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.
Widespread reports of “disrespect and abuse” in maternity wards in low- and middle-income countries have triggered the development of rights-based respectful maternity care (RMC) standards and initiatives. To explore how international standards translate into local realities, we conducted a team ethnography, involving observations in labor wards in government facilities in central Malawi, and interviews and focus groups with midwives, women, and guardians. We identified a dual disconnect between, first, universal RMC principles and local notions of good care and, second, between midwives and women and guardians. The latter disconnect pertains to fraught relationships, reproduced by and manifested in mechanistic care, mutual responsibilization for trouble, and misunderstandings and distrust. RMC initiatives should be tailored to local contexts and midwife-client relationships. In a hierarchical, resource-strapped context like Malawi, promoting mutual love, understanding, and collaboration may be a more productive way to stimulate “respectful” care than the current emphasis on formal rights and respect.
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.
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