{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,6]],"date-time":"2026-04-06T18:35:20Z","timestamp":1775500520154,"version":"3.50.1"},"reference-count":39,"publisher":"MDPI AG","issue":"10","license":[{"start":{"date-parts":[[2023,5,16]],"date-time":"2023-05-16T00:00:00Z","timestamp":1684195200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Nutrients"],"abstract":"<jats:p>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\u2019s life. Investigating if parents are receiving the right support is important for continued care. Methodology: An online survey was distributed to explore parents\u2019 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 \u201cvery helpful\u201d 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.<\/jats:p>","DOI":"10.3390\/nu15102328","type":"journal-article","created":{"date-parts":[[2023,5,17]],"date-time":"2023-05-17T01:52:41Z","timestamp":1684288361000},"page":"2328","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Parent\u2019s Perception of the Types of Support Given to Families with an Infant with Phenylketonuria"],"prefix":"10.3390","volume":"15","author":[{"given":"Sophie","family":"Cassidy","sequence":"first","affiliation":[{"name":"School of Health Sciences, Faculty of Health, Education and Life Sciences, City South Campus, Birmingham City University, Birmingham B15 3TN, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7654-3621","authenticated-orcid":false,"given":"Sharon","family":"Evans","sequence":"additional","affiliation":[{"name":"Birmingham Women\u2019s and Children\u2019s NHS Foundation Trust, Birmingham B15 2TG, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alex","family":"Pinto","sequence":"additional","affiliation":[{"name":"Birmingham Women\u2019s and Children\u2019s NHS Foundation Trust, Birmingham B15 2TG, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2579-8699","authenticated-orcid":false,"given":"Anne","family":"Daly","sequence":"additional","affiliation":[{"name":"Birmingham Women\u2019s and Children\u2019s NHS Foundation Trust, Birmingham B15 2TG, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Catherine","family":"Ashmore","sequence":"additional","affiliation":[{"name":"Birmingham Women\u2019s and Children\u2019s NHS Foundation Trust, Birmingham B15 2TG, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Suzanne","family":"Ford","sequence":"additional","affiliation":[{"name":"NSPKU National Society for Phenylketonuria, Sheffield S12 9ET, UK"},{"name":"North Bristol NHS Trust, Bristol BS10 5NB, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sharon","family":"Buckley","sequence":"additional","affiliation":[{"name":"Department of Psychology, Faculty of Health, Psychology and Social Care, Manchester Campus, Manchester Metropolitan University, 53 Bonsall Street, Manchester M15 6GX, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anita","family":"MacDonald","sequence":"additional","affiliation":[{"name":"Birmingham Women\u2019s and Children\u2019s NHS Foundation Trust, Birmingham B15 2TG, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2023,5,16]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"162","DOI":"10.1186\/s13023-017-0685-2","article-title":"The complete European guidelines on phenylketonuria: Diagnosis and treatment","volume":"12","author":"Macdonald","year":"2017","journal-title":"Orphanet J. 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