Chronic patient as intermittent partner for policy-makers: the case of patient participation in the fight against diabetes and HIV/AIDS in Mali.
Identifieur interne : 000633 ( Main/Exploration ); précédent : 000632; suivant : 000634Chronic patient as intermittent partner for policy-makers: the case of patient participation in the fight against diabetes and HIV/AIDS in Mali.
Auteurs : Jessica Martini [Belgique] ; Annick Tijou Traoré [France] ; Céline Mahieu [Belgique]Source :
- BMC public health [ 1471-2458 ] ; 2019.
Descripteurs français
- KwdFr :
- MESH :
- prévention et contrôle : Diabète, Infections à VIH.
- psychologie : Personnel administratif.
- Comportement coopératif, Humains, Maladie chronique, Mali, Participation des patients, Processus politique, Recherche qualitative.
- Wicri :
- geographic : Mali.
English descriptors
- KwdEn :
- MESH :
- geographic : Mali.
- prevention & control : Diabetes Mellitus, HIV Infections.
- psychology : Administrative Personnel.
- Chronic Disease, Cooperative Behavior, Humans, Patient Participation, Policy Making, Qualitative Research.
Abstract
BACKGROUND
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. 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.
METHODS
Data 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.
RESULTS
Partnerships 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.
CONCLUSIONS
Chronic 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.
DOI: 10.1186/s12889-019-7453-2
PubMed: 31455367
PubMed Central: PMC6712700
Affiliations:
- Belgique, France
- Aquitaine, Nouvelle-Aquitaine, Région de Bruxelles-Capitale
- Bordeaux, Bruxelles
- Université libre de Bruxelles
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type="city">Bordeaux</settlement></placeName></affiliation></author><author><name sortKey="Mahieu, Celine" sort="Mahieu, Celine" uniqKey="Mahieu C" first="Céline" last="Mahieu">Céline Mahieu</name><affiliation wicri:level="4"><nlm:affiliation>Université libre de Bruxelles, School of Public Health, Route de Lennik 808, Brussels, Belgium, CP 596, 1070, Brussels, Belgium.</nlm:affiliation><country xml:lang="fr">Belgique</country><wicri:regionArea>Université libre de Bruxelles, School of Public Health, Route de Lennik 808, Brussels, Belgium, CP 596, 1070, Brussels</wicri:regionArea><placeName><settlement type="city">Bruxelles</settlement><region nuts="2">Région de Bruxelles-Capitale</region></placeName><orgName type="university">Université libre de Bruxelles</orgName></affiliation></author></analytic><series><title level="j">BMC public health</title><idno type="eISSN">1471-2458</idno><imprint><date when="2019" type="published">2019</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Administrative Personnel (psychology)</term><term>Chronic Disease (MeSH)</term><term>Cooperative Behavior (MeSH)</term><term>Diabetes Mellitus (prevention & control)</term><term>HIV Infections (prevention & control)</term><term>Humans (MeSH)</term><term>Mali (MeSH)</term><term>Patient Participation (MeSH)</term><term>Policy Making (MeSH)</term><term>Qualitative Research (MeSH)</term></keywords><keywords scheme="KwdFr" xml:lang="fr"><term>Comportement coopératif (MeSH)</term><term>Diabète (prévention et contrôle)</term><term>Humains (MeSH)</term><term>Infections à VIH (prévention et contrôle)</term><term>Maladie chronique (MeSH)</term><term>Mali (MeSH)</term><term>Participation des patients (MeSH)</term><term>Personnel administratif (psychologie)</term><term>Processus politique (MeSH)</term><term>Recherche qualitative (MeSH)</term></keywords><keywords scheme="MESH" type="geographic" xml:lang="en"><term>Mali</term></keywords><keywords scheme="MESH" qualifier="prevention & control" xml:lang="en"><term>Diabetes Mellitus</term><term>HIV Infections</term></keywords><keywords scheme="MESH" qualifier="prévention et contrôle" xml:lang="fr"><term>Diabète</term><term>Infections à VIH</term></keywords><keywords scheme="MESH" qualifier="psychologie" xml:lang="fr"><term>Personnel administratif</term></keywords><keywords scheme="MESH" qualifier="psychology" xml:lang="en"><term>Administrative Personnel</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Chronic Disease</term><term>Cooperative Behavior</term><term>Humans</term><term>Patient Participation</term><term>Policy Making</term><term>Qualitative Research</term></keywords><keywords scheme="MESH" xml:lang="fr"><term>Comportement coopératif</term><term>Humains</term><term>Maladie chronique</term><term>Mali</term><term>Participation des patients</term><term>Processus politique</term><term>Recherche qualitative</term></keywords><keywords scheme="Wicri" type="geographic" xml:lang="fr"><term>Mali</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><p><b>BACKGROUND</b></p><p>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. 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.</p></div><div type="abstract" xml:lang="en"><p><b>METHODS</b></p><p>Data 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.</p></div><div type="abstract" xml:lang="en"><p><b>RESULTS</b></p><p>Partnerships 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.</p></div><div type="abstract" xml:lang="en"><p><b>CONCLUSIONS</b></p><p>Chronic 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.</p></div></front></TEI><pubmed><MedlineCitation Status="MEDLINE" IndexingMethod="Curated" Owner="NLM"><PMID Version="1">31455367</PMID><DateCompleted><Year>2019</Year><Month>11</Month><Day>22</Day></DateCompleted><DateRevised><Year>2020</Year><Month>02</Month><Day>25</Day></DateRevised><Article PubModel="Electronic"><Journal><ISSN IssnType="Electronic">1471-2458</ISSN><JournalIssue CitedMedium="Internet"><Volume>19</Volume><Issue>1</Issue><PubDate><Year>2019</Year><Month>Aug</Month><Day>28</Day></PubDate></JournalIssue><Title>BMC public health</Title><ISOAbbreviation>BMC Public Health</ISOAbbreviation></Journal><ArticleTitle>Chronic patient as intermittent partner for policy-makers: the case of patient participation in the fight against diabetes and HIV/AIDS in Mali.</ArticleTitle><Pagination><MedlinePgn>1179</MedlinePgn></Pagination><ELocationID EIdType="doi" ValidYN="Y">10.1186/s12889-019-7453-2</ELocationID><Abstract><AbstractText Label="BACKGROUND" NlmCategory="BACKGROUND">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. 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.</AbstractText><AbstractText Label="METHODS" NlmCategory="METHODS">Data 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.</AbstractText><AbstractText Label="RESULTS" NlmCategory="RESULTS">Partnerships 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.</AbstractText><AbstractText Label="CONCLUSIONS" NlmCategory="CONCLUSIONS">Chronic 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.</AbstractText></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Martini</LastName><ForeName>Jessica</ForeName><Initials>J</Initials><Identifier Source="ORCID">http://orcid.org/0000-0001-9276-7863</Identifier><AffiliationInfo><Affiliation>Université libre de Bruxelles, School of Public Health, Route de Lennik 808, Brussels, Belgium, CP 596, 1070, Brussels, Belgium. jmartini@ulb.ac.be.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Tijou Traoré</LastName><ForeName>Annick</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>Research laboratory LAM (Les Afriques dans le Monde) / Institute of Political Studies, CNRS/UMR 5115/University of Bordeaux, 11 allée Ausone, Domaine universitaire, 33607, Pessac, Bordeaux, France.</Affiliation></AffiliationInfo></Author><Author 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Bruxelles-Capitale</li></region><settlement><li>Bordeaux</li><li>Bruxelles</li></settlement><orgName><li>Université libre de Bruxelles</li></orgName></list><tree><country name="Belgique"><region name="Région de Bruxelles-Capitale"><name sortKey="Martini, Jessica" sort="Martini, Jessica" uniqKey="Martini J" first="Jessica" last="Martini">Jessica Martini</name></region><name sortKey="Mahieu, Celine" sort="Mahieu, Celine" uniqKey="Mahieu C" first="Céline" last="Mahieu">Céline Mahieu</name></country><country name="France"><region name="Nouvelle-Aquitaine"><name sortKey="Tijou Traore, Annick" sort="Tijou Traore, Annick" uniqKey="Tijou Traore A" first="Annick" last="Tijou Traoré">Annick Tijou Traoré</name></region></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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