Please use this identifier to cite or link to this item: http://hdl.handle.net/1893/12772
Appears in Collections:Faculty of Health Sciences and Sport Research Reports
Title: The symptom profile and experience of children with rare life-limiting conditions: Perspectives of their families and key health professionals
Author(s): Malcolm, Cari
Adams, Sally
Anderson, Gillian
Gibson, Faith
Hain, Richard
Morley, Anthea
Forbat, Liz
Contact Email: elizabeth.forbat1@stir.ac.uk
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
Keywords: Advance care planning
Batten disease
expertise
extended family
family
Morquio disease
progressive life-limiting
relationships
Sanfilippo disease
siblings
symptoms
Issue Date: 2011
Publisher: Cancer Care Research Centre, University of Stirling
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.
Type: Research Report
URL: http://www.bdfa-uk.org.uk/other-batten-disease-research/symptom-profile-and-experience-children-rare-life-limiting-conditions
URI: http://hdl.handle.net/1893/12772
Rights: ©Children’s Hospice Association of Scotland and University of Stirling 2013 All materials in this Report (including without limitation all models, text, images, logos, etc.) are ©Children’s Hospice Association of Scotland and University of Stirling 2013: Children’s Hospice Association of Scotland and University of Stirling own the copyright to this Report. This Report may not be copied or shared with any third party without inclusion of this copyright declaration. The Report is published for information only and for no other use without the express prior written permission from Maria McGill at MariaMcGill@chas.org.uk or Liz Forbat at elizabeth.forbat@stir.ac.uk.
Affiliation: Cancer Care Research Centre - LEGACY
Health Sciences Research - Stirling - LEGACY
Cancer Care Research Centre - LEGACY
Great Ormond Street Hospital for Sick Children
Cardiff University
University of Stirling
Health Sciences Research - Stirling - LEGACY

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