One of the assumptions made when mental problems are defined as a medical problem is that certain problems, certain diagnoses, are chronic. Nevertheless, a substantial number of follow-up studies have shown that the course of development in patients with these diagnoses is neither uniform nor chronic. The aim of this dissertation is to summarise the state of the art in the knowledge about recovery from severe mental disorders and to examine in depth which factors people who have recovered regard as having helped them in their recovery, and in which ways. These two aims have resulted in two separate but complementary presentations of results. The review of the state of the art, which focuses on the diagnosis schizophrenia, shows that some two-thirds of the patients who received this diagnosis have recovered, either totally or socially. The variation in the percentage of persons who have recovered is explained in the study by such factors as fluctuations in national and local unemployment rates, in definitions of the diagnoses and in access to psychiatric care. On the other hand, the introduction of various treatment interventions seems to have had no noticeable effect on the recovery rate, although it has affected the relapse frequency. There is still a long way to go towards understanding the recovery process and how it can be facilitated. The interview study with persons who have been treated for severe mental disorders and recovered show the patients themselves to be a crucial factor in their own recovery. Throughout the whole course of the disorder, they struggle to find ways to manage both their symptoms and the factors that cause them. What appears to others as symptoms might instead be theperson’s unsuccessful attempts to manage existential problems. Entering into and maintaining relationships with other people is another crucial factor in recovery work. Professionals from a variety of backgrounds as well as family members and other laypersons can contribute to recovery, first and foremost in that they represent continuity between diverse facets of the person’s life; they engage with the person in his/her full complexity, not as someone reduced to a diagnosis and a given patient role, nor by denying the fact of the person’s suffering. Still another factor in recovery work is material conditions which impact on the person’s possibility to regain an identity as a full member of the community. Lastly, the descriptions that the respondents give of their recovery practice have certain constructed meanings in common. These meanings can be categorised as medical, therapeutic, spiritual and interactional. In many of the life stories collected in this study, several of these categories of meaning appear in unison, co-existing in one and the same life story. There is a recurrent theme running through these practice stories of recovery: that people in their everyday lives are not reducible to their problems, but at the same time these problems must not be denied. That people have both weaknesses and strengths, sometimes existing within the same spheres of life and occurring simultaneously; but that in relationships with other people they are given scope to manage and live with these contradictions is of central importance for recovery practice.

Health economists, national decision-makers and global health specialists have been interested in calculating the cost of a disease for many years. Only more recently they started to generate more comprehensive frameworks and tools to estimate the full range of healthcare related costs of illness in a user’s perspective in resource-poor settings. There is now an ongoing trend to guide health policy, and identify the most effective ways to achieve universal health coverage. The user fee exemptions health financing schemes, which grounded the tuberculosis control strategy, have been designed to improve access to essential care for ill individuals with a low capacity to pay. After decades of functioning and substantial progress in tuberculosis detection rate and treatment success, this thesis analyses the extent of the coverage (financial and social protection) of two disease control programs in West Africa. Learning from the concept of the medical poverty trap (Whitehead, Dahlgren, et Evans 2001) and available framework related to the economic consequences of illness (McIntyre et al. 2006), a conceptual framework and a data collection tool have been developed to incorporate the direct, indirect and intangible costs and consequences of illness incurred by chronic patients. In several ways, we have sought to provide baseline for comprehensive analysis and standardized methodology to allow comparison across settings, and to contribute to the development of evidence-based knowledge.<p><p>To begin, filling a knowledge gap (Russell 2004), we have performed microeconomic research on the households’ costs-and-consequences-of-tuberculosis in Burkina Faso and Benin. The two case studies have been conducted both in rural and urban resource-poor settings between 2007 and 2009. This thesis provides new empirical findings on the remaining financial, social and ‘healthcare delivery related organizational’ barriers to access diagnosis and treatment services that are delivered free-of-charge to the population. The direct costs associated with illness incurred by the tuberculosis pulmonary smear-positive patients have constituted a severe economic burden for these households living in permanent budget constraints. Most of these people have spent catastrophic health expenditure to cure tuberculosis and, at the same time, have faced income loss caused by the care-seeking. To cope with the substantial direct and indirect costs of tuberculosis, the patients have shipped their families in impoverishing strategies to mobilize funds for health such as depleting savings, being indebted and even selling livestock and property. Damaging asset portfolios of the disease-affected households on the long run, the coping strategies result in a public health threat. In resource-poor settings, the lack of financial protection for health may impose inability to meet basic needs such as the rights to education, housing, food, social capital and access to primary healthcare. Special feature of our work lies in the breakdown of the information gathered. We have been able to demonstrate significant differences in the volume and nature of the amounts spent across the successive stages of the care-seeking pathway. Notably, pre-diagnosis spending has been proved critical both in the rural and urban contexts. Moreover, disaggregated cost data across income quintiles have highlighted inequities in relation to the direct costs and to the risk of incurring catastrophic health expenditure because of tuberculosis. As part of the case studies, the tuberculosis control strategies have failed to protect the most vulnerable care users from delayed diagnosis and treatment, from important spending even during treatment – including significant medical costs, and from hidden costs that might have been exacerbated by poor health systems. To such devastating situations, the tuberculosis patients have had to endure other difficulties; we mean intangible costs such as pain and suffering including stigmatization and social exclusion as a result of being ill or attending tuberculosis care facilities. The analysis of all the social and economic consequences for tuberculosis-affected households over the entire care-seeking pathway has been identified as an essential element of future cost-of-illness evaluations, as well as the need to conduct benefit incidence assessment to measure equity.<p><p>This work has allowed identifying a series of policy weaknesses related to the three dimensions of the universal health coverage for tuberculosis (healthcare services, population and financial protection coverage). The findings have highlighted a gap between the standard costs foreseen by the national programs and the costs in real life. This has suggested that the current strategies lack of patient-centered care, context-oriented approaches and systemic vision resulting in a quality issue in healthcare delivery system (e.g. hidden healthcare related costs). Besides, various adverse effects on households have been raised as potential consequences of illness; such as illness poverty trap, social stigma, possible exclusion from services and participation, and overburdened individuals. These effects have disclosed the lack of social protection at the country level and call for the inclusion of tuberculosis patients in national social schemes. A last policy gap refers to the lack of financial protection and remaining inequities with regards to catastrophic health expenditure still occurring under use fee exemptions strategies. Thereby, one year before 2015 – the deadline set for the Millennium Development Goals – it is a matter of priority for Benin and Burkina Faso and many other countries to tackle adverse effects of the remaining social, economic and health policy and system related barriers to tuberculosis control. These factors have led us to emphasize the need for countries to develop sustainable knowledge. <p><p>National decision-makers urgently need to document the failures and bottlenecks. Drawing on the findings, we have considered different ways to strengthen local capacity and generate bottom-up decision-making. To get there, we have shaped a decision framework intended to produce local evidence on the root causes of the lack of policy responsiveness, synthesize available evidence, develop data-driven policies, and translate them into actions.<p><p>Beyond this, we have demonstrated that controlling tuberculosis was much more complex than providing free services. The socio-economic context in which people affected by this disease live cannot be dissociated from health policy. The implications of microeconomic research on the households’ costs and responses to tuberculosis may have a larger scope than informing implementation and adaptation of national disease-specific strategies. They can be of great interest to support the definition of guiding principles for further research on social protection schemes, and to produce evidence-based targets and indicators for the reduction and the monitoring of economic burden of illness. In this thesis, we have build on prevailing debates in the field and formulated different assumptions and proposals to inform the WHO Global Strategy and Targets for Tuberculosis Prevention, Care and Control After 2015. For us, to reflect poor populations’ needs and experiences, global stakeholders should endorse bottom-up and systemic policy-making approaches towards sustainable people-centered health systems.<p><p>The findings of the thesis and the various global and national challenges that have emerged from case studies are crucial as the problems we have seen for tuberculosis in West Africa are not limited to this illness, and far outweigh the geographical context of developing countries.<p><p><p>Keywords: Catastrophic health expenditure, Coping strategies, Cost-of-illness studies, Direct, indirect and intangible costs, Evidence-based Public health, Financial and Social protection for health, Health Economics, Health Policy and Systems, Informed Decision-making, Knowledge translation, People-centered policy-making, Systemic approach, Universal Health Coverage<p> / Doctorat en Sciences de la santé publique / info:eu-repo/semantics/nonPublished