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

Domingo Palacios-Ceña,Pilar Famoso-Pérez,Pilar Carrasco-Garrido,Jorge Pérez-Corrales,Javier Güeita-Rodriguez,Jaime Salom-Moreno

doi:10.3390/ijerph17124466

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.

Highlights

Rett syndrome (RS) is a rare genetic neurological condition, that affects about 1:10,000–15,000 of female infants [1]
It is necessary to explore certain questions: what are parents’ experiences regarding their ability to access appropriate care for their children with RS? What is their day-to-day experience with healthcare, and the social care system? This study examines the experiences of parents of children with RS in terms of the challenges related to access to care resources
The results of our study emphasize that access to the necessary resources in both health and social care is perceived as a “continuous struggle”, which translates into a waste of time and money for parents

Summary

Introduction

Rett syndrome (RS) is a rare genetic neurological condition, that affects about 1:10,000–15,000 of female infants [1]. This syndrome is characterized by gait abnormalities, acquired microcephaly, repetitive hand movements, loss of speech, and breathing disorders [1,2]. Access to adequate care in many rare disease patients is limited and presents barriers for access to treatment options, together with educational and/or social opportunities [5]. Many patients with rare diseases experience barriers in accessing medical care, and less than 10%

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