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- Carlsson, Tommy, et al.
(author)
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Content and quality of information websites about congenital heart defects following a prenatal diagnosis
- 2015
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In: Interactive Journal of Medical Research. - : JMIR Publications Inc.. - 1929-073X. ; 4:1, s. 66-76
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Journal article (peer-reviewed)abstract
- BACKGROUND: Pregnant women and their partners use the Internet to search for information following a prenatal diagnosis of congenital heart defect.OBJECTIVE: Our aim was to explore central subjects of content and to assess the accessibility, reliability, usability, and quality of written information on publicly available information websites about congenital heart defects following a prenatal diagnosis.METHODS: Following searches on Bing and Google, we included websites containing patient information in English. Hits ranged from 340,000-67,500,000 and the first 50 hits from each search were screened for inclusion (N=600). Of these hits, 39.3% (236/600) were irrelevant. A total of 67 websites were included, of which 37% (25/67) were affiliated with independent information websites, 25% (17/67) with charity/private organizations, 25% (17/67) with hospitals/clinics, and 13% (8/67) had other affiliations. The majority of the websites (76%, 51/67) could not be attributed to an author. A manifest content analysis was performed to explore central subjects of content. The DISCERN instrument was used to assess the quality of information, and the LIDA tool was used to assess accessibility, usability, and reliability of the included websites.RESULTS: The content on the majority of the websites included care and treatment of children with congenital heart defects (88%, 59/67), causes of congenital heart defects (88%, 59/67), symptoms of congenital heart defects (85%, 57/67), prevalence of congenital heart defects (81%, 54/67), potential complications of congenital heart defects (75%, 50/67), prenatal diagnostics/screening methods (72%, 48/67), and specific congenital heart defects (72%, 48/67), whereas less than 10% included information about termination of pregnancy (6%, 4/67), care during pregnancy (5%, 3/67), and information specifically directed to partners (1%, 1/67). The mean of the total DISCERN score was 27.9 (SD 9.7, range 16-53). According to the instrument, a majority of the websites were categorized as very poor regarding information about effects of no treatment (88%, 59/67), support for shared decision making (85%, 57/67), achievement of its aims (84%, 56/67), explicit aims (82%, 55/67), risks of each treatment (82%, 55/67), how treatment choices affect overall quality of life (76%, 51/67), and areas of uncertainty (76%, 51/67). The mean of the total LIDA score was 92.3 (SD 13.1, range 61-127). According to the tool, a majority of the websites were categorized as good with regard to registration (97%, 65/67) and browser test (75%, 50/67), whereas a majority were categorized as poor with regard to currency (87%, 58/67), content production (84%, 56/67), and engagability (75%, 50/67).CONCLUSIONS: Difficulties in finding relevant information sources using Web search engines and quality deficits on websites are an incentive for health professionals to take an active part in providing adequate and reliable information online about congenital heart defects.
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| 2. |
- Carlsson, Tommy, et al.
(author)
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Information following a Diagnosis of Congenital Heart Defect : Experiences among Parents to Prenatally Diagnosed Children
- 2015
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In: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 10:2
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Journal article (peer-reviewed)abstract
- BACKGROUND: Prenatal screening of pregnant women in Sweden has improved the detection of major congenital heart defects (CHD). The aim was to explore parental experiences and need for information following a prenatal diagnosis of CHD.METHODS: Semi-structured interviews conducted with six fathers and five mothers to seven prenatally diagnosed children. Data were analyzed through content analysis.RESULTS: Three themes and 9 categories emerged. Theme 1, Grasping the facts today while reflecting on the future, containing five categories: Difficulties sorting out information when in emotional chaos; Respectful information regarding termination of pregnancy; Early information is crucial; Understanding the facts regarding the anomaly; Preparing for the future. Theme 2, Personal contact with medical specialists who give honest and trustworthy information is valued, containing two categories: Trust in information received from medical specialists and Truth and honesty is valued. Theme 3, An overwhelming amount of information on the Internet, containing two categories: Difficulties in finding relevant information and Easy to focus on cases with a poor outcome when searching the Internet.CONCLUSION: Early and honest information in line with individual preferences is crucial to support the decisional process regarding whether to continue or terminate the pregnancy. The use of illustrations is recommended, as a complement to oral information, as it increases comprehension and satisfaction with obtained information. Furthermore, the overwhelming amount of information on the Internet calls for compilation of easily accessible and reliable information sources via the Internet.
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