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

Domingo Palacios-Ceña, Pilar Famoso-Pérez, Jaime Salom-Moreno, Pilar Carrasco-Garrido, Jorge Pérez-Corrales, Paula Paras-Bravo and Javier Güeita-Rodriguez
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Domingo Palacios-Ceña: Department of Physical Therapy, Occupational Therapy, Rehabilitation and Physical Medicine, Universidad Rey Juan Carlos, Alcorcón, 28922 Madrid, Spain
Pilar Famoso-Pérez: Department of Nursing, Servicio Madrileño de Salud, 28004 Madrid, Spain
Jaime Salom-Moreno: Department of Physiotherapy, Universidad Francisco Vitoria, 28223 Madrid, Spain
Pilar Carrasco-Garrido: Department of Medicine and Surgery, Psychology, Preventive Medicine and Public Health, Inmunology and Microbiology Medicine, Nursing and Stomatology, Universidad Rey Juan Carlos, Alcorcón, 28922 Madrid, Spain
Jorge Pérez-Corrales: Department of Physical Therapy, Occupational Therapy, Rehabilitation and Physical Medicine, Universidad Rey Juan Carlos, Alcorcón, 28922 Madrid, Spain
Paula Paras-Bravo: Department of Nursing, Universidad de Cantabria, 39005 Santander, Spain
Javier Güeita-Rodriguez: Department of Physical Therapy, Occupational Therapy, Rehabilitation and Physical Medicine, Universidad Rey Juan Carlos, Alcorcón, 28922 Madrid, Spain

IJERPH, 2018, vol. 16, issue 1, 1-13

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.

Keywords: rare disease; Rett syndrome; caregivers; qualitative research (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2018
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Persistent link: https://EconPapers.repec.org/RePEc:gam:jijerp:v:16:y:2018:i:1:p:41-:d:193037

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