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- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Continuing pregnancy following a prenatal diagnosis of a cardiac defect: What support do parents need?
- 2015
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Ingår i: Cardiology 2015. 18th Annual Update on Pediatroc and Congenital Cardiovascular Disease. Challenges and Dilemmas. Feb 11-15, 2015. Scottsdale, Arizona, US..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Purpose To explore pregnant women´s/couples’ experiences of counseling and need for support during continued pregnancy following a prenatal diagnosis of congenital heart disease (CHD). Conceptual framework Couples choosing continued pregnancy need support from the time of prenatal diagnosis until delivery. Method Design: Qualitative study, using in-depth interviews 4-8 weeks after prenatal diagnosis. Setting: A tertiary center fetal cardiology unit in Sweden Sample: 12 pregnant women and their partners, consecutively recruited after a prenatal diagnosis of an isolated and significant cardiac defect in their fetus. Data analysis: Qualitative content analysis. Major findings The analysis resulted in four themes: Making the decision: Short waiting time for specialist evaluation together with clear, honest and straightforward information was essential. The importance of knowledge: Parents called for written information together with a high-quality regulated website with information about CHD. The importance of support: Continued and easy access, throughout pregnancy, to health care professionals, including a pediatric specialist nurse, was important. Other parents with similar experiences and social media were also valuable sources of support. Future and daily life: Practical and economical issues during the hospital stay and the initial period after the hospital stay were common concerns. Conclusion The results provided valuable knowledge of how to improve information and support during pregnancy. Short waiting time from first suspicion to definitive diagnosis and continued support throughout pregnancy emphasizing the role of the pediatric cardiology specialist nurse was important. Web-based information was warranted Clinical implications These results provide important information for a future intervention study of a structured follow-up program in collaboration between antenatal- and pediatric cardiac caregivers.
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| 2. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Parental reactions, distress, and sense of coherence after prenatal versus postnatal diagnosis of complex congenital heart disease
- 2019
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Ingår i: Cardiology in the Young. - 1047-9511 .- 1467-1107. ; 29:11, s. 1328-1334
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: A diagnosis of congenital heart disease (CHD) in offspring triggers psychological distress in parents. Results of previous studies have been inconsistent regarding the psychological impact of a prenatal versus a postnatal diagnosis. The aim of this study was to evaluate the influence of the time of diagnosis on levels of parental distress. Methods: Pregnant women and their partners with a fetus diagnosed with complex CHD, parents of children with postnatally diagnosed CHD, and pregnant women and their partners with uncomplicated pregnancies were invited to participate. Data were collected during pregnancy and 2–6 months after delivery using the Hospital Anxiety and Depression Scale, sense of coherence, life satisfaction, and Dyadic Adjustment Scale. Results: During pregnancy, the prenatal group scored lower sense of coherence compared to controls (p=0.044). Postnatally the prenatal group scored lower on sense of coherence compared to the postnatal group and controls (p=0.001; p=0.001). Postnatally, the prenatal and postnatal groups had higher levels of anxiety compared to controls (p=0.025; p=0.0003). Life satisfaction was lower in the prenatal group compared to that in the postnatal group and in controls (p=0.000; p=0.0004). Conclusion: Parents with a prenatal diagnosis of CHD in offspring report a low sense of coherence already during pregnancy which decreased further at follow-up. The same group reported a lower satisfaction with life compared to parents of a child with postnatal diagnosis of CHD and parents of a healthy child. This motivates further efforts to improve counselling and support during pregnancy and for parents after a prenatal diagnosis.
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| 3. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
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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
- 2015
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Ingår i: BMC Pregnancy and Childbirth. - : Springer Science and Business Media LLC. - 1471-2393. ; 15
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Tidskriftsartikel (refereegranskat)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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| 5. |
- Ekman-Joelsson, Britt-Marie, 1956, et al.
(författare)
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Post-transplant lymphoproliferative disease is associated with early sternotomy and left ventricular hypoplasia during infancy: a population-based retrospective review.
- 2017
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Ingår i: Cardiology in the young. - 1467-1107. ; 27:9, s. 1823-1831
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Tidskriftsartikel (refereegranskat)abstract
- Heart transplantation has been an option for children in Sweden since 1989. As our unit faced an increased rate of post-transplant lymphoproliferative disorder, the objective of the study was to identify possible risk factors.This is a retrospective study of all children aged 0-18 years who underwent heart transplantation in Gothenburg from 1989 to 2014.A total of 71 children underwent heart transplantation. The overall incidence of post-transplant lymphoproliferative disorder was 14% (10/71); however, 17% (6/36) of those undergoing transplantation after 2007 developed lymphoma, compared with only 10% (4/35) of transplantation cases before 2007 (p=0.85). The mean age at transplantation was 9 years (0-17). The mean post-transplant follow-up time was 5.5 years (0.5-21.9) in the group that developed post-transplant lymphoproliferative disorder, compared with 10.2 years (0.02-25.2) in those who did not. In our study group, risk factors for post-transplant lymphoproliferative disorder were surgically palliated CHD (p=0.0005), sternotomy during infancy (p⩽0.0001), hypoplastic left ventricle (p=0.0001), number of surgical events (p=0.0022), mismatch concerning Epstein-Barr virus infection - that is, a positive donor-negative recipient (p⩽0.0001) - and immunosuppressive treatment with tacrolimus compared with ciclosporine (p=0.028). Discussion This study has three major findings. First, post-transplant lymphoproliferative disorder only developed in subjects born with CHD. Second, the vast majority (9/10) of the subjects developing the disorder had undergone sternotomy as infants. Third, the number of surgical events correlated with a higher risk for developing post-transplant lymphoproliferative disorder.
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