Abstract
BackgroundNational and international strategies have increasingly promoted chronic patient participation at different levels of the health care system, building the image of an ‘active’ chronic patient engaged for example in his/her daily self-care and within associations dealing with service delivery and/or policy advocacy. Drawing upon examples of the fight against diabetes and HIV/AIDS in Mali, this article explores the factors that influence the engagement of patient associations at policy level. We focus on the openness of the institutionalised political system, and explore the role that public authorities, caregivers and donors give to diabetes and HIV/AIDS patients.MethodsData was collected between 2008 and 2014 in Bamako in the framework of a qualitative research. Thirty-eight actors fighting against diabetes were interviewed, as well as 17 representatives of donors. For HIV/AIDS, 27 actors were interviewed. In both cases, non-participant observation was carried out and documentary sources were collected. Based on theory of public and collective action, a historical and cognitive approach was adopted. Data analysis followed an inductive and iterative method.ResultsPartnerships between public authorities and diabetes patient associations have been intermittent over time and remained rather informal. In the case of people living with HIV/AIDS, the partnership between their associations and public authorities has steadily grown and was progressively institutionalised. Three political factors explain this difference: focus and extent of the commitment of public authorities, existing policy-making processes, and how the law frames patients’ roles. Moreover, opportunities for patient participation depend on the nature and extent of the support provided by international donors. Finally, the cognitive dimension is also at stake, notably in relation to the way the two diseases and patients have been perceived by public authorities, caregivers, and donors.ConclusionsChronic patients are intermittent partners for policy-makers. Despite the image of chronic active patients conveyed by national and international public health strategies, patient participation is not straightforward. Rather, political, economic, and cognitive factors underpin the presence of political opportunities that enable patient participation. Chronicity of the disease appears to play an ambiguous role in the shaping of these factors.
Highlights
National and international strategies have increasingly promoted chronic patient participation at different levels of the health care system, building the image of an ‘active’ chronic patient engaged for example in his/her daily self-care and within associations dealing with service delivery and/or policy advocacy
We focus on the openness of the Malian institutionalised political system, and explore the role that public authorities, caregivers and donors give to diabetes and Human immunodeficiency virus (HIV)/Acquired immunodeficiency syndrome (AIDS) patients
Our findings highlight that the relative openness of the Malian political system to patient participation in the fight against diabetes and HIV/AIDS is linked to political, economic, and cognitive factors
Summary
National and international strategies have increasingly promoted chronic patient participation at different levels of the health care system, building the image of an ‘active’ chronic patient engaged for example in his/her daily self-care and within associations dealing with service delivery and/or policy advocacy. Sociological literature on chronic diseases shows how living with long-term illness lets patients acquire experiential knowledge that they can use to supplement and challenge the scientific knowledge of healthcare professional [1] Recognising this lay expertise, national and international strategies have increasingly promoted chronic patient participation, building the image of an ‘active’ chronic patient engaged at different levels of the health care system [2, 3]. We focus on the openness of the Malian institutionalised political system, and explore the role that public authorities, caregivers and donors give to diabetes and HIV/AIDS patients Understanding these factors is crucial to develop effective participatory strategies for prevention and control of chronic diseases [11]. It ensures that policy makers acknowledge the complexity of participation dynamics and go beyond the overly simplistic view of a linear relationship between chronicity of a disease, patients’ acquired expertise on a disease, and patients’ capacity to organise and participate in health decision-making
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