Providing Palliative Care for the Child with Cancer: The Experience of GPs

Neilson, Susan, Greenfield, S., Kai, J. and MacArthur, C. (2009) Providing Palliative Care for the Child with Cancer: The Experience of GPs. In: PONF Biennial Joint Cancer Conference and Exhibition - Paediatric Oncology Nurses’ Forum : ‘Back to the future: 25 years of PONF’, 20th - 21st July 2009, University of York. (Unpublished)

Abstract

Background
Childhood cancers are rare and general practitioners (GPs) have limited experience in caring for these children and even less in providing their palliative care. Most families prefer that their child is cared for at home in the palliative phase of their illness, with professional support from those known to them (Chambers and Oakhill 1995, Vickers and Carlisle 2000, Craft and Killen 2007).
A community based qualitative study examined the experiences of ten GPs following their involvement in the care of a child with cancer receiving palliative care within the family home.
Methods
Data collection was through 1:1 in-depth interviews and facilitated case discussion supported by field notes and grounded theory analysis (chronological comparative data analysis identifying generated themes). Social worlds theory was used as a framework to aid examination, and facilitate critical understanding, of the experiences of the GPs.
Findings
This presentation focuses on five of the findings relating to the experiences of the GP; the impact of minimal contact; lack of knowledge and experience, uncertain role, out of hours service provision and the emotional toll.
Findings highlighted that GPs often have to re-establish their role at the child’s transition to palliative care. Factors hindering the GP in this process include a deficit of specialist knowledge and experience of paediatric palliative care and lack of role clarity.
Conclusions/points of interest
Strategies for enhancing the role of the Macmillan team in supporting GPs have been identified by this study, such as enhanced collaborative working. Findings have also provided further confirmation of the substantial variation in out of hours medical palliative care provision; with evidence that some GPs work beyond their remit in providing informal out of hours care.
This presentation details the findings of one aspect (the experiences of GPs) of a wider study that explored the experiences of 54 community based health professionals (GPs, community nurses and allied health professionals) who had been involved in caring for a dying with cancer receiving palliative care at home (Neilson 2009).

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