Caring for Children Dying from Cancer at Home: a Qualitative Study of the Experience of Primary Care Practitioners

Neilson, Susan, Kai, J., MacArthur, C. and Greenfield, S. (2011) Caring for Children Dying from Cancer at Home: a Qualitative Study of the Experience of Primary Care Practitioners. Family Practice, 28 (5). pp. 545-553. ISSN Print 0263-2136 Online 1460-2229

Abstract

Background. The rarity of childhood cancers makes providing palliative care in the community
an unusual event for primary care practitioners. Providing this care requires effective interprofessional
collaboration with the team that forms to provide the care often working together
for the first and only time.
Objective. To explore the experiences of primary care practitioners following their involvement
in the palliative care of a child with cancer at home.
Methods. The study design was a community-based qualitative study. The study location was
the West Midlands region. Purposeful sample of GPs and community nurses involved in
providing palliative care to 12 children. One-to-one in-depth interviews with 47 primary care professionals
(10 GPs and 37 community nurses) and 5 facilitated case discussions were undertaken.
Field notes were documented and grounded theory data analysis undertaken:
chronological comparative data analysis identifying generated themes.
Results. GPs had minimal input into the preceding care of children undergoing treatment for
cancer but sought to re-establish their role at the child’s transition to palliative care. GPs felt they
had a role to play and could add value to this phase of care, highlighted their continuing role with
the child’s family and acknowledged that they had gained from the experience of contributing.
However, lack of specialist knowledge and uncertainty about their role within the team made this
more challenging. In contrast, community nurses were routinely involved in both active
treatment and palliation care phases. There was little evidence of collaboration between the
specialist and primary care professionals involved. There was considerable variation in out of
hours provision across cases.
Conclusions. Engaging primary care practitioners needs to be more actively anticipated and
negotiated at the transition to palliation. Variation in out of hours care is another cause for
concern. Enhancing inter-professional collaboration and planning during both active and palliative
care phases may help.
Keywords. Cancer, family medicine, palliative care, paediatric.

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