Parents of Children Diagnosed with Congenital Anomalies or Cerebral Palsy
Identifying Needs in Interaction with Healthcare Services
Bibliographic Data
| ID | 15720187 |
|---|---|
| Authors | Ana João Santos (0000-0003-0556-5513, University of Lisbon, corresponding author), Paula Braz (0000-0003-3043-2827, National Institute of Health Dr. Ricardo Jorge), Teresa Folha (0000-0002-0437-2675, National Institute of Health Dr. Ricardo Jorge), Ausenda Machado (0000-0002-1849-1499, University of Lisbon), Carlos Matias Dias (0000-0002-0206-5874, University of Lisbon) |
| Year | 2023 |
| Volume | 10 |
| Issue | 6 |
| Pages | 1051-1051 |
| Publication date | 2023-06-12 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Children (JOURNAL) |
| Journal identifiers | ISSN: 2227-9067 • E-ISSN: 2227-9067 |
| Publisher | Multidisciplinary Digital Publishing Institute (PUBLISHER • CH) |
| DOI | 10.3390/children10061051 |
| PMID | 37371282 |
| OpenAlex | W4380630451 |
| Language | EN |
| Citations received | 1 |
| References cited | 6 |
The changes deriving from the birth of a child with a congenital anomaly (CA) or cerebral palsy (CP) imply, in many cases, an increased interaction with health services. A cross-sectional descriptive study was conducted with a convenience sample of parents of children diagnosed with four groups of CA (severe heart anomalies, spina bifida, orofacial clefts, and Down syndrome) and/or CP. A semistructured online questionnaire to be answered by parents was sent by web link to focal points of five parent associations and professional institutions. Data were analyzed through thematic content analysis (open-ended questions) and descriptive analysis (closed-ended questions). The results indicate consistency of responses of parents of children diagnosed with different conditions, namely with respect to the perception of health services and professionals. Closed and open-ended responses indicated three main topics in the interaction between health services and parenthood: information, coordinated and integrated responses, and support. The less positive outcomes suggest unmet information needs, while positive aspects include confidence in the care provided and the "training" received from health professionals
Cerebral palsy · Health care · Physical medicine and rehabilitation · Political science · Child and Adolescent Health · Ethics and Legal Issues in Pediatric Healthcare · Family and Disability Support Research · Medicine · Psychology · Pediatrics
| Unique citing works | 1 |
|---|---|
| Citations per year | 1 |
| Citation span | 2026 - 2026 (1) |
| Citation velocity | current |
| Highly cited | No |