The Spectrum of Children's Palliative Care Needs: a classification framework for children with life-limiting or life-threatening conditions

Research output: Contribution to journalArticle

Authors

  • Lynda Brook
  • Christine Mpundu-Kaambwa
  • Nicky Harris
  • Susie Lapwood

Abstract

OBJECTIVES: This paper examined the potential of a new classification framework, The Spectrum of Children's Palliative Care Needs, to facilitate identification of children with palliative care needs for the purposes of minimum data set collection and population needs assessment.

METHODS: Health and social care professionals (n=50) in a range of paediatric palliative care settings applied The Spectrum to (i) clinical vignettes and (ii) consecutive children on their caseloads. They also provided confidence ratings and written comments about their experiences. Inter-rater reliability, conceptual validity, acceptability, feasibility and sustainability were examined. A subset of professionals (n=9) also participated in semistructured telephone interviews to provide further insight.

RESULTS: Inter-rater reliability for the vignettes (κ=0.255) was fair. However, professionals were more confident applying The Spectrum to their caseloads, which included children (n=74) with a range of life-limiting/life-threatening conditions. The Spectrum made conceptual sense in relation to these children and was considered to offer a meaningful way to define the eligible population in service mapping. Benefits for clinical work (eg, facilitating patient review, workload management, clinical audit) and research were also identified. However, important threats to reliability were highlighted.

CONCLUSIONS: Preliminary assessment of The Spectrum confirms its potential to promote consistent data set collection in children's palliative care. The results have been used to produce a revised version and user guidelines to address issues raised by participants. However, further research is required to further validate the framework and establish its relevance to families' self-defined needs.

Bibliographic note

Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Details

Original languageEnglish
Pages (from-to)249-58
Number of pages10
JournalBMJ Supportive & Palliative Care
Volume5
Issue number3
Publication statusPublished - Sep 2015