The spectrum of children's palliative care needs: A classification framework for children with life-limiting or life-threatening conditions

Karen L. Shaw, Lynda Brook, Christine Mpundu-Kaambwa, Nicky Harris, Susie Lapwood, Duncan Randall

Research output: Contribution to journalArticle

4 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)249-258
Number of pages10
JournalBMJ Supportive and Palliative Care
Volume5
Issue number3
DOIs
Publication statusPublished - Sep 2015
Externally publishedYes

Keywords

  • children
  • palliative care

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