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.
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.


METHODS



METHODS
Qualitative study, using interviews performed 5-9 weeks after a prenatal diagnosis of congenital heart disease.


METHODS
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.


METHODS
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.
Institute of Health and Care Sciences, The Sahlgrenska Academy, University of Gothenburg, Arvid Wallgrens Backe, Box 457, , 405 30, Gothenburg, Sweden. ewa-lena.bratt@gu.se.|Department of Paediatric Cardiology, The Queen Silvia Childréns hospital, Rondvägen 10, 416 50, Gothenburg, Sweden. ewa-lena.bratt@gu.se.
Ewa-Lena
EL
Bratt
Department of Obstetrics and Gynecology, Sahlgrenska University Hospital, Blå Stråket 6, 413 45, Gothenburg, Sweden. stina.jarvholm@vgregion.se.
Stina
S
Järvholm
Department of Paediatric Cardiology, The Queen Silvia Childréns hospital, Rondvägen 10, 416 50, Gothenburg, Sweden. britt-mari.ekman-joelsson@vgregion.se.
Britt-Marie
BM
Ekman-Joelsson
Department of Obstetrics and Gynecology, Sahlgrenska University Hospital, Blå Stråket 6, 413 45, Gothenburg, Sweden. lars-ake.mattsson@vgregion.se.
Lars-Åke
LÅ
Mattson
Department of Paediatric Cardiology, The Queen Silvia Childréns hospital, Rondvägen 10, 416 50, Gothenburg, Sweden. mats.mellander@vgregion.se.
Mats
M
Mellander
D000328:Adult; D003376:Counseling; D005260:Female; D006330:Heart Defects, Congenital; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D011247:Pregnancy; D011296:Prenatal Diagnosis; D036301:Qualitative Research; D012944:Social Support; D013315:Stress, Psychological / Q000523:psychology*; D013548:Sweden; D055815:Young Adult