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Please use this identifier to cite or link to this item: http://hdl.handle.net/1893/12772
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dc.contributor.authorMalcolm, Carien_UK
dc.contributor.authorAdams, Sallyen_UK
dc.contributor.authorAnderson, Gillianen_UK
dc.contributor.authorGibson, Faithen_UK
dc.contributor.authorHain, Richarden_UK
dc.contributor.authorMorley, Antheaen_UK
dc.contributor.authorForbat, Lizen_UK
dc.date.accessioned2018-02-09T02:26:30Z-
dc.date.available2018-02-09T02:26:30Z-
dc.date.issued2011en_UK
dc.identifier.urihttp://hdl.handle.net/1893/12772-
dc.description.abstractThis 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.en_UK
dc.language.isoenen_UK
dc.publisherCancer Care Research Centre, University of Stirlingen_UK
dc.relationMalcolm 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-conditionsen_UK
dc.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.en_UK
dc.subjectAdvance care planningen_UK
dc.subjectBatten diseaseen_UK
dc.subjectexpertiseen_UK
dc.subjectextended familyen_UK
dc.subjectfamilyen_UK
dc.subjectMorquio diseaseen_UK
dc.subjectprogressive life-limitingen_UK
dc.subjectrelationshipsen_UK
dc.subjectSanfilippo diseaseen_UK
dc.subjectsiblingsen_UK
dc.subjectsymptomsen_UK
dc.titleThe symptom profile and experience of children with rare life-limiting conditions: Perspectives of their families and key health professionalsen_UK
dc.typeResearch Reporten_UK
dc.contributor.sponsorC H A S - Childrens Hospice Association Scotlanden_UK
dc.citation.publicationstatusPublisheden_UK
dc.type.statusVoR - Version of Recorden_UK
dc.identifier.urlhttp://www.bdfa-uk.org.uk/other-batten-disease-research/symptom-profile-and-experience-children-rare-life-limiting-conditionsen_UK
dc.author.emailelizabeth.forbat1@stir.ac.uken_UK
dc.citation.date31/12/2011en_UK
dc.contributor.affiliationCancer Care Research Centre - LEGACYen_UK
dc.contributor.affiliationHealth Sciences Research - Stirling - LEGACYen_UK
dc.contributor.affiliationCancer Care Research Centre - LEGACYen_UK
dc.contributor.affiliationGreat Ormond Street Hospital for Sick Childrenen_UK
dc.contributor.affiliationCardiff Universityen_UK
dc.contributor.affiliationUniversity of Stirlingen_UK
dc.contributor.affiliationHealth Sciences Research - Stirling - LEGACYen_UK
dc.identifier.wtid706899en_UK
dc.contributor.orcid0000-0002-7218-5775en_UK
dcterms.dateAccepted2011-12-31en_UK
dc.date.filedepositdate2013-05-08en_UK
rioxxterms.typeTechnical Reporten_UK
rioxxterms.versionVoRen_UK
local.rioxx.authorMalcolm, Cari|en_UK
local.rioxx.authorAdams, Sally|en_UK
local.rioxx.authorAnderson, Gillian|en_UK
local.rioxx.authorGibson, Faith|en_UK
local.rioxx.authorHain, Richard|en_UK
local.rioxx.authorMorley, Anthea|en_UK
local.rioxx.authorForbat, Liz|0000-0002-7218-5775en_UK
local.rioxx.projectInternal Project|University of Stirling|https://isni.org/isni/0000000122484331en_UK
local.rioxx.freetoreaddate2013-05-08en_UK
local.rioxx.licencehttp://www.rioxx.net/licenses/all-rights-reserved|2013-05-08|en_UK
local.rioxx.filenameChildren with rare life-limiting conditions- The symptom Profile and Experience Final Report (amended 2013).pdfen_UK
local.rioxx.filecount1en_UK
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