Background: Prenatal screening for foetal cardiac abnormalities has been increasingly practiced in Sweden during\nthe last 25 years. A prenatal diagnosis may have medical benefits but may also cause sustained parental\npsychological distress. The aim of this study was to explore pregnant womenââ?¬â?¢s, and their partnerââ?¬â?¢s, experiences of\ncounselling and need for support during continued pregnancy following a prenatal diagnosis of a cardiac defect. A\nsecond aim was to use this information to propose a structured follow-up programme for continued support after\nthe first counselling.\nMethod: Design: Qualitative study, using interviews performed 5ââ?¬â??9 weeks after a prenatal diagnosis of congenital\nheart disease.\nSetting: A tertiary foetal cardiology unit in Sweden\nSample: Six pregnant women and their 6 partners, consecutively recruited after a prenatal diagnosis of an isolated\nand significant cardiac defect.\nData analysis: Qualitative content analysis.\nResults: The analysis resulted in three themes. 1/ Counselling and making a decision - the importance of\nknowledge and understanding: Short waiting time for specialist evaluation together with clear and straightforward\ninformation was essential. Parents called for written information together with a high-quality website with relevant\ninformation about congenital heart disease. 2/ Continued support during pregnancy: Continued and easy access to\nhealth care professionals, including a paediatric specialist nurse, throughout pregnancy, was important. Contact\nwith couples with similar experiences and social media were also considered valuable sources of support. 3/ Next\nstep ââ?¬â?? the near future: Practical and economical issues during the postnatal hospital stay and the initial period\nfollowing the hospital stay were common concerns.\nConclusions: The following aspects should be considered in a structured follow up program during pregnancy\nafter a prenatal diagnosis of CHD; written information, access to a safe web-site with information of high quality in\ntheir native language, support from parents with similar experiences and continued contact with a specialist liaison\nnurse with experience of paediatric cardiology.
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