Research Output
The symptom profile and experience of children with rare life-limiting conditions: perspectives of their families and key health professionals
  This report documents a mixed-method study examining the symptom profile and family experience of two rare life-limiting conditions. Data was collected across the UK, using a symptom diary designed for the study and qualitative interviews, informed by Grounded Theory.

  • Type:

    Research Report

  • Date:

    31 December 2011

  • Publication Status:

    Published

  • Library of Congress:

    RJ Pediatrics

  • Dewey Decimal Classification:

    618 Gynecology, obstetrics, pediatrics & geriatrics

  • Funders:

    University of Stirling

Citation

Malcolm, C., Adams, S., Anderson, G., Gibson, F., Hain, R., Morley, A., & Forbat, L. (2011). The symptom profile and experience of children with rare life-limiting conditions: perspectives of their families and key health professionals. Stirling: University of Stirling

Authors

Keywords

Advance care planning; Batten disease; expertise; extended family; family; Morquio disease; progressive life-limiting; relationships; Sanfilippo disease; siblings; symptoms,

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