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

• Children with rare life-limiting conditions- The symptom Profile and Experience Final Report (amended 2013).pdf