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
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.
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|
|Deposit Date||Aug 1, 2017|
|Keywords||Advance care planning; Batten disease; expertise; extended family; family; Morquio disease; progressive life-limiting; relationships; Sanfilippo disease; siblings; symptoms,|