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BMC Pregnancy and Childbirth
Published in: BMC Pregnancy and Childbirth 1/2016

Open Access 01-12-2016 | Research article

Experiences of health care in women with Peripartum Cardiomyopathy in Sweden: a qualitative interview study

Authors: Harshida Patel, Maria Schaufelberger, Cecily Begley, Marie Berg

Published in: BMC Pregnancy and Childbirth | Issue 1/2016

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Abstract

Background

Peripartum cardiomyopathy is often associated with severe heart failure occurring towards the end of pregnancy or in the months following birth with debilitating, exhausting and frightening symptoms requiring person-centered care. The aim of this study was to explore women’s experiences of health care while being diagnosed with peripartum cardiomyopathy.

Method

Qualitative interviews were conducted with 19 women with peripartum cardiomyopathy in Sweden, following consent. Data were analysed using qualitative content analysis. Confirmability was ensured by peer-debriefing, and an audit trail was kept to establish the credibility of the study.

Results

The main theme in the experience of health care was, ‘Exacerbated Suffering’, expressed in three subthemes; ‘not being cared about’, ‘not being cared for’ and ‘not feeling secure.’ The suffering was present in relation to the illness with failing health symptoms, but most of all in relation to not being taken seriously and adequately cared for by healthcare professionals. Women felt they were on an assembly line in midwives’ routine work where knowledge about peripartum cardiomyopathy was lacking and they showed distrust and dissatisfaction with care related to negligence and indifference experienced from healthcare professionals. Feelings of being alone and lost were prominent and related to a sense of insecurity, distress and uneasiness.

Conclusions

This study shows a knowledge gap of peripartum cardiomyopathy in maternity care personnel. This is alarming as the deprecation of symptoms and missed diagnosis of peripartum cardiomyopathy can lead to life-threatening consequences. To prompt timely diagnosis and avoid unnecessary suffering it is important to listen seriously to, and respect, women’s narratives and act on expressions of symptoms of peripartum cardiomyopathy, even those overlapping normal pregnancy symptoms.
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Metadata
Title
Experiences of health care in women with Peripartum Cardiomyopathy in Sweden: a qualitative interview study
Authors
Harshida Patel
Maria Schaufelberger
Cecily Begley
Marie Berg
Publication date
01-12-2016
Publisher
BioMed Central
Published in
BMC Pregnancy and Childbirth / Issue 1/2016
Electronic ISSN: 1471-2393
DOI
https://doi.org/10.1186/s12884-016-1178-3

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