A qualitative study of women and partners from Lebanon and Quebec regarding an expanded scope of noninvasive prenatal testing.

BACKGROUND: In the near future, developments in non-invasive prenatal testing (NIPT) may offer couples the opportunity to expand the range of genetic conditions tested with this technology. This possibility raises a host of ethical and social concerns, such as the type of information (medical vs. non-medical information) that couples might be exposed to and how this might complicate their informed decision-making. Currently, only limited research, mainly carried out in western countries, was conducted on women's and partners' views regarding the potential expansion of NIPT. METHODS: This study used semi-structured interviews with pregnant women and their partners to explore their views on future potential NIPT applications such as non-medical sex selection and non-medical traits, paternity testing, and NIPT use for fetal whole genome sequencing (FWGS). It was conducted in Lebanon and Quebec, as case studies to explore the impact of cultural differences on these views. RESULTS: We found no differences and many similarities when comparing the perceptions of participants in both contexts. While couples in both settings disapproved of the use of NIPT for non-medical sex selection and non-medical traits such as physical characteristics, they were near-unanimous about their support for its use for paternity testing in specific cases, such as legal doubts or conflicts related to the identity of the father. Participants were more ambivalent about NIPT for Fetal Whole Genome Sequencing. They supported this use to detect conditions that would express at birth or early childhood, while objecting to testing for adult-onset conditions. CONCLUSIONS: These results can further inform the debate on the future uses of NIPT and future policy related its implementation.

Implementation challenges for an ethical introduction of noninvasive prenatal testing: a qualitative study of healthcare professionals' views from Lebanon and Quebec.

BACKGROUND: The clinical introduction of non-invasive prenatal testing for fetal aneuploidies is currently transforming the landscape of prenatal screening in many countries. Since it is noninvasive, safe and allows the early detection of abnormalities, NIPT expanded rapidly and the test is currently commercially available in most of the world. As NIPT is being introduced globally, its clinical implementation should consider various challenges, including the role of the surrounding social and cultural contexts. We conducted a qualitative study with healthcare professionals in Lebanon and Quebec as case studies, to highlight the relevance of cultural contexts and to explore the concerns that should be taken into account for an ethical implementation of NIPT. METHODS: We conducted semi-structured interviews with 20 healthcare professionals (HCPs), 10 from each country, practicing in the field of prenatal screening and follow up diagnostic testing, including obstetricians and gynecologists, nurses, medical geneticists and, genetic counselors. We aimed to 1) explore HCPs' perceptions and views regarding issues raised by NIPT and 2) to shed light on ways in which the introduction of the same technology (NIPT) in two different contexts (Lebanon and Quebec) raises common and different challenges that are influenced by the cultural norms and legal policies in place. RESULTS: We identified challenges to the ethical implementation of NIPT. Some are common to both contexts, including financial/economic, social, and organizational/ educational challenges. Others are specific to each context. For example, challenges for Lebanon include abortion policy and financial profit, and in Quebec challenges include lobbying by Disability rights associations and geographical access to NIPT. CONCLUSIONS: Our findings highlight the need to consider specific issues related to various cultural contexts when developing frameworks that can guide an ethically sound implementation of NIPT. Further, they show that healthcare professional education and training remain paramount in order to provide NIPT counseling in a way that supports pregnant women and couples' choice.

Promoting access equity and improving health care for women, children and people living with HIV/AIDS in Burkina Faso through mHealth.

Background: In Burkina Faso, access to health services for women, children and people living with HIV/AIDS (PLWHAs) remains limited. Mobile telephony offers an alternative solution for reaching these individuals. The objective of the study was to improve equity of access to health care and information among women and PLWHAs by reinforcing community participation. Methods: Using a quasi-experimental approach, a mobile telephone system was set up at five health centres to provide an automated reminder service for health care consultation appointments. Performance evaluations based on key performance indicators were subsequently conducted. Results: A total of 1501 pregnant women and 301 PLWHAs were registered and received appointment reminders. A 7.34% increase in prenatal coverage, an 84% decrease in loss to follow-up for HIV (P < 0.001) and a 31% increase in assisted deliveries in 2016 (P < 0.0001) were observed in intervention areas. However, there was no statistically significant difference between intervention site and control site (P= 0.451 > 0.05) at post-intervention. Efforts to involve community members in decision-making processes contributed to improved health system governance. Conclusion: Mhealth may improve maternal and child health and the health of PLWHAs. However, establishment of a mHealth system requires taking into account community dynamics and potential technological challenges. Keywords: access to care, Burkina Faso, equity, health system governance, mobile telephony, Nouna.

Cross-cultural perspectives on decision making regarding noninvasive prenatal testing: A comparative study of Lebanon and Quebec.

Noninvasive prenatal testing (NIPT), based on the detection of cell-free fetal DNA in maternal blood, has transformed the landscape of prenatal care by offering clinical benefits (noninvasive, high specificity and sensitivity, early detection of abnormalities) compared to existing prenatal screening tests. NIPT has expanded rapidly and is currently commercially available in most of the world. As NIPT spreads globally, culturally sensitive and ethically sound implementation will require policies that take into consideration the social and cultural context of prenatal testing decisions. In a Western context, the main ethical argument for providing access and public funding of prenatal tests is the promotion of reproductive autonomy (also referred to as "procreative liberty" and "reproductive freedom"), by enabling pregnant women and couples to access information about the fetus in order to choose a certain course of action for pregnancy management (continuation of pregnancy and preparation for birth or termination). So how is the framework of reproductive autonomy operationalized in non-Western cultural contexts? We used Quebec, Canada, and Beirut, Lebanon, for case studies to explore what ethical considerations related to reproductive autonomy should guide the implementation of the test in various cultural contexts. To answer this question, we conducted a qualitative study to (1) explore the perceptions, values, and preferences of pregnant women and their partners about NIPT and (2) examine how these values and perceptions influence reproductive autonomy and decision making in relation to NIPT in these two different cultural settings, Lebanon and Quebec. Our findings may guide health care professionals in providing counseling and in helping women and their partners make better informed prenatal testing decisions. Further, at a policy level, such understanding might inform the development of local guidelines and policies that are appropriate to each context.

Situating mobile health: a qualitative study of mHealth expectations in the rural health district of Nouna, Burkina Faso.

BACKGROUND: The implementation of mobile health (mHealth) projects in low- and middle-income countries raises high and well-documented expectations among development agencies, policymakers and researchers. By contrast, the expectations of direct and indirect mHealth users are not often examined. In preparation for a proposed intervention in the Nouna Health District, in rural Burkina Faso, this study investigates the expected benefits, challenges and limitations associated with mHealth, approaching these expectations as a form of situated knowledge, inseparable from local conditions, practices and experiences. METHODS: The study was conducted within the Nouna Health District. We used a qualitative approach, and conducted individual semi-structured interviews and group interviews (n = 10). Participants included healthcare workers (n = 19), godmothers (n = 24), pregnant women (n = 19), women with children aged 12-24 months (n = 33), and women of childbearing age (n = 92). Thematic and content qualitative analyses were conducted. RESULTS: Participants expect mHealth to help retrieve patients lost to follow-up, improve maternal care monitoring, and build stronger relationships between pregnant women and primary health centres. Expected benefits are not reducible to a technological realisation (sending messages), but rather point towards a wider network of support. mHealth implementation is expected to present considerable challenges, including technological barriers, organisational challenges, gender issues, confidentiality concerns and unplanned aftereffects. mHealth is also expected to come with intrinsic limitations, to be found as obstacles to maternal care access with which pregnant women are confronted and on which mHealth is not expected to have any significant impact. CONCLUSIONS: mHealth expectations appear as situated knowledges, inseparable from local health-related experiences, practices and constraints. This problematises universalistic approaches to mHealth knowledge, while nevertheless hinting at concrete, expected benefits. Findings from this study will help guide the design and implementation of mHealth initiatives, thus optimising their chances for success.

Using a community-based definition of poverty for targeting poor households for premium subsidies in the context of a community health insurance in Burkina Faso.

BACKGROUND: One of the biggest challenges in subsidizing premiums of poor households for community health insurance is the identification and selection of these households. Generally, poverty assessments in developing countries are based on monetary terms. The household is regarded as poor if its income or consumption is lower than a predefined poverty cut-off. These measures fail to recognize the multi-dimensional character of poverty, ignoring community members' perception and understanding of poverty, leaving them voiceless and powerless in the identification process. Realizing this, the steering committee of Nouna's health insurance devised a method to involve community members to better define 'perceived' poverty, using this as a key element for the poor selection. The community-identified poor were then used to effectively target premium subsidies for the insurance scheme. METHODS: The study was conducted in the Nouna's Health District located in northwest Burkina Faso. Participants in each village were selected to take part in focus-group discussions (FGD) organized in 41 villages and 7 sectors of Nouna's town to discuss criteria and perceptions of poverty. The discussions were audio recorded, transcribed and analyzed in French using the software NVivo 9. RESULTS: From the FGD on poverty and the subjective definitions and perceptions of the community members, we found that poverty was mainly seen as scarcity of basic needs, vulnerability, deprivation of capacities, powerlessness, voicelessness, indecent living conditions, and absence of social capital and community networks for support in times of need. Criteria and poverty groups as described by community members can be used to identify poor who can then be targeted for subsidies. CONCLUSION: Policies targeting the poorest require the establishment of effective selection strategies. These policies are well-conditioned by proper identification of the poor people. Community perceptions and criteria of poverty are grounded in reality, to better appreciate the issue. It is crucial to take these perceptions into account in undertaking community development actions which target the poor. For most community-based health insurance schemes with limited financial resources, using a community-based definition of poverty in the targeting of the poorest might be a less costly alternative.

Diverse pathways to care for children with stomach pain in a Canadian cosmopolitan city.

In Montreal, Quebec, 31% of the population is born outside Canada. Yet, only 9% of patient consultations for symptoms associated with functional gastrointestinal disorders (FGIDs) are from immigrants at the Paediatric Gastroenterology Clinic at Sainte-Justine's University Hospital Centre. This discrepancy inspired a multidisciplinary exploratory study (anthropological and paediatric) to examine the sociological, interpretative and pragmatic aspects of immigrant and non-immigrant patients and family life with FGIDs. This paper examines the discrepancy between immigrant and non-immigrant paediatric patients with FGIDs and presents the different pathways to care utilised by families. Semi-structured interviews were carried out between November 2008 and June 2009, with children and their parents. In total, 38 families were recruited: with 27 families (including a child experiencing abdominal pain, his/her siblings, mother and/or father as well as any other significant individual living in the family home) from the community and 11 from the paediatric gastroenterology clinic. A comparative analysis between the immigrant and non-immigrant groups focused on perceptions, meanings and actions taken to relieve/alleviate symptoms. Immigrant and non-immigrant families alternate and combine different therapeutic environments: home, alternative healing therapies and medical paths to care. Our analysis suggests that culture (as a set of values, beliefs and ways of being), as well as social interactions within family life and the clinic, shape pathways to care. The analysis highlights the centrality of receptiveness--and more widely the social dimensions--of all medical encounters. Treatment disparities between immigrant and non-immigrant families in pathways to care help us to understand these patients' social world and the intricate relationships between values and social milieux, between culture, practices of symptom management and rationales guiding diverse therapeutic actions.

Uncertainty, culture and pathways to care in paediatric functional gastrointestinal disorders.

This paper examines how children and families of diverse ethnic backgrounds perceive, understand and treat symptoms related to functional gastrointestinal disorders (FGIDs). It is questioned how different ways of dealing with medical uncertainty (symptoms, diagnosis) may influence treatment pathways. Semi-structured interviews were conducted with 43 children of 38 family groups of immigrant and non-immigrant backgrounds. The analysis takes into account (a) the perceived symptoms; (b) the meaning attributed to them; and (c) the actions taken to relieve them. The social and cultural contexts that permeate these symptoms, meanings and actions were also examined. It is found that, in light of diagnostic and therapeutic uncertainty, non-immigrant families are more likely to consult health professionals. Immigrant families more readily rely upon home remedies, family support and, for some, religious beliefs to temper the uncertainty linked to abdominal pain. Furthermore, non-immigrant children lead a greater quest for legitimacy of their pain at home while most immigrant families place stomach aches in the range of normality. Intracultural variations nuance these findings, as well as family dynamics. It is concluded that different courses of action and family dynamics reveal that uncertainty is dealt with in multiple ways. Family support, the network, and trust in a child's expression of distress are key elements in order to tolerate uncertainty. Lastly, the medical encounter is described as a space permeated with relational uncertainty given the different registers of expression inherent within a cosmopolitan milieu. Narrative practices being an essential dynamic of this encounter, it is questioned whether families' voices are equally heard in these clinical spaces.

Influence of the DSM-IV Outline for Cultural Formulation on multidisciplinary case conferences in mental health.

The Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association (DSM-IV-TR) includes an Outline for Cultural Formulation (CF) that identifies cultural information that can be used to modify diagnosis, clinical assessment and treatment plan. This study examined the use of the CF by a Cultural Consultation Service in the psychiatric assessment of patients referred by primary care providers. The study uses conversation analysis of 12 clinical case conferences to explore the ways in which the CF influenced the interaction of a multidisciplinary group of mental health professionals in conceptualizing the implications of patients' cultural background and current context for diagnosis and treatment planning. The results suggest that the CF can be a useful tool for interdisciplinary collaboration and knowledge transfer by providing a framework to systematically introduce different disciplinary perspectives and levels of description that transcend the narrow frame of disorder-centred psychiatric diagnosis, assessment and care.

[In the name of the human being: reflections on suicide within its root causes]. / Au nom de l'humain : penser le suicide dans ses sources profondes.

In this article, presented as an anthropological essay on the human condition, the author proposes some thoughts likely to support our reflection on the question of suicide, be it biological, sociological or psychological in nature. The framework suggests an invitation to question ourselves on what is the depth of the human being, the ambiguity that marks us, the inherent contradictions that constitutes us, as we are torn between life and death, between positivity and negativity, and the ideology of the "all positive" that tends to generate a dangerous internalization of the "negative." Suicide in its most diversified forms, from substance abuse of all kind, to chronic depression and self-destruction, is thus examined within this fundamental ambiguity which is the mark of our human condition. Experts who attempt to comprehend suicidal behavior are invited to acknowledge our common, always tragic humanity that makes us all human beings.

What is human in humans? Responses from biology, anthropology, and philosophy.

Genomics has brought biology, medicine, agriculture, psychology, anthropology, and even philosophy to a new threshold. In this new context, the question about "what is human in humans" may end up being answered by geneticists, specialists of technoscience, and owners of biotech companies. The author defends, in this article, the idea that humanity is at risk in our age of genetic engineering, biotechnologies, and market-geared genetic research; he also argues that the values at the very core of our postgenomic era bring to its peak the science-based ideology that has developed since the time of Galileo, Newton, Descartes, and Harvey; finally, it shows that the bioindustry has invented a new genomythology that goes against the scientific evidence produced by the research in human sciences in which life is interpreted as a language.

Evaluability Assessment of an immunization improvement strategy in rural Burkina Faso: intervention theory versus reality, information need and evaluations.

An innovative immunization improvement strategy was proposed by the CRSN (Centre de Recherche en Santé de Nouna) to improve the low coverage rate for children aged 0-11 months in the health district of Nouna in Burkina Faso. This article reports on the Evaluability Assessment (EA) study that aimed to orient decisions for its evaluation in close relationship with the information needs of the stakeholders. Various methods were used, including document reviews, individual interviews, focus group discussions, meetings, literature reviews and site visits. A description of the intervention theory and philosophy is provided with its logic models and its reality documented. Lessons on the procedure include the importance of the position of the evaluability assessor, the value of replicating some steps of the assessment and the relationships between EA and process evaluation. The evaluability study concludes that the intervention had some evaluable components. To satisfy the stakeholders' needs, the initially planned community randomized controlled trial can be maintained and complemented with a process evaluation. There is a need to provide sufficient information on the cost of the intervention. This will inform decision makers on the possibility of replicating the intervention in other contexts.

Dr Ravi L. Kapur (1938-2006): a psychiatrist at the crossroads of multiple worlds.

This article reviews the life and work of Dr Ravi L. Kapur, a seminal figure in the fields of social and community psychiatry in India. Kapur made significant contributions to the understanding of the role of spirituality in psychology and psychotherapy and the psychological dynamics of sectarian violence.

Assessment of factors associated with complete immunization coverage in children aged 12-23 months: a cross-sectional study in Nouna district, Burkina Faso.

BACKGROUND: The Expanded Program on Immunization (EPI) is still in need of improvement. In Burkina Faso in 2003, for example, the Nouna health district had an immunization coverage rate of 31.5%, compared to the national rate of 52%. This study identifies specific factors associated with immunization status in Nouna health district in order to advance improved intervention strategies in this district and in those with similar environmental and social contexts. METHODS: A cross-sectional study was undertaken in 41 rural communities and one semi-urban area (urban in the text). Data on 476 children aged 12 to 23 months were analyzed from a representative sample of 489, drawn from the Nouna Health Research Centre's Demographic Surveillance System (DSS) database. The vaccination history of these children was examined. The relationships between their immunization status and social, economic and various contextual variables associated with their parents and households were assessed using Chi square test, Pearson correlation and logistic regression. RESULTS: The total immunization coverage was 50.2% (CI, 45.71; 54.69). Parental knowledge of the preventive value of immunization was positively related to complete immunization status (p = 0.03) in rural areas. Children of parents who reported a perception of communication problems surrounding immunization had a lower immunization coverage rate (p < 0.001). No distance related difference exists in terms of complete immunization coverage within villages and between villages outside the site of the health centres. Children of non-educated fathers in rural areas have higher rates of complete immunization coverage than those in the urban area (p = 0.028). Good communication about immunization and the importance of availability of immunization booklets, as well as economic and religious factors appear to positively affect children's immunization status. CONCLUSION: Vaccination sites in remote areas are intended to provide a greater opportunity for children to access vaccination services. These efforts, however, are often hampered by the poor economic conditions of households and insufficient communication and knowledge regarding immunization issues. While comprehensive communication may improve understanding about immunization, it is necessary that local interventions also take into account religious specificities and critical economic periods. Particular approaches that take into consideration these distinctions need to be applied in both rural and urban settings. ABSTRACT IN FRENCH: See the full article online for a translation of this abstract in French.

Portrait of a lengthy vaccination trajectory in Burkina Faso: from cultural acceptance of vaccines to actual immunization.

BACKGROUND: The global recognition of vaccination is strongly related to the fact that it has proved in the past able to dramatically reduce the incidence of certain diseases. Nevertheless, reactions regarding the practice of vaccination still vary among communities, affecting the worldwide vaccination coverage. Numerous studies, conducted from varying perspectives, have focused on explaining this active refusal or resistance to vaccination. Although in some cases low immunization coverage has been well explained by active refusal or resistance to vaccination, little is known about the reasons for low coverage where those reactions are absent or play a minor role, especially outside an epidemic context. This study attempts to explain this situation, which is found in the health district of Nouna in Burkina Faso. METHODS: An in-depth ethnographic study was undertaken in the health district of Nouna in an effort to understand, from an anthropological point of view, the logic behind the parental decision-making process regarding the vaccination or non-vaccination of children, in a context where rejection of, and reservations concerning vaccination are not major obstacles. RESULTS: Three elements emerged from the analysis: the empirical conceptions of childhood diseases, the perceived efficacy of vaccine and the knowledge of appropriate age for vaccination uptake; the gap between the decision-making process and the actual achievement of vaccination; and the vaccination procedure leading to vaccination uptake in the particular context of the health district of Nouna. CONCLUSION: The procedures parents must follow in order to obtain vaccination for their children appear complex and constraining, and on certain points discord with the traditional systems of meaning and idioms of distress related to pregnancy, the prevention of childhood diseases and with the cultural matrix shaping decision-making and behaviour. Attention needs to be directed at certain promotional, logistical and structural elements, and at the procedure that must currently be followed to obtain vaccination for a child during routine vaccination sessions, which are currently limiting the active demand for vaccination. ABSTRACT IN FRENCH : See the full article online for a translation of this abstract in French.

Translating malaria as sumaya: Justified convention or inappropriateness?

In exchanges between health professionals and consultants in the West African context, the word malaria is often replaced by its equivalent in the local dialect. In the Nouna health district of Burkina Faso the term malaria is regularly translated as sumaya. Acknowledging that there may be important epistemological differences between malaria, a term issued from the biomedical epistemology, and sumaya, which is borrowed from traditional medicine epistemology, the possible mismatches between these two terms have been assessed to anticipate problems that may result from their translation by different health stakeholders. By consulting various traditional healers and other members of the communities about the local meaning of the term sumaya, it has been possible to compare the conceptualisation of sumaya to the biomedical conceptualisation of malaria and assess the gap between them. An investigation based on a sample of 13 traditional healers and over 450 individuals from Nouna's health district was conducted to document the meaning of the term sumaya. This paper demonstrates that the generally accepted translation of the word malaria as sumaya is a mistake when one looks at the different systems of belief and representations given to each of these two terms.