Peripartum Cardiomyopathy Narratives: Lessons for Obstetric Nursing

Sunday, June 15, 2014

Title: Peripartum Cardiomyopathy Narratives: Lessons for Obstetric Nursing

Christine H. Morton, PhD , California Maternal Quality Care Collaborative, Stanford University, Palo Alto, CA
Audrey Lyndon, PhD, RNC, FAAN , Department of Family Health Care Nursing, University of California, San Francisco, San Francisco, CA
Paula Singleton, PhD, MBPsS , Psychology, Leeds Metropolitan University, UK, Leeds, United Kingdom

Discipline: Childbearing (CB), Women’s Health (WH)

Learning Objectives:
  1. Identify incidence of peripartum cardiomyopathy in pregnant population as well as its contribution to pregnancy-related mortality and morbidity
  2. Differentiate typical late pregnancy symptoms of fatigue and shortness of breath with those characteristic of cardiac dysfunction.
  3. Summarize key aspects of women's accounts of symptoms and treatment where obstetric nursing care and advocacy is critical.
Submission Description:
Objective:   This study is a thematic analysis of publicly available, online narratives of womens' experiences with their diagnosis of peripartum cardiomyopathy (PPCM), a rare disorder in which a weakened heart is diagnosed within the final month of pregnancy or within 5 months after delivery. The systematic analysis of how women perceive symptoms, seek medical care and learn of their diagnoses of PPCM will contribute to theoretical understandings of diagnosis as well as inform clinician and patient education components of Maternity Care Improvement Toolkit on Cardiovascular Disease in Pregnancy.  

Design: Qualitative descriptive study using publically available internet narratives posted by women diagnosed with peripartum cardiomyopathy.

Setting: Three online support groups for women diagnosed with peripartum cardiomyopathy

Sample: 94 unique narratives 

Methods:   We conducted an online search was conducted using the terms: "Peripartum cardiomyopathy" and "support."  Three websites were found to contain publicly accessible stories or biographies (narratives) posted by women diagnosed with peripartum cardiomyopathy, yielding narratives from 94 women. Narratives were downloaded and anonymized prior to analysis.  Narratives were analyzed thematically according the methods of Braun and Clarke.  

Results:   The primary themes included symptom experience, dismissal of symptoms by health care providers including obstetric providers, cardiology providers, and emergency department providers, and a degree of fragmentation in care that endangered women in a potentially life-threatening situation. Symptoms such as shortness of breath, fatigue or exhaustion, fluid retention and excessive weight gain overlap with normal “discomforts” of pregnancy, creating space for clinicians to overlook the seriousness of their situation.  This analysis highlights missed opportunities for timely, potentially life-saving, diagnosis of PPCM; the importance of valuing women’s knowledge of their bodies; the importance of positive interactions with maternity clinicians; and the critical role of ongoing social support throughout treatment and recovery.

Conclusion/Implications for nursing practice: Cardiovascular disease, especially peripartum cardiomyopathy, is the leading cause of death among California women, based on the California Pregnancy-Associated Mortality Review, 2002-2004.  As frontline caregivers, nurses with better understanding of women identify symptoms, and seek medical care is critical for making timely and accurate diagnoses.  Taking women seriously and valuing their knowledge as authoritative is critical to prompt accurate diagnosis. Women who receive this diagnosis, similar to other severe morbidities, are likely to experience post-traumatic stress disorder and require additional supportive care and resources as they adjust to postpartum life and recover from life-threatening illness.

Keywords:  peripartum cardiomyopathy; maternal morbidity; pregnancy complications; women's experience

See more of: Research Poster Presentations
<< Previous Abstract | Next Abstract >>
The Association of Women's Health, Obstetric and Neonatal Nurses is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center's Commission on Accreditation.