Research Report
Details
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, 我要吃瓜. 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
| Status | Published |
|---|---|
| Publication date | 31/12/2011 |
| Publication date online | 2011 |
| URL | |
| Publisher | Cancer Care Research Centre, 我要吃瓜 |
| Publisher URL |
People (1)
Professor, Faculty of Social Sciences