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Quality of Patient Information Websites About Congenital Heart Defects: Mixed-Methods Study of Perspectives Among Individuals With Experience of a Prenatal Diagnosis
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.ORCID iD: 0000-0003-4141-8692
Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Languages, Department of Scandinavian Languages.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
Institutionen för Kvinnors och Barns Hälsa, Karolinska Institutet.
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2017 (English)In: Interactive Journal of Medical Research, E-ISSN 1929-073X, Vol. 6, no 2, article id e15Article in journal (Refereed) Published
Abstract [en]

Background: When a heart defect is prenatally diagnosed in the fetus, expectant parents experience a great need for information about various topics. After the diagnosis, the Web is used for supplemental information, and the scarcity of research calls attention to the need to explore patient information websites from the perspectives of the intended consumers.

Objective: The overarching aim of this study was to explore the quality of Swedish patient information websites about congenital heart defects, from the perspectives of individuals with experience of a prenatal diagnosis of congenital heart defect in the fetus.

Methods: This was a mixed-methods study of websites identified through systematic searches in the two most used Web-based search engines. Of the total 80 screened hits, 10 hits led to patient information websites about congenital heart defects. A quality assessment tool inspired by a previous study was used to evaluate each website’s appearance, details, relevance, suitability, information about treatment choices, and overall quality. Answers were given on a 5-point Likert scale, ranging from 1, representing the lowest score, to 5, representing the highest score. Each website was assessed individually by persons with experience of continued (n=4) and terminated (n=5) pregnancy following a prenatal diagnosis. Assessments were analyzed with Kendall’s coefficient of concordance W, Mann-Whitney U test, Friedman’s test, and a Wilcoxon-Nemenyi-McDonald-Thompson test. In addition, each assessor submitted written responses to open-ended questions in the quality assessment tool, and two joint focus group discussions were conducted with each group of assessors. The qualitative data were analyzed with inductive manifest content analysis.

Results: Assessments represented a low score (median=2.0) for treatment choices and moderate scores (median=3.0) for appearance, details, relevance, suitability, and overall quality. No website had a median of the highest achievable score for any of the questions in the quality assessment tool. Medians of the lowest achievable score were found in questions about treatment choices (n=4 websites), details (n=2 websites), suitability (n=1 website), and overall quality (n=1 website). Websites had significantly different scores for appearance (P=.01), details (P<.001), relevance (P<.001), suitability (P<.001), treatment choices (P=.04), and overall quality (P<.001). The content analysis of the qualitative data generated six categories: (1) advertisements, (2) comprehensiveness, (3) design, (4) illustrations and pictures, (5) language, and (6) trustworthiness. Various issues with the included websites were highlighted, including the use of inappropriate advertisements, biased information, poor illustrations, complex language, and poor trustworthiness.

Conclusions: From the perspectives of the intended consumers, patient information websites about congenital heart defects are, to a large extent, inadequate tools for supplemental information following a prenatal diagnosis. Health professionals should initiate discussions with patients about their intentions to use the Web, inform them about the varied quality in the Web-based landscape, and offer recommendations for appropriate Web-based sources.

Place, publisher, year, edition, pages
2017. Vol. 6, no 2, article id e15
Keywords [en]
congenital heart defects, consumer health information, information literacy, Internet, popular works, pregnancy, prenatal diagnosis
National Category
Nursing
Research subject
Caring Sciences
Identifiers
URN: urn:nbn:se:uu:diva-328480DOI: 10.2196/ijmr.7844ISI: 000415945500008PubMedID: 28899846OAI: oai:DiVA.org:uu-328480DiVA, id: diva2:1135690
Available from: 2017-08-23 Created: 2017-08-23 Last updated: 2017-12-19Bibliographically approved
In thesis
1. To Grasp the Unexpected: Information Following a Prenatal Diagnosis of Congenital Heart Defect in the Fetus
Open this publication in new window or tab >>To Grasp the Unexpected: Information Following a Prenatal Diagnosis of Congenital Heart Defect in the Fetus
2017 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The aim was to explore experiences and needs of information following a prenatal diagnosis of congenital heart defect, and to assess the quality of publicly available information websites about congenital heart defects. Study I was a qualitative interview study that explored experiences among 11 parents to prenatally diagnosed children. Respondents tried to grasp the facts today while reflecting on the future, and personal contact with medical specialists was valued. The analysis showed that the Web contained an overwhelming amount of information. Study II was a qualitative interview study that explored experiences among 26 females and males 5-15 weeks after a prenatal diagnosis. Respondents hunted for information in a confusing reality, with a need for information about various topics and methods for information delivery. Although high satisfaction with the specialist information was described, the information was considered overwhelming and complex. Supplemental information was sought via the Web. Insufficient information about induced abortions was described. Study III was a quantitative study that explored content and quality of 67 English websites about congenital heart defects. Few websites included information about prenatal aspects, such as pregnancy termination. The overall quality was poor, especially reliability and information about treatment choices. Study IV was a mixed methods study that explored the quality of 10 Swedish websites about congenital heart defects, from the perspectives of 9 assessors with personal experience of a prenatal diagnosis. Quantitative Likert scale assessments were followed by written open-ended questions and focus group discussions. Quantitative assessments represented unfulfilled quality criterion for treatment choices, and partially fulfilled quality criteria for appearance, details, relevance, suitability and overall quality. Websites had significantly different scores for all investigated quality criteria. Various issues were highlighted in the responses to the open-ended questions and during the discussions, including inappropriate advertisements, biased information, poor illustrations, complex language and poor trustworthiness. In conclusion, expectant parents faced with a prenatal diagnosis of congenital heart defect in the fetus try to grasp the unexpected, an attempt that involves difficulties in relation to information. These are present during the consultation with health professionals and when searching for web-based information. 

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2017. p. 70
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1362
Keywords
Congenital Heart Defects, Consumer Health Information, Internet, Popular Works, Prenatal Diagnosis, Website Quality
National Category
Nursing
Research subject
Caring Sciences; Medical Science
Identifiers
urn:nbn:se:uu:diva-328481 (URN)978-91-513-0050-4 (ISBN)
Public defence
2017-10-12, Auditorium Minus, Museum Gustavianum, Akademigatan 3, Uppsala, 13:15 (Swedish)
Opponent
Supervisors
Available from: 2017-09-21 Created: 2017-08-23 Last updated: 2017-10-17

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Carlsson, TommyMelander, Marttala UllaWadensten, BarbroAxelsson, OveMattsson, Elisabet

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