FRINK Linked Data Fragments server

Matches in SemOpenAlex for { <https://semopenalex.org/work/W4310588861> ?p ?o ?g. }

• W4310588861 endingPage "494" @default.
• W4310588861 startingPage "486" @default.
• W4310588861 abstract "Cystic fibrosis (CF), a genetic disease and chronic illness, affects multiple organ systems and requires exceptional medical care and treatment. Few studies have assessed the diagnosis disclosure process to well children when their sibling(s) have CF, and none have evaluated the association between parental knowledge of CF and the disclosure of CF. The objectives of this study were to assess parental understanding of CF, demonstrate the most commonly shared topics and their frequencies of discussion with well children, and identify associations between parental understanding of CF and aspects of the disclosure process to well children. Parents were recruited from CF support organizations and asked to complete an online, anonymous survey. Individuals were eligible to participate in the study if they had at least one living child with CF and at least one living child without CF. Completed surveys from 48 individuals revealed that most parents began discussing a sibling's diagnosis of CF with the first-born well child at 5.4 years old. Topics related to CF were discussed openly and as needed with their well children (n = 44). The most frequently discussed topic, and the topic ranked most important (1.93 of 5, SD: 1.17) by 40 participants (90.9%), was medical concerns and treatment for CF. Fewer parents (n = 18, 40.9%) reported discussing the financial impact of CF, and many ranked this as least important to share (4.64 of 5, SD: 0.75). The CF knowledge assessment revealed that participants were well-informed about CF, with a mean total score of 8.9/10 (SD: 0.91). There were no associations between CF knowledge assessment scores, education level, income, and the topics discussed with well children. These results can be utilized by genetic counselors and other healthcare specialists in discussion with parents about the disclosure process of a diagnosis of CF to well children." @default.
• W4310588861 created "2022-12-12" @default.
• W4310588861 creator A5008986433 @default.
• W4310588861 creator A5033597968 @default.
• W4310588861 creator A5036037206 @default.
• W4310588861 creator A5048648970 @default.
• W4310588861 date "2022-12-02" @default.
• W4310588861 modified "2023-09-27" @default.
• W4310588861 title "Exploring parental cystic fibrosis disclosure to well children" @default.
• W4310588861 cites W1599301856 @default.
• W4310588861 cites W1837900954 @default.
• W4310588861 cites W1993852457 @default.
• W4310588861 cites W1999366207 @default.
• W4310588861 cites W2014119318 @default.
• W4310588861 cites W2025699298 @default.
• W4310588861 cites W2038707668 @default.
• W4310588861 cites W2044211581 @default.
• W4310588861 cites W2080214153 @default.
• W4310588861 cites W2119888204 @default.
• W4310588861 cites W2147695741 @default.
• W4310588861 cites W2152514555 @default.
• W4310588861 cites W2159225851 @default.
• W4310588861 cites W2326476702 @default.
• W4310588861 cites W2789405168 @default.
• W4310588861 cites W2906723012 @default.
• W4310588861 cites W2916452179 @default.
• W4310588861 cites W3039261725 @default.
• W4310588861 cites W3042386137 @default.
• W4310588861 doi "https://doi.org/10.1002/jgc4.1658" @default.
• W4310588861 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/36458380" @default.
• W4310588861 hasPublicationYear "2022" @default.
• W4310588861 type Work @default.
• W4310588861 citedByCount "0" @default.
• W4310588861 crossrefType "journal-article" @default.
• W4310588861 hasAuthorship W4310588861A5008986433 @default.
• W4310588861 hasAuthorship W4310588861A5033597968 @default.
• W4310588861 hasAuthorship W4310588861A5036037206 @default.
• W4310588861 hasAuthorship W4310588861A5048648970 @default.
• W4310588861 hasConcept C118552586 @default.
• W4310588861 hasConcept C126322002 @default.
• W4310588861 hasConcept C138496976 @default.
• W4310588861 hasConcept C138816342 @default.
• W4310588861 hasConcept C142724271 @default.
• W4310588861 hasConcept C15744967 @default.
• W4310588861 hasConcept C187212893 @default.
• W4310588861 hasConcept C2776194465 @default.
• W4310588861 hasConcept C2776938444 @default.
• W4310588861 hasConcept C2779134260 @default.
• W4310588861 hasConcept C512399662 @default.
• W4310588861 hasConcept C54355233 @default.
• W4310588861 hasConcept C71924100 @default.
• W4310588861 hasConcept C80227256 @default.
• W4310588861 hasConcept C86803240 @default.
• W4310588861 hasConceptScore W4310588861C118552586 @default.
• W4310588861 hasConceptScore W4310588861C126322002 @default.
• W4310588861 hasConceptScore W4310588861C138496976 @default.
• W4310588861 hasConceptScore W4310588861C138816342 @default.
• W4310588861 hasConceptScore W4310588861C142724271 @default.
• W4310588861 hasConceptScore W4310588861C15744967 @default.
• W4310588861 hasConceptScore W4310588861C187212893 @default.
• W4310588861 hasConceptScore W4310588861C2776194465 @default.
• W4310588861 hasConceptScore W4310588861C2776938444 @default.
• W4310588861 hasConceptScore W4310588861C2779134260 @default.
• W4310588861 hasConceptScore W4310588861C512399662 @default.
• W4310588861 hasConceptScore W4310588861C54355233 @default.
• W4310588861 hasConceptScore W4310588861C71924100 @default.
• W4310588861 hasConceptScore W4310588861C80227256 @default.
• W4310588861 hasConceptScore W4310588861C86803240 @default.
• W4310588861 hasIssue "2" @default.
• W4310588861 hasLocation W43105888611 @default.
• W4310588861 hasLocation W43105888612 @default.
• W4310588861 hasOpenAccess W4310588861 @default.
• W4310588861 hasPrimaryLocation W43105888611 @default.
• W4310588861 hasRelatedWork W1999157046 @default.
• W4310588861 hasRelatedWork W2067811233 @default.
• W4310588861 hasRelatedWork W2081036694 @default.
• W4310588861 hasRelatedWork W2316274385 @default.
• W4310588861 hasRelatedWork W2417146237 @default.
• W4310588861 hasRelatedWork W2418502454 @default.
• W4310588861 hasRelatedWork W3024456095 @default.
• W4310588861 hasRelatedWork W3043669537 @default.
• W4310588861 hasRelatedWork W4255428519 @default.
• W4310588861 hasRelatedWork W4300816948 @default.
• W4310588861 hasVolume "32" @default.
• W4310588861 isParatext "false" @default.
• W4310588861 isRetracted "false" @default.
• W4310588861 workType "article" @default.