« Moi j’ai pitié de moi-même ! » : le vécu ordinaire d’un enfant drépanocytaire à Bamako

Sickle cell disease is a disease that affects the quality of life of many young Malians. Some social science research has focused on popular representations of this disease. However, almost nothing is known about how sickle cell disease affects the lives of adolescents, particularly from the point of view of relations with the family circle. The ambition of this work is to contribute to filling this gap. We decided to collect the data for this research based on the biographical accounts of an adolescent girl and her family circle. In total, we conducted 10 interviews between the months of June and July 2018. All interviews were transcribed and subjected to content analysis. The results of the study show that sickle cell disease is a disabling disease. It creates tensions between siblings on the one hand, and parents and other children on the other, mainly because of the "privileges" granted to the child as a result of medical recommendations (partial exemption from domestic chores, individual meals, etc.). Young patients engage in coping strategies to preserve social ties. Our study has highlighted the particularly difficult situation of the sickle cell child who faces a double challenge: the suffering of the disease and the psychological suffering. A complete care must take account of this double suffering.  La drépanocytose est une maladie qui affecte la qualité de vie de beaucoup de jeunes maliens. Certains travaux en science sociale se sont intéressés aux représentations populaires de cette maladie. Cependant, on ne sait presque rien de la façon dont la drépanocytose affecte la vie des adolescents notamment du point de vue des relations avec l’entourage familial. L’ambition de ce travail est de contribuer à combler ce vide. Nous avons décidé de collecter les données de cette recherche en nous basant sur les récits biographiques recueillies auprès d’une adolescente et de son entourage familial. Au total, nous avons réalisé 10 entretiens entre les mois de juin et juillet 2018. Tous les entretiens ont été retranscrits et soumises à une analyse de contenu. Les résultats de l’étude montrent que la drépanocytose est une maladie handicapante. Elle crée des tensions entre les frères et sœurs d’un côté, les parents et les autres enfants de l’autre essentiellement à cause des « privilèges » accordées » à l’enfant et découlant des recommandations médicales (exemption partielle des tâches domestiques, plats individuels, etc.). Les jeunes patients s’engagent dans des stratégies d’adaptation pour préserver les liens sociaux. Note étude a permis de mettre en évidence la situation particulièrement difficile de l’enfant drépanocytaire qui fait face à un double défi : la souffrance de la maladie et la souffrance psychologique. Une prise en charge complète doit tenir compte de cette double souffrance

« Moi j’ai pitié de moi-même ! » : le vécu ordinaire d’un enfant drépanocytaire à Bamako

Sickle cell disease is a disease that affects the quality of life of many young Malians. Some social science research has focused on popular representations of this disease. However, almost nothing is known about how sickle cell disease affects the lives of adolescents, particularly from the point of view of relations with the family circle. The ambition of this work is to contribute to filling this gap. We decided to collect the data for this research based on the biographical accounts of an adolescent girl and her family circle. In total, we conducted 10 interviews between the months of June and July 2018. All interviews were transcribed and subjected to content analysis. The results of the study show that sickle cell disease is a disabling disease. It creates tensions between siblings on the one hand, and parents and other children on the other, mainly because of the "privileges" granted to the child as a result of medical recommendations (partial exemption from domestic chores, individual meals, etc.). Young patients engage in coping strategies to preserve social ties. Our study has highlighted the particularly difficult situation of the sickle cell child who faces a double challenge: the suffering of the disease and the psychological suffering. A complete care must take account of this double suffering.  La drépanocytose est une maladie qui affecte la qualité de vie de beaucoup de jeunes maliens. Certains travaux en science sociale se sont intéressés aux représentations populaires de cette maladie. Cependant, on ne sait presque rien de la façon dont la drépanocytose affecte la vie des adolescents notamment du point de vue des relations avec l’entourage familial. L’ambition de ce travail est de contribuer à combler ce vide. Nous avons décidé de collecter les données de cette recherche en nous basant sur les récits biographiques recueillies auprès d’une adolescente et de son entourage familial. Au total, nous avons réalisé 10 entretiens entre les mois de juin et juillet 2018. Tous les entretiens ont été retranscrits et soumises à une analyse de contenu. Les résultats de l’étude montrent que la drépanocytose est une maladie handicapante. Elle crée des tensions entre les frères et sœurs d’un côté, les parents et les autres enfants de l’autre essentiellement à cause des « privilèges » accordées » à l’enfant et découlant des recommandations médicales (exemption partielle des tâches domestiques, plats individuels, etc.). Les jeunes patients s’engagent dans des stratégies d’adaptation pour préserver les liens sociaux. Note étude a permis de mettre en évidence la situation particulièrement difficile de l’enfant drépanocytaire qui fait face à un double défi : la souffrance de la maladie et la souffrance psychologique. Une prise en charge complète doit tenir compte de cette double souffrance

Stakeholder Perceptions and Context of the Implementation of Performance-Based Financing in District Hospitals in Mali

Background: To improve the performance of the healthcare system, Mali’s government implemented a pilot project of performance-based financing (PBF) in the field of reproductive health. It was established in the Koulikoro region. This research analyses the process of implementing PBF at district hospital (DH) level, something which has rarely been done in Africa.Methods: This qualitative research is based on a multiple, explanatory, and contrasting case study with nested levels of analysis. It covered three of the 10 DHs in the Koulikoro region. We conducted 36 interviews: 12 per DH with council of circle’s members (2) and health personnel (10). We also conducted 24 non-participant observation sessions, 16 informal interviews, and performed a literature review. We performed data analysis using the Consolidated Framework for Implementation Research (CFIR).Results: Stakeholders perceived the PBF pilot project as a vertical intervention from outside that focused solely on reproductive health. Local actors were not involved in the design of the PBF model. Several difficulties regarding the quality of its design and implementation were highlighted: too short duration of the intervention (8 months), choice and insufficient number of indicators according to the priority of the donors, and impossibility of making changes to the model during its implementation. All health workers adhered to the principles of PBF intervention. Except for members of the district health management team (DHMT) involved in the implementation, respondents only had partial knowledge of the PBF intervention. The implementation of PBF appeared to be easier in District 3 Hospital compared to District 1 and District 2 because it benefited from a pre-pilot project and had good leadership.Conclusion: The PBF programme offered an opportunity to improve the quality of care provided to the population through the motivation of health personnel in Mali. However, several obstacles were observed during the implementation of the PBF pilot project in DHs. When designing and implementing PBF in DHs, it is necessary to consider factors that can influence the implementation of a complex intervention

Implementing performance-based financing in peripheral health centres in Mali : what can we learn from it?

The study findings revealed that the internal context of performance-based financing (PBF) implementation played a key role in the process of improving health system performance. High-performing primary healthcare facilities exercised leadership and commitment. These two characteristics were associated with taking initiatives to promote PBF implementation and strengthening team spirit. The PBF project in Mali discussed in this article was funded by the World Bank as part of a larger initiative towards improved reproductive health. With few exceptions, PBF was perceived as a complicated intervention to implement, partly because of data management procedures.Canadian Institutes of Health Research (CIHR)Canadian Global Affairs (GAC

Stakeholder perceptions and context of the implementation of performance-based financing in district hospitals in Mali

This research analyzes the process of implementing performance-based financing (PBF) at district hospital (DH) level in Mali. Problems such as malfunctioning management bodies, or mobilizing staff for meetings prevented adequate implementation of PBF. Communication channels and tools were defective in the vast majority of DHs. In addition, there were problems in motivation of health workers. The article provides background to PBF initiatives and examines specific data in relation to district hospitals. Performance-based financing (PBF) is a mechanism whereby health facilities are paid on the basis of their performance, which is measured by the quantity and quality of services they provide

Does the gap between health workers' expectations and the realities of implementing a performance-based financing project in Mali create frustration?

BACKGROUND: Performance-Based Financing (PBF), an innovative health financing initiative, was recently implemented in Mali. PBF aims to improve quality of care by motivating health workers. The purpose of this research was to identify and understand how health workers' expectations related to their experiences of the first cycle of payment of PBF subsidies, and how this experience affected their motivation and sentiments towards the intervention. We pose the research question, "how does the process of PBF subsidies impact the motivation of health workers in Mali?" METHODS: We adopted a qualitative approach using multiple case studies. We chose three district hospitals (DH 1, 2 and 3) in three health districts (district 1, 2 and 3) among the ten in the Koulikoro region. Our cases correspond to the three DHs. We followed the principle of data source triangulation; we used 53 semi-directive interviews conducted with health workers (to follow the principle of saturuation), field notes, and documents relating to the distribution grids of subsidies for each DH. We analyzed data in a mixed deductive and inductive manner. RESULTS: The results show that the PBF subsidies led to health workers feeling more motivated to perform their tasks overall. Beyond financial motivation, this was primarily due to PBF allowing them to work more efficiently. However, respondents perceived a discrepancy between the efforts made and the subsidies received. The fact that their expectations were not met led to a sense of frustration and disappointment. Similarly, the way in which the subsidies were distributed and the lack of transparency in the distribution process led to feelings of unfairness among the vast majority of respondents. The results show that frustrations can build up in the early days of the intervention. CONCLUSION: The PBF implementation in Mali left health workers frustrated. The short overall implementation period did not allow actors to adjust their initial expectations and motivational responses, neither positive nor negative. This underlines how short-term interventions might not just lack impact, but instil negative sentiments likely to carry on into the future