Rachel Hall-Clifford

Stigma: a social, cultural and moral process

The concept of stigma has undergone important shifts in definition and characterisation since its initial articulation by Erving Goffman in the 1960s. Here, we contend that the study of stigma has focused too heavily on psychological approaches and has neglected to sufficiently incorporate understandings of stigma and stigmatised individuals as embedded in local moral contexts. What exactly is encompassed by the conceptual umbrella of stigma is far more than a compelling theoretical question, since definitions of stigma directly inform efforts to empirically research and combat stigma. The modern idea of stigma owes a great deal to Goffman, who viewed stigma as a process based on the social construction of identity. Persons who become associated with a stigmatised condition thus pass from a “normal” to a “discredited” or “discreditable” social status.1 In his original discussion of stigma, Goffman included both psychological and social elements, but his ideas have primarily been used in the analysis of the psychological impact of stigma on individuals. This has created an understanding of the psychology of the stigmatised, focusing on the …

Medical Information Systems: A Foundation for Healthcare Technologies in Developing Countries

Among the significant barriers to the provision of health care in developing countries, detailed information concerning disease incidence, health practices and available resources (such as drugs for treatment) are some of the most important. Without detailed information concerning the response to health programs, it is impossible to evaluate the efficacy of a particular program and, hence, effectively allocate funding and resources. Although paper-based systems can provide a partial solution, information transmission is slow and prone to errors. Furthermore, aggregation of data is challenging as patient numbers rise into the hundreds [19], and near impossible with thousands of patients. It is also difficult to impose consistent reporting indicators. The systems described above illustrate the advantages of implementing healthcare technologies within larger collaborations that improve the overall public health infrastructure. One key aspect of the technologies employed in these projects is the use of open standards and open-source development in a collaborative environment. The cases described in this article also demonstrate the need for community data collection, and feasibility of using ICT to enable data collection, and improve information flow in developing countries. Without such approaches, interventions may exacerbate inequalities within countries with weak infrastructure and ingrained social disparities. However, these systems will only work well with carefully designed forms and interfaces, and excellent data management. Furthermore, EMRs can provide a foundational technology that allows for the adoption and evaluation of other health care technologies, such as drug ordering, medical devices, and longitudinal patient follow-ups. Moreover, the projects described above illustrate that the creation of long-term relationships to build infrastructure and solving systemic problems to provide health care can be beneficial to both the patients and the projects involved.

An mHealth monitoring system for traditional birth attendant-led antenatal risk assessment in rural Guatemala.

Abstract Limited funding for medical technology, low levels of education and poor infrastructure for delivering and maintaining technology severely limit medical decision support in low- and middle-income countries. Perinatal and maternal mortality is of particular concern with millions dying every year from potentially treatable conditions. Guatemala has one of the worst maternal mortality ratios, the highest incidence of intra-uterine growth restriction (IUGR), and one of the lowest gross national incomes per capita within Latin America. To address the lack of decision support in rural Guatemala, a smartphone-based system is proposed including peripheral sensors, such as a handheld Doppler for the identification of foetal compromise. Designed for use by illiterate birth attendants, the system uses pictograms, audio guidance, local and cloud processing, SMS alerts and voice calling. The initial prototype was evaluated on 22 women in highland Guatemala. Results were fed back into the refinement of the system, currently undergoing RCT evaluation.

Making surgical missions a joint operation: NGO experiences of visiting surgical teams and the formal health care system in Guatemala

Each year, thousands of Guatemalans receive non-emergent surgical care from short-term medical missions (STMMs) hosted by local non-governmental organizations (NGOs) and staffed by foreign visiting medical teams (VMTs). The purpose of this study was to explore the perspectives of individuals based in NGOs involved in the coordination of surgical missions to better understand how these missions articulate with the larger Guatemalan health care system. During the summers of 2011 and 2013, in-depth interviews were conducted with 25 representatives from 11 different Guatemalan NGOs with experience with surgical missions. Transcripts were analysed for major themes using an inductive qualitative data analysis process. NGOs made use of the formal health care system but were limited by several factors, including cost, issues of trust and current ministry of health policy. Participants viewed the government health care system as a potential resource and expressed a desire for more collaboration. The current practices of STMMs are not conducive to health system strengthening. The role of STMMs must be defined and widely understood by all stakeholders in order to improve patient safety and effectively utilise health resources. Priority should be placed on aligning the work of VMTs with that of the larger health care system.

Improving the Quality of Point of Care Diagnostics with Real-Time Machine Learning in Low Literacy LMIC Settings

The scalability of medical technology in low resource settings requires a higher level of usability and clear decision support compared to conventional devices, since users often have very limited training. In particular, it is important to provide users with real time feedback on data quality during the patient information acquisition in a manner that enables the user to take immediate corrective action. In this work, we present an example of such a system, which provides real time feedback on the source of noise and interference on a low cost Doppler device connected to a smart-phone used by traditional birth attendants (TBAs) in rural Guatemala. A total of 195 fetal recordings made from 146 singleton pregnancies in the second and third trimester were recorded over 8 months by 19 TBAs. The resulting 33.7 hours of data were segmented into 0.75 s epochs and independently labeled by three trained researchers into one of five noise or quality categories that dominated the data. A two-step classifier, composed of a logistic regression and a multiclass support vector machine, was then trained to classify the data on epochs from 0.75 s to 3.75 s. After feature selection the highest micro-averaged test F1 score was 96.8% and macro-average F1 test score was 94.5% for 3.75 s segments using 23 features. A reduced real time model with 17 features produced comparable micro-and macro-averaged test F1 scores of 96.0% and 94.5% respectively. The code is portable back to a low-end smartphone to run on such a device in real time (under 400 ms) in order to provide an audiovisual cue for the TBAs via the smartphone. Future work will evaluate the classifier presented here as part of a decision support system for data quality improvement in an ongoing randomized control trial in Guatemala.

Freedom of choice, expressions of gratitude: Patient experiences of short-term surgical missions in Guatemala

Lack of surgical care has been highlighted as a critical global health problem, and short-term medical missions (STMMs) have become a de facto measure to address this shortfall. Participation in STMMs is an increasingly popular activity for foreign medical professionals to undertake in low- and middle-income countries (LMICs) where their clinical skills may be in short supply. While there is emerging literature on the STMM phenomenon, patient experiences of surgical missions are underrepresented. This research addresses this gap through thirty-seven in-depth interviews with patients or caregivers who received care from a short-term surgical mission within the three years prior to the four-week data collection period in July and August 2013. Interviews were conducted in Antigua, Guatemala and nearby communities, and participants came from 9 different departments of the country. These first-hand accounts of health-seeking through a surgical mission provide important insights into the benefits and challenges of STMMs that patients encounter, including waiting time, ancillary costs, and access to care. Patient agency in care-seeking is considered within the pluralistic, privatized health care context in Guatemala in which foreign participants deliver STMM care.

mHealth intervention to improve the continuum of maternal and perinatal care in rural Guatemala: a pragmatic, randomized controlled feasibility trial

Background/objectiveGuatemala’s indigenous Maya population has one of the highest perinatal and maternal mortality rates in Latin America. In this population most births are delivered at home by traditional birth attendants (TBAs), who have limited support and linkages to public hospitals. The goal of this study was to characterize the detection of maternal and perinatal complications and rates of facility-level referral by TBAs, and to evaluate the impact of a mHealth decision support system on these rates.MethodsA pragmatic one-year feasibility trial of an mHealth decisions support system was conducted in rural Maya communities in collaboration with TBAs. TBAs were individually randomized in an unblinded fashion to either early-access or later-access to the mHealth system. TBAs in the early-access arm used the mHealth system throughout the study. TBAs in the later-access arm provided usual care until crossing over uni-directionally to the mHealth system at the study midpoint. The primary study outcome was the monthly rate of referral to facility-level care, adjusted for birth volume.ResultsForty-four TBAs were randomized, 23 to the early-access arm and 21 to the later-access arm. Outcomes were analyzed for 799 pregnancies (early-access 425, later-access 374). Monthly referral rates to facility-level care were significantly higher among the early-access arm (median 33 referrals per 100 births, IQR 22–58) compared to the later-access arm (median 20 per 100, IQR 0–30) (p = 0.03). At the study midpoint, the later-access arm began using the mHealth platform and its referral rates increased (median 34 referrals per 100 births, IQR 5–50) with no significant difference from the early-access arm (p = 0.58). Rates of complications were similar in both arms, except for hypertensive disorders of pregnancy, which were significantly higher among TBAs in the early-access arm (RR 3.3, 95% CI 1.10–9.86).ConclusionsReferral rates were higher when TBAs had access to the mHealth platform. The introduction of mHealth supportive technologies for TBAs is feasible and can improve detection of complications and timely referral to facility-care within challenging healthcare delivery contexts.Trial registrationClinicaltrials.gov NCT02348840.