Leeds School of Social Sciences

In 2010, while struggling to finish my PhD, I got an email from Christine Morton, a medical sociologist working at Stanford University. She had some fascinating data about women’s experiences of being diagnosed with a rare and potentially fatal, but totally treatable, heart disease of late pregnancy – peripartum cardiomyopathy, or PPCM.

It was online discussion forum data, and she’d heard that analysing this qualitatively, in depth and detail, not losing the nuance of experience, was my specialist area. Who could resist? I agreed to collaborate on analysis. The paper we published outlines findings from a thematic analysis of mainly American women’s online narratives of PPCM experience, with a focus on what drives women into seeking treatment. The boundary between being dismissed as having ‘normal’ common pregnancy experiences, and taken seriously as having symptoms indicating PPCM, were mediated by how much respect women could get for their symptom descriptions.

The situation for all women in terms of maternal mortality is unacceptable in the USA as Figure 1 below shows. All the other countries have levels of maternal deaths which are falling, and have decreased notably since 1990.

table showing maternal deaths per 100,000 live births in different countries

Figure 1: Figure: maternal deaths per 100,000 live births

Source: Global, regional, and national levels of maternal mortality, 1990–2015: a systematic analysis for the Global Burden of Disease Study 2015," The Lancet.

Only data for 1990, 2000 and 2015 was made available in the journal.

And racial disparities persist. The California Pregnancy-Associated Mortality Review (CA-PAMR, see details below), a comprehensive state-wide examination of maternal deaths from 2002-2007, found that African-American women were three-to-four times more likely to die from a pregnancy-related cause than women of other races and ethnicities. It was beyond the scope of our study to speculate on this, but Dr Morton described how for lower income women in the USA, their main source of healthcare in pregnancy is the emergency room, especially if they feel very unwell.

These medical spaces are not staffed by cardiac specialists nor obstetricians, but by generalists. Throw in how hard it is for pregnant women to be taken seriously, add a healthy dose of the symptom dismissal that so often accompanies healthcare for Black people, and there is a dangerous situation. The California Review has been successful in eliminating some of these systemic problems by implementing standardised protocols, effective planning and better communication for individual clinicians and for entire departments, which have contributed to a reduction in maternal mortality. And they have made a specific recommendation that clinicians caring for African-American women need to have a heightened sense of awareness of risk factors prevalent within this group, including cardiovascular symptoms

But it’s time for the entire USA to follow.

References

Dr Paula Singleton

Senior Lecturer / Leeds School Of Social Sciences

Paula Singleton is a critical psychologist with specialist expertise in qualitative methods, and phenomenology in particular. She has carried out research with a community drugs treatment service and collaborated with Stanford University on a study of a rare pregnancy complication.

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