Challenges Affecting Access to Health and Social Care Resources and Time Management among Parents of Children with Rett Syndrome: A Qualitative Case Study

Javier Güeita-Rodriguez, Pilar Famoso-Pérez, Jaime Salom-Moreno, Pilar Carrasco-Garrido, Jorge Pérez-Corrales and Domingo Palacios-Ceña
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Javier Güeita-Rodriguez: Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Avenida Atenas s/n, 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 Medical Specialities and Public Health, Universidad Rey Juan Carlos, Alcorcón, 28922 Madrid, Spain
Jorge Pérez-Corrales: Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Avenida Atenas s/n, Alcorcón, 28922 Madrid, Spain
Domingo Palacios-Ceña: Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Avenida Atenas s/n, Alcorcón, 28922 Madrid, Spain

IJERPH, 2020, vol. 17, issue 12, 1-16

Abstract: Rare diseases face serious sustainability challenges regarding the distribution of resources geared at health and social needs. Our aim was to describe the barriers experienced by parents of children with Rett Syndrome for accessing care resources. A qualitative case study was conducted among 31 parents of children with Rett syndrome. Data were collected through in-depth interviews, focus groups, researchers’ field notes and parents’ personal documents. A thematic analysis was performed and the Standards for Reporting Qualitative Research (SRQR) guidelines were followed. Three main themes emerged from the data: (a) essential health resources; (b) bureaucracy and social care; and (c) time management constraints. Parents have difficulties accessing appropriate health services for their children. Administrative obstacles exist for accessing public health services, forcing parents to bear the financial cost of specialized care. Time is an essential factor, which conditions the organization of activities for the entire family. Qualitative research offers insight into how parents of children with Rett syndrome experience access to resources and may help improve understanding of how Rett syndrome impacts the lives of both the children and their parents.

Keywords: health services accessibility; parents; rare disease; Rett syndrome; qualitative research (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2020
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (3)

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