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"Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome

dc.contributor.authorPalacios Ceña, Domingo
dc.contributor.authorFamoso Pérez, Pilar
dc.contributor.authorSalom Moreno, Jaime
dc.contributor.authorCarrasco Garrido, Pilar
dc.contributor.authorPérez Corrales, Jorge
dc.contributor.authorParás Bravo, Paula 
dc.contributor.authorGüeita Rodriguez, Javier
dc.contributor.otherUniversidad de Cantabriaes_ES
dc.date.accessioned2019-01-08T14:59:41Z
dc.date.available2019-01-08T14:59:41Z
dc.date.issued2019-01
dc.identifier.issn1661-7827
dc.identifier.issn1660-4601
dc.identifier.urihttp://hdl.handle.net/10902/15279
dc.description.abstractBackground: Rett syndrome has considerable effects on the quality of life of affected children, impairing everyday activities and potentially impacting the life of both the caregivers and the family. Our aim was to explore the experiences of a group of caregivers of children with Rett syndrome with regards to living and caring for their children. Methods: We conducted a qualitative case study to examine how 31 caregivers of children with Rett syndrome perceived living with their children. Data were collected through in-depth interviews, focus groups, researchers? field notes and caregivers? personal documents. A thematic analysis was performed following the Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline. Results: The experience of being a caregiver of a child with Rett syndrome was expressed as being akin to an ?obstacle course?, and was described via three main themes: (a) looking for answers, with two subthemes identified, namely ?the first symptoms?, and ?the need for a diagnosis?; (b) managing day to day life, with the subthemes ?applying treatments?, and ?learning to care?; and (c) money matters. Conclusions: Rett syndrome has a considerable impact on the lives of the caregivers involved. The health-care process and the management of economic resources are some of the aspects highlighted by caregivers. These findings have important implications for the planning of support services, health systems and health policies.es_ES
dc.format.extent13 p.es_ES
dc.language.isoenges_ES
dc.publisherMDPIes_ES
dc.rightsAttribution 4.0 Internationales_ES
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/*
dc.sourceInt. J. Environ. Res. Public Health Volume 16, Issue 1, January 2019, Article number 41es_ES
dc.subject.otherRare Diseasees_ES
dc.subject.otherRett Syndromees_ES
dc.subject.otherCaregiverses_ES
dc.subject.otherQualitative Researches_ES
dc.title"Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndromees_ES
dc.typeinfo:eu-repo/semantics/articlees_ES
dc.relation.publisherVersionhttps://dx.doi.org/10.3390/ijerph16010041es_ES
dc.rights.accessRightsopenAccesses_ES
dc.identifier.DOI10.3390/ijerph16010041
dc.type.versionpublishedVersiones_ES


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Attribution 4.0 InternationalExcepto si se señala otra cosa, la licencia del ítem se describe como Attribution 4.0 International