Challenges Affecting Access to Health and Social Care Resources and Time Management among Parents of Children with Rett Syndrome
A Qualitative Case Study
Bibliographic Data
| ID | 15501575 |
|---|---|
| Authors | Javier Güeita‐Rodríguez (0000-0003-4824-5915, Universidad Rey Juan Carlos), Pilar Famoso-Pérez (Madrid Health Service), Jaime Salom‐Moreno (Universidad Francisco de Vitoria), Jaime Salom-Moreno (Department of Physiotherapy, Universidad Francisco Vitoria, 28223 Madrid, Spain), Pilar Carrasco‐Garrido (0000-0003-3000-6748, Universidad Rey Juan Carlos), Jorge Pérez‐Corrales (0000-0003-3586-2623, Universidad Rey Juan Carlos, corresponding author), Domingo Palacios-Ceña (0000-0003-0669-6339, Universidad Rey Juan Carlos) |
| Year | 2020 |
| Volume | 17 |
| Issue | 12 |
| Pages | 4466-4466 |
| Publication date | 2020-06-21 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | International Journal of Environmental Research and Public Health (JOURNAL) |
| Journal identifiers | ISSN: 1661-7827 • E-ISSN: 1660-4601 |
| Publisher | Multidisciplinary Digital Publishing Institute (PUBLISHER • CH) |
| DOI | 10.3390/ijerph17124466 |
| PMID | 32575920 |
| OpenAlex | W3036709787 |
| Language | EN |
| Citations received | 4 |
| References cited | 44 |
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
Health care · Qualitative research · Rett syndrome · Sociology · Thematic analysis · Child Nutrition and Feeding Issues · Family and Disability Support Research · Genetics and Neurodevelopmental Disorders · Medicine · Nursing · Psychology
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| Citations per year | 0.67 |
|---|---|
| Citation span | 2020 - 2022 (3) |
| Highly cited | No |