Mie de Wolff1, Anne Schjødt Ersbøll2, Hanne Hegaard3, Marianne Johansen4, Finn Gustafsson5, Peter Damm6, Julie Midtgaard7. 1. Research Unit Women's and Children's Health, The Juliane Marie Centre, Copenhagen University Hospital Rigshospitalet, Section 7821, Blegdamsvej 9, 2100 Copenhagen, Denmark; Department of Obstetrics, Copenhagen University Hospital Rigshospitalet, Blegdamevej 9, 2100 Copenhagen, Denmark; Department of Obstetrics, Hvidovre Hospital, Kettegaards Allé 30, 2650 Hvidovre, Denmark. Electronic address: mie.gaarskjaer.de.wolff.01@regionh.dk. 2. Research Unit Women's and Children's Health, The Juliane Marie Centre, Copenhagen University Hospital Rigshospitalet, Section 7821, Blegdamsvej 9, 2100 Copenhagen, Denmark; Department of Obstetrics, Copenhagen University Hospital Rigshospitalet, Blegdamevej 9, 2100 Copenhagen, Denmark; Center for Pregnancy and Heart Disease, Copenhagen University Hospital Rigshospitalet, Blegdamsvej 9, Denmark. 3. Research Unit Women's and Children's Health, The Juliane Marie Centre, Copenhagen University Hospital Rigshospitalet, Section 7821, Blegdamsvej 9, 2100 Copenhagen, Denmark; Department of Obstetrics, Copenhagen University Hospital Rigshospitalet, Blegdamevej 9, 2100 Copenhagen, Denmark; Department of Clinical Medicine, University of Copenhagen, Blegdamsvej 3, 2100 Copenhagen, Denmark. 4. Department of Obstetrics, Copenhagen University Hospital Rigshospitalet, Blegdamevej 9, 2100 Copenhagen, Denmark; Center for Pregnancy and Heart Disease, Copenhagen University Hospital Rigshospitalet, Blegdamsvej 9, Denmark. 5. Center for Pregnancy and Heart Disease, Copenhagen University Hospital Rigshospitalet, Blegdamsvej 9, Denmark. 6. Department of Obstetrics, Copenhagen University Hospital Rigshospitalet, Blegdamevej 9, 2100 Copenhagen, Denmark; Center for Pregnancy and Heart Disease, Copenhagen University Hospital Rigshospitalet, Blegdamsvej 9, Denmark; Department of Clinical Medicine, University of Copenhagen, Blegdamsvej 3, 2100 Copenhagen, Denmark. 7. The University Hospitals Centre for Health Research (UCSF), Copenhagen University Hospital Rigshospitalet, Section 9701, Ryesgade 27, 2100 Copenhagen, Denmark; Department of Public Health, University of Copenhagen, Øster Farimagsgade 5, 1014 København K, Denmark.
Abstract
BACKGROUND: Peripartum cardiomyopathy (PPCM) is a rare and potentially life-threatening condition of heart failure affecting women with no previous heart disease in the last months of pregnancy and up to six months after childbirth. OBJECTIVE: To explore women's experiences of the process of regaining psychological balance and wellbeing (i.e. psychological adaptation) after having experienced severe peripartum morbidity. DESIGN: A qualitative exploratory research design was applied to guide the study. Data was collected through in-depth, semi-structured, face-toface telephone and e-mail interviews. Thematic analysis was applied in the data analysis. SETTING: The study was a sub-study of a larger nationwide research study investigating the incidence and clinical outcome of peripartum cardiomyopathy in Denmark during a ten-year period of 2005-2014. PARTICIPANTS: Through a criterion-based sampling strategy, 14 Danish women with peripartum cardiomyopathy were recruited for participation in the study. In relation to severity of disease, demographics and pregnancy related characteristic, the sample showed a wide range of diversity. FINDINGS: The overarching theme of the thematic analysis was identified to be Recovering to a new normal after peripartum cardiomyopathy. The overarching theme was comprised by five main themes: Losing trust, Silence after chaos, Disrupted early mothering, Choices made for me and not by me, and Ability to mobilize inner resources. CONCLUSIONS: Findings from this study suggest that women are vulnerable in the time after PPCM diagnosis and struggle to find psychological balance in their life. The need for professional psychological support was often unmet and the physical symptoms were foregrounded in the recovery period. After PPCM, follow-up on psychological wellbeing and morbidity should be offered to women routinely.
BACKGROUND:Peripartum cardiomyopathy (PPCM) is a rare and potentially life-threatening condition of heart failure affecting women with no previous heart disease in the last months of pregnancy and up to six months after childbirth. OBJECTIVE: To explore women's experiences of the process of regaining psychological balance and wellbeing (i.e. psychological adaptation) after having experienced severe peripartum morbidity. DESIGN: A qualitative exploratory research design was applied to guide the study. Data was collected through in-depth, semi-structured, face-toface telephone and e-mail interviews. Thematic analysis was applied in the data analysis. SETTING: The study was a sub-study of a larger nationwide research study investigating the incidence and clinical outcome of peripartum cardiomyopathy in Denmark during a ten-year period of 2005-2014. PARTICIPANTS: Through a criterion-based sampling strategy, 14 Danish women with peripartum cardiomyopathy were recruited for participation in the study. In relation to severity of disease, demographics and pregnancy related characteristic, the sample showed a wide range of diversity. FINDINGS: The overarching theme of the thematic analysis was identified to be Recovering to a new normal after peripartum cardiomyopathy. The overarching theme was comprised by five main themes: Losing trust, Silence after chaos, Disrupted early mothering, Choices made for me and not by me, and Ability to mobilize inner resources. CONCLUSIONS: Findings from this study suggest that women are vulnerable in the time after PPCM diagnosis and struggle to find psychological balance in their life. The need for professional psychological support was often unmet and the physical symptoms were foregrounded in the recovery period. After PPCM, follow-up on psychological wellbeing and morbidity should be offered to women routinely.