Beyond severe acute maternal morbidity: a mixed-methods study on the long-term consequences of (severe pre-)eclampsia in rural Tanzania.

OBJECTIVES: To explore the long-term (perceived) consequences of (severe pre-)eclampsia in rural Tanzania. METHODS: Women were traced for this mixed-methods study 6-7 years after the diagnosis of (severe pre-)eclampsia. Demographic and obstetric characteristics were noted, and blood pressure was recorded. Questionnaires were used to assess physical and mental health. The qualitative part consisted of semi-structured interviews (SSI). A reference group consisted of women without hypertensive disorders of pregnancy. RESULTS: Of 74 patients, 25 (34%) were available for follow-up, and 24 were included. Five (20%) had suffered from (pre-)eclampsia twice. Hypertension was more common after (pre-)eclampsia than in the reference group (29% vs. 13%). Thirteen women (56%) had feelings of anxiety and depression, compared to 30% in the reference group. In SSIs, experiences during the index pregnancy were explored, as well as body functions, reproductive life course and limitations in daily functioning, which were shown to be long-lasting. CONCLUSIONS: Women who suffered from (severe pre-)eclampsia may experience long-term sequelae, including hypertension, depression and anxiety. Women lack information about their condition, and some are worried to conceive again. To address their specific needs, a strategy along the continuum of care is needed for women following a complicated pregnancy, starting with a late postnatal care visit 6 weeks after giving birth.

OBJECTIFS: Explorer les conséquences à long terme (perçues) de la (sévère pré-) éclampsie en zone rurale, en Tanzanie. MÉTHODES: Les femmes ont été suivies pour cette étude à méthodes mixtes durant 6 à 7 ans après le diagnostic de (sévère pré-) éclampsie. Les caractéristiques démographiques et obstétriques ont été notées et la pression artérielle a été enregistrée. Des questionnaires ont été utilisés pour évaluer la santé physique et mentale. La partie qualitative consistait en des entretiens semi-structurés (ESS). Un groupe de référence était composé de femmes sans troubles hypertensifs de la grossesse. RÉSULTATS: Sur 74 patientes, 25 (34%) étaient disponibles pour le suivi et 24 ont été incluses. Cinq (20%) avaient souffert de (pré-) éclampsie à deux reprises. L'hypertension était plus fréquente après la (pré-) éclampsie que dans le groupe de référence (29% vs 13%). Treize femmes (56%) avaient des sensations d'anxiété et de dépression, contre 30% dans le groupe de référence. Dans les ESS, les expériences au cours de la grossesse indice ont été explorées, ainsi que les fonctions corporelles, le cours de la vie reproductive et les limitations du fonctionnement quotidien, qui se sont révélées durables. CONCLUSIONS: Les femmes qui ont souffert de (sévère pré-) éclampsie pourraient éprouver des séquelles à long terme, y compris l'hypertension, la dépression et l'anxiété. Les femmes manquent d'informations sur leur état et certaines ont peur de concevoir à nouveau. Pour répondre à leurs besoins spécifiques, une stratégie tout au long du continuum des soins est nécessaire pour les femmes à la suite d'une grossesse compliquée, en commençant par une visite de soins postnatals tardive six semaines après l'accouchement.

Between orchestrated and organic: Accountability for loss and the moral landscape of childbearing in Malawi.

This paper explores loss in childbearing in Malawi (miscarriages, perinatal deaths and maternal mortality) as a lens to understand accountability and health system functioning. In low-income countries, maternal and perinatal mortality reflects poor health system functioning, to be improved in part through accountability. Understanding how accountability plays out on the ground requires examination of the existing, 'organic' accountability relationships and mechanisms. Thematic and discourse analysis of interviews and observations illuminates vocabularies of responsibility and practices of accountability concerning loss. Women are especially held accountable for loss, by a range of social actors. They use existing 'organic' accountability relationships and mechanisms to manage their own interests, but arguably also to care for pregnant women, even though negative birth experiences may ensue. Instances of disrespectful care appear a by-product of the convergence of organic and orchestrated, policy-driven accountability for numeric outcomes (deaths averted) rather than process (quality of care). Moreover, in the absence of essential physical resources, providers and relatives mobilize the social resources at their disposal to keep women and babies alive. Improving quality of care requires acknowledgment that providers' actions are both systemic and situational, and embedded in local moral landscapes and uneven webs of accountability.

Doing patient-centredness versus achieving public health targets: A critical review of interactional dilemmas in ART adherence support.

Anti-retroviral Therapy (ART) transformed HIV into a chronic disease but its individual and public health benefits depend on high levels of adherence. The large and rising number of people on ART, now also used as prevention, puts considerable strain on health systems and providers in low and middle as well as high-income countries, which are our focus here. Delivering effective adherence support is thus crucial but challenging, especially given the promotion of patient-centredness and shared decision making in HIV care. To illuminate the complexities of ART adherence support delivered in and through clinical encounters, we conducted a multi-disciplinary interpretative literature review. We reviewed and synthesized 82 papers published post 1997 (when ART was introduced) belonging to three bodies of literature: public health and psychological studies of ART communication; anthropological and sociological studies of ART; and conversation analytic studies of patient-centredness and shared decision-making. We propose three inter-related tensions which make patient-centredness particularly complex in this infectious disease context: achieving trust versus probing about adherence; patient-centredness versus reaching public health targets; and empowerment versus responsibilisation as 'therapeutic citizens'. However, there is a dearth of evidence concerning how precisely ART providers implement patient-centredness, shared-decision making in practice, and enact trust and therapeutic citizenship. We show how conversation analysis could lead to new, actionable insights in this respect.

Automatically you become a polygamist': 'culture' and 'norms' as resources for normalization and managing accountability in talk about responses to infertility.

In the developing world, infertility is a serious problem. It leads to both psychological and social hardship, in part because childless marriages often result in divorce, men taking another wife or extramarital relationships. Such responses have been attributed to cultural norms that mandate procreation. However, there are theoretical, methodological and moral issues with treating cultural norms as behavioural determinants. They have been insufficiently acknowledged in health research. Therefore, I demonstrate an alternative discursive approach, which examines how people actively mobilize ;culture' or ;norms' in interactions, and the interpersonal functions thereby fulfilled (e.g. blaming or justifying). Analysis is presented of interviews on (responses to) infertility in Malawi. I show how respondents construct polygamy and extramarital affairs as culturally and normatively required, ;automatic' and normal solutions for fertility problems and play down people's accountability for these practices. These accounts and constructions appear to facilitate engagement in affairs and polygamy when people face fertility problems, which seems problematic from a health and gender perspective. Thus, detailed analysis of how people use ;culture' and ;norms' in situ is important because it provides insights into its potentially undesirable consequences. Moreover, such analysis provides a starting point for culturally and gender sensitive interventions, since it highlights people's agency, and creates a space to re-construct and change practices.