Andersen et al,18 2008 | Qualitative: in-depth, face-to-face interviews |
To investigate psychosocial aspects of living with long QT syndrome (LQTS) To identify the daily challenges and coping strategies of LQTS patients To describe the experience of LQTS patients with healthcare services
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LQTS patients were concerned that the condition would be inherited by their children and grandchildren. LQTS patients favoured early genetic testing for LGTS, and the provision of information about LQTS in children presented early and gradually.
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Claessens et al,19 2005 | Qualitative: unstructured, in-depth interviews |
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Dekker et al,22 2016 | Publicly available narratives from three online support groups |
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Gantt,21 1992 | Qualitative: unstructured face-to-face interviews; grounded theory |
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Lack of information related to women’s bodies and reproductive issues (‘growing up female’). Over involvement of mothers and healthcare professionals in the affairs of the child’s and woman’s body, resulting in decreased ownership of the body by the woman (‘living against the body’). Poor self-esteem, self-concept and body image (‘growing up heartsick’). A need for various types of counselling for women with congenital heart disease was identified.
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Gantt,20 2002 | Qualitative: descriptive with unstructured interviews |
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Hess et al,26 2010 | Descriptive: a survey of open-ended and Likert-type questions |
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One of the most important issues facing women with peripartum cardiomyopathy is future childbearing. The benefits of participation in the online support group included obtaining and sharing information, exchanging stories, being understood by other women and reassurance.
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Hess et al,27 2012 | Mixed method: analysis of social media postings made by 156 people |
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Ngu et al,25 2014 | Mixed method: retrospective and descriptive |
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The personal experience of women, who successfully lived with their heart condition, influenced their perception of the pregnancy risks. Women with congenital heart disease were concerned about the health risks associated with their congenital heart disease and that of their child.
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Ngu et al,24 2014 | Mixed method: case studies |
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Patel, Berg et al,28 2016 | Mixed method: qualitative face-to-face and telephone interviews; review of medical records |
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Patel, Schaufelberge et al,23 2016 | Qualitative: unstructured interviews |
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