Please use this identifier to cite or link to this item: http://hdl.handle.net/1893/17857
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dc.contributor.authorMalcolm, Carien_UK
dc.contributor.authorGibson, Faithen_UK
dc.contributor.authorAdams, Sallyen_UK
dc.contributor.authorAnderson, Gillianen_UK
dc.contributor.authorForbat, Lizen_UK
dc.date.accessioned2018-04-23T22:44:27Z-
dc.date.available2018-04-23T22:44:27Z-
dc.date.issued2014-09en_UK
dc.identifier.urihttp://hdl.handle.net/1893/17857-
dc.description.abstractMucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterised by progressive and permanent physical and cognitive decline. The impact of such conditions on families, and notably on siblings, has not yet been described or documented. This paper presents data from a UK-wide study that sought to understand the family experience of supporting a child with the rare degenerative LLCs of MPS and Batten disease. The aim of this paper is to report sibling experiences related to these rare degenerative and progressive conditions, in order to inform the future development of supportive interventions. Eight siblings of children with MPS (n = 7) and Batten Disease (n = 1) participated in semi-structured qualitative interviews. A card sort technique was utilised to support and engage the children. Siblings are clearly impacted emotionally, pragmatically and relationally by the ill health of another child in the family. The data indicate four key themes which demonstrate impacts on siblings: perceptions of the condition and its symptoms, impact on daily life, emotional consequences and ways of coping. Siblings often had considerable knowledge of the condition and took on important roles in symptom management. However, these experiences were in the context of managing relationships within the family (often protecting parents from an awareness of how much they knew) and relationships at school (including distraction from learning and being bullied by peers). The data highlight how sibling experiences are generated through a combination of negative disability discourses and support through peers and family members. The data indicate how these features shift as a consequence of witnessing the advancement of their brother's or sister's condition and the emotional sequelae of disease progression. Exploration of siblings' experiences of living with such rare progressive and degenerative LLCs suggest the focus of interventions to support this group should address their emotional health and ways to overcome isolation and build connections with other siblings who share their unique experiences. Critically, the data suggest that sibling support should be cognisant of the trajectory of the illness as well as the family, school and peer relational contexts that siblings inhabit.en_UK
dc.language.isoenen_UK
dc.publisherSAGE Publications for the Association of British Paediatric Nursesen_UK
dc.relationMalcolm C, Gibson F, Adams S, Anderson G & Forbat L (2014) A relational understanding of sibling experiences of children with rare life-limiting conditions: findings from a qualitative study. Journal of Child Health Care, 18 (3), pp. 230-240. https://doi.org/10.1177/1367493513485825en_UK
dc.rightsThe publisher does not allow this work to be made publicly available in this Repository. Please use the Request a Copy feature at the foot of the Repository record to request a copy directly from the author. You can only request a copy if you wish to use this work for your own research or private study.en_UK
dc.rights.urihttp://www.rioxx.net/licenses/under-embargo-all-rights-reserveden_UK
dc.subjectPalliative careen_UK
dc.subjectqualitative approachesen_UK
dc.subjectsibling(s)en_UK
dc.titleA relational understanding of sibling experiences of children with rare life-limiting conditions: findings from a qualitative studyen_UK
dc.typeJournal Articleen_UK
dc.rights.embargodate2999-12-31en_UK
dc.rights.embargoreason[a relational understanding of sibling experiences.pdf] The publisher does not allow this work to be made publicly available in this Repository therefore there is an embargo on the full text of the work.en_UK
dc.identifier.doi10.1177/1367493513485825en_UK
dc.identifier.pmid23754839en_UK
dc.citation.jtitleJournal of Child Health Careen_UK
dc.citation.issn1741-2889en_UK
dc.citation.issn1367-4935en_UK
dc.citation.volume18en_UK
dc.citation.issue3en_UK
dc.citation.spage230en_UK
dc.citation.epage240en_UK
dc.citation.publicationstatusPublisheden_UK
dc.citation.peerreviewedRefereeden_UK
dc.type.statusVoR - Version of Recorden_UK
dc.author.emailelizabeth.forbat1@stir.ac.uken_UK
dc.contributor.affiliationHealth Sciences Research - Stirling - LEGACYen_UK
dc.contributor.affiliationGreat Ormond Street Hospital for Sick Childrenen_UK
dc.contributor.affiliationHealth Sciences Research - Stirling - LEGACYen_UK
dc.contributor.affiliationCancer Care Research Centre - LEGACYen_UK
dc.contributor.affiliationHealth Sciences Research - Stirling - LEGACYen_UK
dc.identifier.isiWOS:000341504500004en_UK
dc.identifier.scopusid2-s2.0-84906737006en_UK
dc.identifier.wtid887923en_UK
dc.contributor.orcid0000-0002-7218-5775en_UK
dcterms.dateAccepted2014-09-30en_UK
dc.date.filedepositdate2013-12-03en_UK
rioxxterms.apcnot requireden_UK
rioxxterms.typeJournal Article/Reviewen_UK
rioxxterms.versionVoRen_UK
local.rioxx.authorMalcolm, Cari|en_UK
local.rioxx.authorGibson, Faith|en_UK
local.rioxx.authorAdams, Sally|en_UK
local.rioxx.authorAnderson, Gillian|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.freetoreaddate2999-12-31en_UK
local.rioxx.licencehttp://www.rioxx.net/licenses/under-embargo-all-rights-reserved||en_UK
local.rioxx.filenamea relational understanding of sibling experiences.pdfen_UK
local.rioxx.filecount1en_UK
local.rioxx.source1367-4935en_UK
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