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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 |
| Date Deposited: | 8-May-2013 |
| 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 |
Files in This Item:
| File | Description | Size | Format | |
|---|---|---|---|---|
| Children with rare life-limiting conditions- The symptom Profile and Experience Final Report (amended 2013).pdf | Fulltext - Published Version | 1.6 MB | Adobe PDF | View/Open |
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