{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,5,13]],"date-time":"2025-05-13T21:59:07Z","timestamp":1747173547521,"version":"3.40.5"},"reference-count":29,"publisher":"Cambridge University Press (CUP)","issue":"3","license":[{"start":{"date-parts":[[2020,1,10]],"date-time":"2020-01-10T00:00:00Z","timestamp":1578614400000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/www.cambridge.org\/core\/terms"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Cardiol Young"],"published-print":{"date-parts":[[2020,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec id=\"S1047951119003226_as1\" sec-type=\"other\"><jats:title>Background:<\/jats:title><jats:p>The causes of CHD are complex and often unknown, leading parents to ask how and why this has happened. Genetic counselling has been shown to benefit these parents by providing information and support; however, most parents currently do not receive this service. This study aimed to develop a brochure to determine whether an information resource could improve parents\u2019 knowledge about CHD causation and inheritance and increase psychosocial functioning.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951119003226_as2\" sec-type=\"other\"><jats:title>Methods:<\/jats:title><jats:p>In development, the resource was assessed against several readability scales and piloted. Parents of children attending preadmission clinic for surgery were included. Assessments occurred pre- and post-receiving the information resource using a purpose-designed knowledge measure and validated psychological measures.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951119003226_as3\" sec-type=\"other\"><jats:title>Results:<\/jats:title><jats:p>Participant\u2019s (n = 52) knowledge scores increased significantly from the pre-questionnaire (<jats:inline-formula><jats:alternatives><jats:inline-graphic xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" mime-subtype=\"png\" mimetype=\"image\" xlink:href=\"S1047951119003226_inline1.png\"\/><jats:tex-math>\n${\\overline x}\\, = \\,5\/10$\n<\/jats:tex-math><\/jats:alternatives><\/jats:inline-formula>, <jats:sc>sd<\/jats:sc> = 2.086) to post-questionnaire (<jats:inline-formula><jats:alternatives><jats:inline-graphic xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" mime-subtype=\"png\" mimetype=\"image\" xlink:href=\"S1047951119003226_inline2.png\"\/><jats:tex-math>\n$\\overline x\\, = \\,7.88\/10$\n<\/jats:tex-math><\/jats:alternatives><\/jats:inline-formula>, <jats:sc>sd<\/jats:sc> = 2.094, p &lt; 0.001), with all aware that CHD can be caused by genetic factors after reading the brochure. Perceived personal control also increased from pre- (<jats:inline-formula><jats:alternatives><jats:inline-graphic xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" mime-subtype=\"png\" mimetype=\"image\" xlink:href=\"S1047951119003226_inline3.png\"\/><jats:tex-math>\n$\\overline x\\, = \\,11.856\/18$\n<\/jats:tex-math><\/jats:alternatives><\/jats:inline-formula>, <jats:sc>sd<\/jats:sc> = 4.339) to post-brochure (<jats:inline-formula><jats:alternatives><jats:inline-graphic xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" mime-subtype=\"png\" mimetype=\"image\" xlink:href=\"S1047951119003226_inline4.png\"\/><jats:tex-math>\n$\\overline x\\, = \\,14.644\/18$\n<\/jats:tex-math><\/jats:alternatives><\/jats:inline-formula>, <jats:sc>sd<\/jats:sc> = 3.733, p &lt; 0.001), and many reported reduced feelings of guilt. No negative emotional response to the brochure was reported. The information provided was considered relevant (88%), reassuring (86%), and 88% would recommend the brochure to other parents. However, some wanted more emotional support and assistance in what to tell their child.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951119003226_as4\" sec-type=\"other\"><jats:title>Conclusions:<\/jats:title><jats:p>Use of the information resource significantly enhanced parents\u2019 knowledge of CHD causation and increased their psychosocial functioning. It is a valuable resource in the absence of genetic counselling; however, it should not replace formal genetic counselling when required.<\/jats:p><\/jats:sec>","DOI":"10.1017\/s1047951119003226","type":"journal-article","created":{"date-parts":[[2020,1,10]],"date-time":"2020-01-10T05:24:07Z","timestamp":1578633847000},"page":"346-352","source":"Crossref","is-referenced-by-count":4,"title":["\u201cWhy and how did this happen?\u201d: development and evaluation of an information resource for parents of children with CHD"],"prefix":"10.1017","volume":"30","author":[{"given":"Alexis V.","family":"Hunt","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Desiree C. 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