Georganiseerd lotgenotencontact Jong en Kanker

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Georganiseerd lotgenotencontact Jong en kanker

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Stichting Jongeren en Kanker, brancheorganisatie IPSO en Vereniging Kinderkanker Nederland werkten samen met kennispartners het AYA ‘Jong & Kanker’ Zorgnetwerk en het Prinses Máxima Centrum binnen het project ‘Georganiseerd lotgenotencontact voor de Jong en Kanker doelgroep’, dat werd gefinancierd door KWF Kankerbestrijding.

Het projectteam ging gedurende een periode van drie jaar (2023-2025) aan de slag met het in kaart brengen van het huidige aanbod van georganiseerd lotgenotencontact voor de Jong en Kanker doelgroep en het landelijk coördineren en regionaal verder uitrollen hiervan. Zodat we elkaar als organisaties kunnen versterken en een zo passend mogelijk aanbod kunnen bieden aan jonge mensen die zelf leven met of na kanker en hun naasten.

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Met georganiseerd lotgenotencontact doelen we op de ‘gezellige’, ontspannen activiteiten en thema- en naasten bijeenkomsten met een informatief karakter voor de Jong en Kanker doelgroep en hun naasten. In beide gevallen kan men op ongedwongen manier in contact komen met lotgenoten.

Doel van het project is dat het volledige aanbod aan georganiseerd lotgenotencontact samenkomt op één overzichtelijke digitale kalender, de Nationale Agenda Kanker (NAK) op Kanker.nl. Zo vinden (ex-)patiënten en naasten gemakkelijker datgene wat aansluit bij hun wensen en behoeften, zowel landelijk als in de regio en kunnen zorgverleners gerichter doorverwijzen.

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Jong en Kanker doelgroep

Wanneer we spreken over de Jong en Kanker doelgroep, hebben we het over jongvolwassenen tussen de 16 en 40 jaar die zelf (kinder)kanker hebben of hebben gehad en hun naasten. Ongeacht de prognose.

NB: We hebben het hier dus niet over jongeren waarvan een ouder of ander familielid ziek is.

De ‘Jong en Kanker’ doelgroep bestaat uit:

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Jongeren;
die in het Prinses Máxima Centrum behandeld worden voor een vorm van kinderkanker (16 t/m 18 jaar). Dit betreft op jaarbasis ongeveer 150 nieuwe diagnoses.

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Kinderkanker overlevers;
Jongvolwassenen van 18 – 40 jaar die kinderkanker hebben gehad en die, wanneer wenselijk, op de zogeheten LATER-poli gecontroleerd worden op lange termijn gevolgen van hun kinderkanker en de behandeling die ze daarvoor kregen.

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AYA’s;
Dit zijn jongvolwassenen die in de leeftijd van 18 tot en met 39 jaar de diagnose kanker krijgen. Per jaar krijgen ongeveer 3.900 jongvolwassenen de diagnose kanker.

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Naasten;
Dit zijn ouder(s), partners, broer(s) of zus(sen) en vrienden van de hiernaast genoemde drie groepen.

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Stichting Jongeren en Kanker is de patiëntenorganisatie voor jonge mensen tussen de 18 en 40 jaar die kanker hebben (gehad) en hun naasten.

SJK organiseert lotgenotencontact en behartigt de belangen van deze doelgroep in beleid en politiek. Ook werkt zij mee aan (de opzet van) wetenschappelijk onderzoek en ontwikkeling van leeftijdsgerichte informatiematerialen. Alles voor én door de Jong en Kanker doelgroep.

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AYA-zorg is leeftijdsspecifieke zorg voor jongvolwassenen gediagnosticeerd met kanker in de leeftijd van 18 – 40 jaar. AYA-zorg is medisch specialistische zorg, en heeft vanaf diagnose aandacht voor alle leeftijdsspecifieke thema’s, geïntegreerd in de reguliere kankerzorg. De verpleegkundige (specialist) speelt een centrale rol als het gaat om het detecteren, monitoren en proactief inspelen op leeftijdsspecifieke problematiek.

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Het AYA Fonds is de fondsenwerver van het AYA ‘Jong & Kanker’ Zorgnetwerk. Daarnaast werken zij aan meer maatschappelijke bekendheid rondom kanker op jonge leeftijd.

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Brancheorganisatie IPSO versterkt de bij hen aangesloten IPSO centra, zodat zij mensen met kanker en hun naasten psychosociale zorg op maat kunnen bieden. IPSO biedt psychosociale zorg. Laagdrempelig en altijd dichtbij. We focussen op kwaliteit van leven, waarbij we altijd uitgaan van de behoefte van de gast.

Vereniging Kinderkanker Nederland is de patiëntenvereniging voor iedereen die te maken heeft (gehad) met kinderkanker. Zowel kinderen die nu ziek zijn, als hun naasten zoals (groot)ouders, broers en zussen en de overlevers van kinderkanker.

Als mede-oprichter van het Prinses Máxima Centrum werkt de Vereniging Kinderkanker Nederland op verschillende terreinen nauw met hen samen, zoals met de Kanjerketting, de LATER-poli, de verbetering van kwaliteit van leven van kinderen met en na kanker én onderzoek naar (de late-effecten van) kinderkanker.

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VOX is het netwerk voor overlevers van kinderkanker, door overlevers van kinderkanker. VOX is onderdeel van Vereniging Kinderkanker Nederland en biedt lotgenotencontact en informatie over het LATER-onderzoek en zorg, late- en maatschappelijke effecten. Daarnaast is VOX nauw betrokken bij het verbeteren van de LATER-zorg voor kinderkankeroverlevers, nationaal en internationaal.

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Bezoek de toolkit pagina met downloads voor alle handige documenten rondom het project ‘Georganiseerd lotgenotencontact Jong en Kanker doelgroep’.

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