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Research Report

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

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. C H A S - Childrens Hospice Association Scotland. Cancer Care Research Centre, University of Stirling. http://www.bdfa-uk.org.uk/other-batten-disease-research/symptom-profile-and-experience-children-rare-life-limiting-conditions

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.

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

StatusPublished
Author(s)Malcolm, Cari; Adams, Sally; Anderson, Gillian; Gibson, Faith; Hain, Richard; Morley, Anthea; Forbat, Liz
Publication date31/12/2011
Publication date online2011
URLhttp://hdl.handle.net/1893/12772
PublisherCancer Care Research Centre, University of Stirling
Publisher URLhttp://www.bdfa-uk.org.uk/…iting-conditions
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