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Symptoms and care experiences in women with Peripartum cardiomyopathy Qualitative research

Funding: Heart-Lung foundation, VGR and Wilhelm Martina Lundgren scholarship
Period: 16/1/2012 – 4/1/2013

In most women, moving through pregnancy, labor, birth and the postpartum period is a process associated with health and happiness, but some can be affected with illness. Peripartum cardiomyopathy (PPCM) is one such condition, associated with severe heart failure (HF), that can be life threatening. PPCM is a form of cardiac disease often associated with cardiac failure, occurring in late pregnancy or after childbirth (Sliwa et al., 2010). The incidence and prognosis of PPCM varies globally, in Africa 1:100 to 1:1000 and Haiti 1:299 (Elkayam, 2011, Sliwa 2013, Pillarisetti 2014), and in Sweden 1:5719 (Barasa 2017). The incidence of PPCM is rising lately possibly because of better diagnostic tools, knowledge and socio-economic changes. The main/cardinal symptoms of PPCM are those of HF and include fatigue, shortness of breath, and fluid retention and thus diagnosis is often missed or delayed as initial symptoms are similar to those of hemodynamic changes in normal pregnancy or early postpartum period (Groesdonketal.,2009; Sliwa et al., 2010; Germain, 2011; Givertz, 2013). The causes, risk factors, etiology, treatment and prognosis of PPCM have been described in the literature. There are, however, a lot more questions that remain unanswered and women's experiences of symptoms of PPCM are rarely explored. As understanding specific conditions from the ‘sufferers’ perspective is a foundational starting point for caring (Watson, 2011), it is important to understand the subjective experience and meaning of PPCM from the affected person's perspective. Women's experiences of PPCM remain poorly studied. Hence, the lack of research in this area points to the need for knowledge acquirement from those who are affected, to assist with differential and early diagnosis of PPCM and to offer the person-centered care.

The aim of the study was to explore and describe women’s experiences of symptoms and received care in PPCM and identifies the areas for improvement.

Nineteen mothers with PPCM diagnosis were recruited and interviewed from Western Sweden. All interview transcripts were analyzed using qualitative inductive content analysis to identify key themes.

The main theme, meaning of onset and occurrence of symptoms is captured in the metaphor: being caught in a spider web, comprising sub- themes, invasion of the body by experienced symptoms and feelings of helplessness. Symptoms related to PPCM started for 17 women during pregnancy and in two postpartum and time from symptoms to diagnosis varied between three and 190 days (median40). The physical symptoms were: shortness of breath, excessive fatigue and swelling, bloatedness, nausea, palpitation, coughing, chest tightness, bodily pain, headache, fever, tremor, dizziness, syncope, restless and tingly body and reduced urine output. Emotional symptoms were: fear, anxiety, feelings of panic, and thoughts of impending death.
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 PPCM 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. Although women expressed miscellaneous experiences of care, majority of them described being not cared in adequate manner. 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.
Symptoms of PPCM were debilitating, exhausting and frightening for the women interviewed in this study. This is alarming as the deprecation of symptoms and missed diagnosis of PPCM 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 PPCM, even those overlapping normal pregnancy symptoms. The analyses shows the importance of respecting women’s narratives and positive interactions with midwives and obstetricians as well as the knowledge gap is highlighted in the maternity care personnel.

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Utskriftsdatum: 2019-08-19