GPs experience of caring for children with cancer receiving palliative care at home

1. GPs experience of caring for children with cancer receiving palliative care at home Sue Neilson1, Joe Kai2, Christine MacArthur1, Sheila Greenfield1 1School of Health and Population Sciences, University of Birmingham, Edgbaston, Birmingham. 2School of Graduate Medicine and Health, Medical School, University of Nottingham, Queen’s Medical Centre, Nottingham.

2. Background • General practitioners were at times uncertain of their role in paediatric palliative care and questioned whether their involvement had been beneficial to the child and family. • The rarity of childhood cancer deaths makes it difficult for GPs to develop or maintain palliative care knowledge and skills yet the GP is perceived by families as the gatekeeper for care within the community.

3. Aim To examine GP’s perception of their role in caring for an individual child with cancer receiving palliative care and compare with the families’ perceptions of their GP’s roles.

4. Methodology Formative findings: Establishing contact with the family Role uncertainty Role undertaken Formative conclusions

5. Methodology • Sample • Tape-recorded semi-structured interviews • Thematic framework analysis • Q methodology

6. Establishing contact with the family • Disappeared into system (GP 1) • Whilst we ... receive all the letters about the complicated things going on if you’ve not seen the patient for say four months .... after a while you lose the plot with the case ... (GP 4)

7. Establishing contact with the family I felt it would have been inappropriate for me to cold call the family because I felt out the loop ... (GP 4) It would have been nice to have been in the loop sometimes, not feel like I was being told everything by the family when I arrived.(GP 100 3)

8. Role uncertainty

9. Role uncertainty ... the difficulty is handing over large amounts of both personal and technical care to other people who know much more about it ... But all that stops in the aftermath so the fostering of the relationship between the family members and the GP is an important part of their care. (GP 1)

10. Role undertaken ...one of providing medication and support (GP 11) It is quite interesting how a visit like that ... may not end up with writing a prescription or a change of care ... I thought really I was more there as a parson in a sense ... (GP 8)

11. Role undertaken I think it is slightly awkward because very often there was absolutely nothing to do, you would sort of stand there and go everything seems alright he hasn’t changed much since last week. (GP 3)

12. Formative Findings GPs acknowledged that • they had a role to play • they could add value to the palliative care provision • they had gained from the experience • their involvement supported their continuing role with the child’s family GPs recognised their: • Lack of specialist knowledge • Role uncertainty

13. Formative conclusions • Engaging GPs needs to be more actively anticipated and negotiated at the transition to palliative care • Role clarity for all the professionals involved

14. Formative conclusions • Enhancing inter-professional collaboration both between primary and secondary care and within primary care may help • Examining the view of the families may inform GP roles