Cari Malcolm
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
Authors
Sally Adams
Gillian Anderson
Faith Gibson
Richard Hain
Anthea Morley
Liz Forbat
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 |