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Ro52 autoantibody-positive women's experience of being pregnant and giving birth to a child with congenital heart block
Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
Division of Nursing, Department of Neurobiology, Care Sciences and Society, Stockholm, Sweden.ORCID iD: 0000-0002-4258-5348
Department of Women and Child Health, Karolinska Institutet, Stockholm, Sweden.
Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
2013 (English)In: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 29, no 1, p. 18-23Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: congenital heart block may develop in the fetus of women with Ro/SSA autoantibodies. The aim of this study was to investigate how women expecting a child with congenital heart block (CHB) experienced their pregnancy and post-partum period.

DESIGN, SETTING AND PARTICIPANTS: women giving birth to a child with CHB in Sweden during 2000-2009 were identified in a population-based manner and individually interviewed post-pregnancy using a semi-structured interview guide. The interviews (n=21) were audiotaped, transcribed verbatim and analysed by qualitative content analysis.

FINDINGS: three categories emerged from the responses: learning, suspense and facing. Learning contained both learning about the child's heart block, but frequently also about autoantibody-positivity and a potential rheumatic diagnosis in the mother (16/21). The medical procedures and information differed considerably depending on the area of residence and who was encountered in the health-care system. In many cases, ignorance about this rare condition caused a delay in treatment and surveillance. Suspense described the women's struggle to cope with the feeling of guilt and that the child had a serious heart condition and might not survive the pregnancy. Facing included the post-partum period, leaving the hospital and adjusting to everyday life. The women had tended to put their pregnancies 'on hold', and some described that they needed prolonged time to bond with their newborn child.

CONCLUSION: increased awareness and knowledge of CHB are needed to provide adequate care. Offering psychological support by a health-care professional to facilitate early bonding with the child should be considered.

IMPLICATIONS FOR PRACTICE: there is a need for structured programs for surveillance of the pregnancies. Such programme should implement guidelines for the involved personnel in the chain of care and make relevant information accessible for the women and families.

Place, publisher, year, edition, pages
Elsevier, 2013. Vol. 29, no 1, p. 18-23
Keywords [en]
Congenital heart block, Pregnancy, Pacemaker, Semi-structured interview
National Category
Medical and Health Sciences Nursing
Identifiers
URN: urn:nbn:se:oru:diva-70544DOI: 10.1016/j.midw.2011.10.008ISI: 000314066800006PubMedID: 22154225Scopus ID: 2-s2.0-84872490298OAI: oai:DiVA.org:oru-70544DiVA, id: diva2:1298548
Funder
Swedish Research CouncilSwedish Foundation for Strategic Research Stockholm County CouncilGöran Gustafsson Foundation for Research in Natural Sciences and MedicineRagnar Söderbergs stiftelseSwedish Heart Lung FoundationSwedish Rheumatism Association
Note

Funding Agency:

King Gustaf Vth 80-year Foundation

Available from: 2019-03-24 Created: 2019-03-24 Last updated: 2019-04-08Bibliographically approved

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Henriksson, Elisabet Welin

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