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dc.contributor.authorDowns, Jennepher
dc.contributor.authorTorode, I.
dc.contributor.authorEllaway, C.
dc.contributor.authorJacoby, P.
dc.contributor.authorBunting, C.
dc.contributor.authorWong, K.
dc.contributor.authorChristodoulou, J.
dc.contributor.authorLeonard, H.
dc.date.accessioned2017-01-30T11:06:57Z
dc.date.available2017-01-30T11:06:57Z
dc.date.created2016-02-01T00:47:06Z
dc.date.issued2016
dc.identifier.citationDowns, J. and Torode, I. and Ellaway, C. and Jacoby, P. and Bunting, C. and Wong, K. and Christodoulou, J. et al. 2016. Family satisfaction following spinal fusion in Rett syndrome. Developmental Neurorehabilitation. 19 (1): pp. 31-37.
dc.identifier.urihttp://hdl.handle.net/20.500.11937/8474
dc.identifier.doi10.3109/17518423.2014.898107
dc.description.abstract

PURPOSE: We evaluated family satisfaction following spinal fusion in girls with Rett syndrome. METHODS: Families participating in the population-based and longitudinal Australian Rett Syndrome Database whose daughter had undergone spinal fusion provided data on satisfaction overall, care processes and expected changes in health and function. Content analysis of responses to open-ended questions was conducted. RESULTS: Families reported high levels of overall satisfaction and consistently high ratings in relation to surgical and ICU care. Outstanding clinical care and the development of strong partnerships with clinical staff were much appreciated by families, whereas poor information exchange and inconsistent care caused concerns. CONCLUSIONS: Family satisfaction is an important outcome within a patient-centred quality of care framework. Our findings suggest strategies to inform the delivery of care in relation to spinal fusion for Rett syndrome and could also inform the hospital care of other children with disability and a high risk of hospitalization.

dc.titleFamily satisfaction following spinal fusion in Rett syndrome
dc.typeJournal Article
dcterms.source.volume19
dcterms.source.number1
dcterms.source.startPage31
dcterms.source.endPage37
dcterms.source.titleDev Neurorehabil
curtin.note

This is an Author's Original Manuscript of an article published by Taylor & Francis in Developmental Neurorehabilitation on 11/04/2014 available online at <a href="http://www.tandfonline.com/10.3109/17518423.2014.898107">http://www.tandfonline.com/10.3109/17518423.2014.898107</a>

curtin.departmentSchool of Physiotherapy and Exercise Science
curtin.accessStatusOpen access


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