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

Background: 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...

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Autores: Palacios Ceña, Domingo, Famoso Pérez, Pilar, Salom Moreno, Jaime, Carrasco Garrido, Pilar, Pérez Corrales, Jorge, Parás Bravo, Paula|||0000-0001-7745-3006, Güeita Rodriguez, Javier
Tipo de recurso: artículo
Fecha de publicación:2019
País:España
Institución:Universidad de Cantabria (UC)
Repositorio:UCrea Repositorio Abierto de la Universidad de Cantabria
Idioma:inglés
OAI Identifier:oai:repositorio.unican.es:10902/15279
Acceso en línea:http://hdl.handle.net/10902/15279
Access Level:acceso abierto
Palabra clave:Rare Disease
Rett Syndrome
Caregivers
Qualitative Research
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spelling "Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett SyndromePalacios Ceña, DomingoFamoso Pérez, PilarSalom Moreno, JaimeCarrasco Garrido, PilarPérez Corrales, JorgeParás Bravo, Paula|||0000-0001-7745-3006Güeita Rodriguez, JavierRare DiseaseRett SyndromeCaregiversQualitative ResearchBackground: 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.MDPIUniversidad de Cantabria20192019-01-01journal articlehttp://purl.org/coar/resource_type/c_6501NAhttp://purl.org/coar/version/c_be7fb7dd8ff6fe43info:eu-repo/semantics/articlehttp://hdl.handle.net/10902/15279Int. J. Environ. Res. Public Health Volume 16, Issue 1, January 2019, Article number 41reponame:UCrea Repositorio Abierto de la Universidad de Cantabriainstname:Universidad de Cantabria (UC)Inglésengopen accesshttp://purl.org/coar/access_right/c_abf2Attribution 4.0 Internationalhttp://creativecommons.org/licenses/by/4.0/info:eu-repo/semantics/openAccessoai:repositorio.unican.es:10902/152792026-06-02T12:39:31Z
dc.title.none.fl_str_mv "Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome
title "Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome
spellingShingle "Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome
Palacios Ceña, Domingo
Rare Disease
Rett Syndrome
Caregivers
Qualitative Research
title_short "Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome
title_full "Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome
title_fullStr "Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome
title_full_unstemmed "Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome
title_sort "Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome
dc.creator.none.fl_str_mv Palacios Ceña, Domingo
Famoso Pérez, Pilar
Salom Moreno, Jaime
Carrasco Garrido, Pilar
Pérez Corrales, Jorge
Parás Bravo, Paula|||0000-0001-7745-3006
Güeita Rodriguez, Javier
author Palacios Ceña, Domingo
author_facet Palacios Ceña, Domingo
Famoso Pérez, Pilar
Salom Moreno, Jaime
Carrasco Garrido, Pilar
Pérez Corrales, Jorge
Parás Bravo, Paula|||0000-0001-7745-3006
Güeita Rodriguez, Javier
author_role author
author2 Famoso Pérez, Pilar
Salom Moreno, Jaime
Carrasco Garrido, Pilar
Pérez Corrales, Jorge
Parás Bravo, Paula|||0000-0001-7745-3006
Güeita Rodriguez, Javier
author2_role author
author
author
author
author
author
dc.contributor.none.fl_str_mv Universidad de Cantabria
dc.subject.none.fl_str_mv Rare Disease
Rett Syndrome
Caregivers
Qualitative Research
topic Rare Disease
Rett Syndrome
Caregivers
Qualitative Research
description Background: 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.
publishDate 2019
dc.date.none.fl_str_mv 2019
2019-01-01
dc.type.none.fl_str_mv journal article
http://purl.org/coar/resource_type/c_6501
NA
http://purl.org/coar/version/c_be7fb7dd8ff6fe43
dc.type.openaire.fl_str_mv info:eu-repo/semantics/article
format article
dc.identifier.none.fl_str_mv http://hdl.handle.net/10902/15279
url http://hdl.handle.net/10902/15279
dc.language.none.fl_str_mv Inglés
eng
language_invalid_str_mv Inglés
language eng
dc.rights.none.fl_str_mv open access
http://purl.org/coar/access_right/c_abf2
Attribution 4.0 International
http://creativecommons.org/licenses/by/4.0/
dc.rights.openaire.fl_str_mv info:eu-repo/semantics/openAccess
rights_invalid_str_mv open access
http://purl.org/coar/access_right/c_abf2
Attribution 4.0 International
http://creativecommons.org/licenses/by/4.0/
eu_rights_str_mv openAccess
dc.publisher.none.fl_str_mv MDPI
publisher.none.fl_str_mv MDPI
dc.source.none.fl_str_mv Int. J. Environ. Res. Public Health Volume 16, Issue 1, January 2019, Article number 41
reponame:UCrea Repositorio Abierto de la Universidad de Cantabria
instname:Universidad de Cantabria (UC)
instname_str Universidad de Cantabria (UC)
reponame_str UCrea Repositorio Abierto de la Universidad de Cantabria
collection UCrea Repositorio Abierto de la Universidad de Cantabria
repository.name.fl_str_mv
repository.mail.fl_str_mv
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score 15.301603

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