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

Abstract: 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.

Otras publicaciones de la misma revista o congreso con autores/as de la Universidad de Cantabria

 Fuente: Int. J. Environ. Res. Public Health Volume 16, Issue 1, January 2019, Article number 41

Editorial: MDPI

 Fecha de publicación: 01/01/2019

Nº de páginas: 13

Tipo de publicación: Artículo de Revista

DOI: 10.3390/ijerph16010041

ISSN: 1661-7827,1660-4601

Url de la publicación: https://dx.doi.org/10.3390/ijerph16010041

Autores/as

PALACIOS CEÑA, DOMINGO

FAMOSO PÉREZ, PILAR

SALOM MORENO, JAIME

CARRASCO GARRIDO, PILAR

PÉREZ CORRALES, JORGE

GÜEITA RODRIGUEZ, JAVIER