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BMC Pregnancy and Childbirth
Published in: BMC Pregnancy and Childbirth 1/2015

Open Access 01-12-2015 | Research article

Parent’s experiences of counselling and their need for support following a prenatal diagnosis of congenital heart disease - a qualitative study in a Swedish context

Authors: Ewa-Lena Bratt, Stina Järvholm, Britt-Marie Ekman-Joelsson, Lars-Åke Mattson, Mats Mellander

Published in: BMC Pregnancy and Childbirth | Issue 1/2015

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Abstract

Background

Prenatal screening for foetal cardiac abnormalities has been increasingly practiced in Sweden during the last 25 years. A prenatal diagnosis may have medical benefits but may also cause sustained parental psychological distress. The aim of this study was to explore pregnant women’s, and their partner’s, experiences of counselling and need for support during continued pregnancy following a prenatal diagnosis of a cardiac defect. A second aim was to use this information to propose a structured follow-up programme for continued support after the first counselling.

Method

Design: Qualitative study, using interviews performed 5–9 weeks after a prenatal diagnosis of congenital heart disease.
Setting: A tertiary foetal cardiology unit in Sweden
Sample: Six pregnant women and their 6 partners, consecutively recruited after a prenatal diagnosis of an isolated and significant cardiac defect.
Data analysis: Qualitative content analysis.

Results

The analysis resulted in three themes. 1/ Counselling and making a decision - the importance of knowledge and understanding: Short waiting time for specialist evaluation together with clear and straightforward information was essential. Parents called for written information together with a high-quality website with relevant information about congenital heart disease. 2/ Continued support during pregnancy: Continued and easy access to health care professionals, including a paediatric specialist nurse, throughout pregnancy, was important. Contact with couples with similar experiences and social media were also considered valuable sources of support. 3/ Next step – the near future: Practical and economical issues during the postnatal hospital stay and the initial period following the hospital stay were common concerns.

Conclusions

The following aspects should be considered in a structured follow up program during pregnancy after a prenatal diagnosis of CHD; written information, access to a safe web-site with information of high quality in their native language, support from parents with similar experiences and continued contact with a specialist liaison nurse with experience of paediatric cardiology.
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Metadata
Title
Parent’s experiences of counselling and their need for support following a prenatal diagnosis of congenital heart disease - a qualitative study in a Swedish context
Authors
Ewa-Lena Bratt
Stina Järvholm
Britt-Marie Ekman-Joelsson
Lars-Åke Mattson
Mats Mellander
Publication date
01-12-2015
Publisher
BioMed Central
Published in
BMC Pregnancy and Childbirth / Issue 1/2015
Electronic ISSN: 1471-2393
DOI
https://doi.org/10.1186/s12884-015-0610-4

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