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- Title
Parent's Perception of the Types of Support Given to Families with an Infant with Phenylketonuria.
- Authors
Cassidy, Sophie; Evans, Sharon; Pinto, Alex; Daly, Anne; Ashmore, Catherine; Ford, Suzanne; Buckley, Sharon; MacDonald, Anita
- Abstract
Background: A diagnosis of phenylketonuria (PKU) in an infant is a devastating and overwhelming event for their parents. Providing appropriate information and support is paramount, especially at the beginning of a child's life. Investigating if parents are receiving the right support is important for continued care. Methodology: An online survey was distributed to explore parents' perceptions of current support and information provided by their healthcare provider and to rate sources of other support (n = 169 participants). Results: Dietitians received the highest (85%) rate of "very helpful" support. Overall, parents found Facebook to be helpful for support but had mixed reactions when asked if healthcare professionals (HCPs) should provide advice as part of the groups. When rating the most effective learning methods, the top three were 1:1 teaching sessions (n = 109, 70%), picture books (n = 73, 50%), and written handouts (n = 70, 46%). Conclusion: Most parents are happy with the support and information they receive from their dietitian but required more support from other HCPs. Facebook groups provide parents with the social support that HCPs and their family may be unable to offer, suggesting a place for social media in future PKU care.
- Subjects
PHENYLKETONURIA diagnosis; PARENT attitudes; SOCIAL support; FACEBOOK (Web resource); CROSS-sectional method; DIETITIANS; SOCIAL media; FAMILY health; MEDICAL personnel; SURVEYS; PATIENTS' attitudes; PSYCHOSOCIAL factors; DESCRIPTIVE statistics; FAMILY services; NUTRITIONISTS; CHILDREN
- Publication
Nutrients, 2023, Vol 15, Issue 10, p2328
- ISSN
2072-6643
- Publication type
Article
- DOI
10.3390/nu15102328