The symptom profile and experience of children with rare life-limiting conditions: perspectives of their families and key health professionals

Malcolm, Cari; Adams, Sally; Anderson, Gillian; Gibson, Faith; Hain, Richard; Morley, Anthea; Forbat, Liz

Abstract

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.

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

• Report Type: Research Report
• Publication Date: 2011
• Deposit Date: Aug 1, 2017
• Pages: 1-164
• Keywords: Advance care planning; Batten disease; expertise; extended family; family; Morquio disease; progressive life-limiting; relationships; Sanfilippo disease; siblings; symptoms,
• Public URL: http://researchrepository.napier.ac.uk/Output/970540