Pilar Famoso-Pérez
Biographic Data
| ID | 7931706 |
|---|---|
| NAME | Pilar Famoso-Pérez |
| GIVEN NAMES | Pilar |
| FAMILY NAME | Famoso-Pérez |
| SIGNATURE | FAMOSO-PÉREZ P |
| AFFILIATIONS | Madrid Health Service |
| VERIFIED | No |
| TOTAL WORKS | 2 |
| TOTAL CITATIONS | 0 |
| WORKS AS AUTHOR | 2 |
| WORKS AS EDITOR | 0 |
| FIRST PUBLICATION YEAR | 2018 |
| LATEST PUBLICATION YEAR | 2020 |
| H-INDEX | 0 |
Challenges Affecting Access to Health and Social Care Resources and Time Management among Parents of Children with Rett Syndrome
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 doc…
Living an Obstacle Course”
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 s…
No prominent works on this page.
Living an Obstacle Course”
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 s…
Challenges Affecting Access to Health and Social Care Resources and Time Management among Parents of Children with Rett Syndrome
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 doc…
Family and Disability Support Research (2 works) · Genetics and Neurodevelopmental Disorders (2 works) · Medicine (2 works) · Psychology (2 works) · Qualitative research (2 works) · Rett syndrome (2 works) · Sociology (2 works) · Anthropology (1 work) · Autism Spectrum Disorder Research (1 work) · Biology (1 work)