Document Detail

Ro52 autoantibody-positive women's experience of being pregnant and giving birth to a child with congenital heart block.
MedLine Citation:
PMID:  22154225     Owner:  NLM     Status:  Publisher    
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.
Joanna Tingström; Elisabet Welin Henriksson; Sven-Erik Sonesson; Marie Wahren-Herlenius
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Publication Detail:
Type:  JOURNAL ARTICLE     Date:  2011-12-9
Journal Detail:
Title:  Midwifery     Volume:  -     ISSN:  1532-3099     ISO Abbreviation:  -     Publication Date:  2011 Dec 
Date Detail:
Created Date:  2011-12-13     Completed Date:  -     Revised Date:  -    
Medline Journal Info:
Nlm Unique ID:  8510930     Medline TA:  Midwifery     Country:  -    
Other Details:
Languages:  ENG     Pagination:  -     Citation Subset:  -    
Copyright Information:
Copyright © 2011 Elsevier Ltd. All rights reserved.
Department of Medicine, Karolinska Institutet, S-171 76 Stockholm, Sweden.
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