Peripartum Cardiomyopathy Narratives: Lessons for Obstetric Nurses

Objective: To contribute to the theoretical understanding of diagnosis peripartum cardiomyopathy (PPCM) and inform the clinician and patient education components of the Maternity Care Improvement Toolkit on Cardiovascular Disease in Pregnancy. Design: Qualitative descriptive study using publically available Internet narratives posted by women diagnosed with PPCM. Setting: Three online support groups for women diagnosed with PPCM. Sample: Unique narratives (N = 94). Methods: We conducted an online search using the terms PPCM and support. We found three websites that contained publicly accessible stories or biographies (narratives) posted by women diagnosed with PPCM, yielding narratives from 94 women. Narratives were downloaded and deidentified 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 potentially life-threatening situations. 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 lifesaving, 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 PPCM, is the leading cause of death among California women, based on the California Pregnancy-Associated Mortality Review, 2002 to 2004. 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 posttraumatic stress disorder and require additional supportive care and resources as they adjust to postpartum life and recover from life-threatening illness.