals (perceived to end abruptly on the death).
Professionals who attended the funeral and sent cards on the anniversary were valued sources of support.
Professionals to recognise their child by name and to maintain this identity. • information from professionals about groups like TCF
Truthful information about treatment choices to avoid false hope
Messages for practice Implement a 24 hour service (through a link nurse) during the first days following the death. Improve information about support networks
Establish a bereaved parents database for mutual support links. Prepare professionals to “get the support right first time” before, around and after the death.
More support for bereaved siblings

Biography:

Sally Roberts is a PhD student in the University of Salford Centre for Nursing, Midwifery and Collaborative Research. At the time of preparing this abstract she was in the process of submitting the thesis. She gained a BN from Cardiff University in 1989 and a MN in 1999. Her clinical experience included caring for children with cancer. Following completion of the doctoral study she plans to continue her research into the support needs of other family members, including siblings and grandparents.