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The Spectrum of Children's Palliative Care Needs: a classification framework for children with life-limiting or life-threatening conditions
  1. Karen L Shaw1,
  2. Lynda Brook2,
  3. Christine Mpundu-Kaambwa3,
  4. Nicky Harris4,
  5. Susie Lapwood5 and
  6. Duncan Randall6
  1. 1School of Health and Population Sciences, University of Birmingham, Birmingham, West Midlands, UK
  2. 2Alder Hey Children's Hospital Specialist Palliative Care Team, Alder Hey Children's Hospital, Liverpool, UK
  3. 3The Research and Evaluation Unit, University of Adelaide, North Adelaide, Australia
  4. 4Charlton Farm, Children's Hospice South West, Bristol, UK
  5. 5Helen and Douglas House Hospices for Children and Young adults and Oxford Radcliffe Hospitals Trust, Oxford, UK
  6. 6School of Nursing, Midwifery, Social Work & Social Sciences,University of Salford, Salford, UK
  1. Correspondence to Dr Karen Shaw, School of Health and Population Sciences, College of Medical and Dental Sciences, University of Birmingham, 52 Pritchatts Road, Edgbaston, Birmingham B15 2TT, UK; k.l.shaw{at}bham.ac.uk

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.

  • Paediatrics
  • Palliative Care
  • Prognosis
  • Received 13 November 2012.
  • Revision received 17 October 2013.
  • Accepted 17 December 2013.

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  • Received 13 November 2012.
  • Revision received 17 October 2013.
  • Accepted 17 December 2013.
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