23/10/1990
Sida info service (1990-...)
En 2011, est créée une entité juridique nouvelle « UES SIS », regroupant 3 branches : « SIS Association » (pour les dispositifs d’écoute), « SIS Animation » (pour les actions de terrain en régions) et « Le 190 » (le centre de santé sexuelle). Le 190 a rejoint l’association Aides en 2016 pour être sauvé de la fermeture. SIS Animation fut dissoute en 2019.
Le syndrome de l’immunodéficience acquise, plus connu sous son acronyme sida, est un ensemble de symptômes consécutifs à la destruction de cellules du système immunitaire par le virus de l’immunodéficience humaine (VIH). Le sida est le dernier stade de l’infection au VIH, lorsque l’immunodépression est sévère. Il conduit à la mort par suite des maladies opportunistes auxquelles il donne lieu. Une pandémie s’est développée à partir de la fin des années 1970, faisant de cette maladie un problème sanitaire mondial.
Si des traitements (tri-thérapies) existent depuis 1996, les chercheurs n’ont pour l’instant pas trouvé de traitements (comme un vaccin par exemple) garantissant une guérison complète des malades. De nombreuses inégalités subsistent dans le monde, notamment dans l’accès aux traitements. Si l’épidémie a fortement régressé dans les pays de l’hémisphère nord, dans les pays en développement, plus de 95 % des patients ne bénéficient aujourd’hui d’aucun traitement efficace. Pour cette raison, l’ONU, avec son programme ONUSIDA, a fait de la lutte contre le sida l’une de ses priorités.
Sida Info Service (devenu SIS Association en 2011) est une association régie par la loi du 1er juillet 1901, déclarée le 23 octobre 1990, née de la volonté de militants bénévoles de Aides (autour de Pierre Kneip) et des pouvoirs publics (AFLS). En France, SIS est le premier dispositif téléphonique gratuit, anonyme, confidentiel, 24h/24, 7j/7 fonctionnant avec des professionnels formés pour répondre alors à toutes les questions sur une nouvelle épidémie liée au VIH, et sortir les personnes atteintes de leur isolement. Le premier appel fut décroché le 13 novembre 1990.
Au fil du temps, SIS a su adapter son activité d’écoute téléphonique aux transformations de l’épidémie du VIH/sida, aux infections connexes et aux nouvelles technologies. Elle a élargi très vite son champ d’action aux luttes contre les exclusions, aux hépatites, et de façon plus générale à la santé sexuelle. Son objet s’inscrit dans une démarche de réduction des risques et de soutien individuel.
Au-delà de l’écoute, SIS a diversifié ses activités. En 2010, elle ouvre le premier centre européen de santé sexuelle, « Le 190 ». Elle a formé en France et à l’étranger (en Afrique essentiellement) de nombreux intervenants à la relation d’aide. Elle a élaboré des programmes d’accompagnement auprès de tous les publics vulnérables : migrants, détenus, personnes LGBT, femmes, personnes atteintes, etc.
Depuis sa création, SIS Association est une structure en réseau dont les implantations régionales permettent d’adapter les réponses aux réalités sociologiques et démographiques territoriales tout en assurant la visibilité de l’aide à distance ainsi que les opérations menées au niveau national. Les délégations ont structuré les actions menées auprès des différents publics : jeunes, femmes, gays, migrants, détenus, acteurs sanitaires et sociaux. En 2014, SIS Association s’est recentrée sur l’aide à distance avec trois pôles d’écoute situés à Montreuil, Grenoble et Montpellier.
L’évolution des dispositifs
1990-1995 : « Écouter, informer, soutenir, orienter »
Premier directeur-fondateur, Pierre Kneip (décès en 1995). 8 équipes régionales et 27 PTL (permanences téléphoniques). 50 écoutants salariés. 300 volontaires bénévoles de Aides qui ont gardé leur écoute du soir (jusqu’en 2006). Création conjointe Aides-SIS de Sida Info Droit en 1993 et du minitel 3615 Sidainfo/3615Aides.
1996-2000 : « S’adapter à l’épidémie du VIH »
2e directeur, Yves Ferrarini. Création de VIH Info Soignants en 1996. Ligne de Vie (accompagnement et suivi), Ligne Azur (jeunes et identité sexuelle), Ligne 6 (détenus) en 1997. Hépatites Info service en 1999. Ouverture européenne pour un réseau femmes et la mutualisation des lignes d’écoute existantes. Accès depuis les départements d’Outer-Mer. Informatisation des outils d’écoute (fiches d’appel, annuaire) et début d’internet.
2001-2005 : « Se professionnaliser »
IVG-contraception-Aquitaine et ligne Réponse en langues étrangères en 2001. Droits des malades Info en 2004. Transfert de compétences (aide à la création de lignes, formation des écoutants) au Maghreb et en Afrique subsaharienne, au Cambodge. Apparition de nouveaux outils : mails, forums. Mise en place d’une démarche qualité.
2006-2010 : « Évoluer »
3e directeur, Patrice Gaudineau. Nouveaux champs d’action : Infections Sexuellement Transmissibles, accompagnement des personnes atteintes (sidainfoplus : ligne, chat, site dédié). Ouverture du « 190 » en 2010, 1er centre européen de santé sexuelle. SIS Afrique en 2010 (fédération des lignes africaines).
2011-2015 : « Être leader en PADS » (Prévention par l’Aide à Distance en Santé)
Nouveaux savoirs et savoir-faire. Essor des réseaux sociaux.
2016-2020 : « Se remettre en question »
4e directrice, Docteur Arame Reymes-Mbodje. Nouveaux projets. Projet Guyane. Site Sexualité Information Santé. Écoute-Covid. Réflexion sur un nouveau projet associatif : positionnement sur la Santé sexuelle.
L’écoute
L’écoute à SIS s’inscrit dans la relation d’aide. Elle s’exerce au téléphone et via les nouvelles technologies de communication, on parle ainsi de Relation d’Aide à Distance (RAD). L’État a associé SIS au projet de l’organisation de la Prévention par l’Aide à Distance en Santé (PADS) conduit par l'INPES (Institut National de Prévention et d’Éducation pour la Santé) en 2002, devenue SPF (Santé Publique France) en 2016. La RAD est le cœur de métier de SIS. L’écoute et l’accompagnement proposés à SIS sont basés sur le non-jugement, l’empathie, l’anonymat et la confidentialité. La technique d’écoute pratiquée à SIS est inspirée de Carl Rogers et du counseling anglo-saxon adapté en France.
Les actions
L’écoute et l’analyse des appels ont servi de socle à toutes les missions de SIS : informer, soutenir, orienter, témoigner. Des chargés de mission thématiques et des délégués régionaux ont mené sur le terrain des actions de prévention et d’information auprès de publics spécifiques : femmes, LGBT, migrants, jeunes, détenus. Un service formation a transmis en France et à l’international les compétences de SIS en matière de relation d’aide à distance en santé. De nombreux partenariats associatifs et institutionnels ont permis de multiplier les campagnes de communication et le développement d’actions innovantes (ex : promotion du préservatif féminin).
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