{"id":282003,"date":"2026-11-13T10:10:03","date_gmt":"2026-11-13T09:10:03","guid":{"rendered":"https:\/\/zorgondersteuningsfonds.nl\/wordpress\/?post_type=project&p=282003"},"modified":"2026-11-13T10:10:03","modified_gmt":"2026-11-13T09:10:03","slug":"palliatieve-zorg-voor-mensen-met-ernstige-psychiatrische-aandoeningen-epa","status":"publish","type":"project","link":"https:\/\/zorgondersteuningsfonds.nl\/wordpress\/project\/palliatieve-zorg-voor-mensen-met-ernstige-psychiatrische-aandoeningen-epa\/","title":{"rendered":"Palliatieve zorg voor mensen met ernstige psychiatrische aandoeningen (EPA)"},"content":{"rendered":"

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Meer aandacht voor kwaliteit van leven, wensen en grenzen in de laatste levensfase<\/h5>\n

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Mensen met ernstige psychiatrische aandoeningen (EPA) overlijden gemiddeld aanzienlijk jonger dan de algemene bevolking. Lichamelijke aandoeningen, psychiatrische problematiek, stigma en versnipperde zorg bemoeilijken het tijdig herkennen van palliatieve zorgbehoeften <\/strong>(zorg gericht op kwaliteit van leven en comfort als genezen niet meer mogelijk is). Hierdoor bestaat het risico dat passende ondersteuning te laat of onvoldoende wordt geboden. Palliatieve zorg is gericht op kwaliteit van leven, kan jarenlang nodig zijn en is een fundamenteel recht voor iedereen, dus ook voor mensen met EPA.<\/p>\n

Dit promotieonderzoek heeft als doel bij te dragen aan tijdige, passende en persoonsgerichte palliatieve zorg voor mensen met EPA en hun naasten binnen de Nederlandse GGZ. Centraal staat de vraag hoeveel langdurig opgenomen pati\u00ebnten een palliatieve zorgbehoefte hebben, in hoeverre de huidige zorg hierop aansluit en wat pati\u00ebnten, naasten en zorgprofessionals nodig hebben om deze zorg duurzaam te verbeteren.<\/p>\n

Het onderzoek wordt uitgevoerd vanuit GGZ Centraal in samenwerking met het UMCG, GGZ Drenthe en studenten geneeskunde en psychologie. Via een mixed-methods onderzoeksopzet worden kwantitatieve en kwalitatieve gegevens gecombineerd. Door middel van een Group Concept Mapping-studie, een klinische cohortstudie en verdiepende kwalitative interviews worden zowel de omvang van de problematiek als de ervaringen, behoeften en knelpunten in kaart gebracht. De resultaten bieden concrete aanknopingspunten voor betere herkenning, proactieve zorgplanning en ketensamenwerking.<\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Text & Image” _builder_version=”4.16″ _module_preset=”default” locked=”off” collapsed=”on” global_colors_info=”{}”][et_pb_row _builder_version=”4.27.5″ _module_preset=”5138c454-be54-4233-bd3b-f8e6a8747976″ global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”73121f80-a3ef-4484-8763-c3f18e3c56d2″ z_index=”500″ global_colors_info=”{}”][et_pb_heading title=”De resultaten” _builder_version=”4.27.5″ _module_preset=”c33f07d9-41e0-421a-8799-5799df695cce” title_level=”h2″ title_font=”IBM Plex Sans Condensed|IBM Plex Sans Condensed_weight|||||||” title_text_color=”#005aaa” title_font_size=”43px” title_line_height=”1.2em” custom_margin=”||10px||false|false” title_font_size_tablet=”28px” title_font_size_phone=”20px” title_font_size_last_edited=”on|phone” locked=”off” global_colors_info=”{}”][\/et_pb_heading][et_pb_text quote_border_color=”#bfd6ea” _builder_version=”4.27.9″ _module_preset=”2c55a9c4-feed-423b-9edb-ae0b5b365cac” text_font=”IBM Plex Sans|IBM Plex Sans_weight|||||||” text_text_color=”#005aaa” text_font_size=”16px” text_line_height=”1.75em” link_font=”|IBM Plex Sans_weight|||||||” link_text_color=”#005aaa” quote_font=”IBM Plex Sans Condensed|IBM Plex Sans Condensed_weight|||||||” quote_text_color=”#005aaa” header_font=”IBM Plex Sans Condensed|IBM Plex Sans Condensed_weight|||||||” header_text_color=”#005aaa” header_font_size=”72px” header_line_height=”1.15em” header_2_font=”IBM Plex Sans Condensed|IBM Plex Sans Condensed_weight|||||||” header_2_text_color=”#005aaa” header_2_font_size=”50px” header_2_line_height=”1.2em” header_3_font=”IBM Plex Sans Condensed|IBM Plex Sans Condensed_weight|||||||” header_3_text_color=”#005aaa” header_3_font_size=”32px” header_3_line_height=”1.3em” header_4_font=”IBM Plex Sans Condensed|IBM Plex Sans Condensed_weight|||||||” header_4_text_color=”#005aaa” header_4_font_size=”24px” header_4_line_height=”1.4em” header_5_font=”IBM Plex Sans Condensed|IBM Plex Sans Condensed_weight|||||||” header_5_text_color=”#005aaa” header_5_font_size=”18px” header_5_line_height=”1.4em” header_6_font=”IBM Plex Sans Condensed|IBM Plex Sans Condensed_weight|||||||” header_6_text_color=”#005aaa” header_6_line_height=”1.5em” custom_margin=”||||false|false” text_font_size_tablet=”15px” text_font_size_phone=”14px” text_font_size_last_edited=”on|phone” header_font_size_tablet=”40px” header_font_size_phone=”24px” header_font_size_last_edited=”on|desktop” header_2_font_size_tablet=”28px” header_2_font_size_phone=”20px” header_2_font_size_last_edited=”on|phone” header_3_font_size_tablet=”22px” header_3_font_size_phone=”17px” header_3_font_size_last_edited=”on|phone” header_4_font_size_tablet=”18px” header_4_font_size_phone=”15px” header_4_font_size_last_edited=”on|tablet” header_5_font_size_tablet=”15px” header_5_font_size_phone=”14px” header_5_font_size_last_edited=”on|desktop” header_6_font_size_tablet=”13px” header_6_font_size_phone=”13px” header_6_font_size_last_edited=”on|desktop” locked=”off” global_colors_info=”{%22gcid-36fd78a7-34bc-404d-873c-dafa34efaae5%22:%91%22icon_color%22,%22icon_color%22%93}” body_font_size_tablet=”15px” body_font_size_phone=”14px” body_font_size_last_edited=”on|desktop”]<\/p>\n

De resultaten van de verschillende deelstudies brengen de uitdagingen en kansen voor de zorgpraktijk helder in kaart.<\/p>\n

Inzichten uit de deelstudies<\/h4>\n

In een landelijke Group Concept Mapping-studie onder 163 stakeholders uit zorg en welzijn zijn zeven centrale thema\u2019s voor goede palliatieve zorg bij EPA ge\u00efdentificeerd: communicatie over proactieve zorgplanning, ketensamenwerking, zelfzorg van professionals, pati\u00ebntgerichte zorg, deskundigheid, proactieve zorgplanning en organisatie en beleid. Communicatie en samenwerking werden hierbij het hoogst gewaardeerd. De uitkomsten zijn gepubliceerd in Palliative Medicine<\/i> (Briek et al., 2026).<\/p>\n

Binnen een cohortstudie onder 145 langdurig opgenomen pati\u00ebnten bij GGZ Centraal en GGZ Drenthe zijn de fysieke en psychiatrische gezondheid, kwetsbaarheid, palliatieve zorgbehoeften en de ontvangen proactieve zorgplanning onderzocht. Ook werden behandelwensen, behandelgrenzen, doodswensen en mantelzorgbelasting in kaart gebracht. Voorlopige analyses laten een duidelijke kloof zien tussen palliatieve zorgbehoeften en de daadwerkelijk ontvangen proactieve zorgplanning. Deze planning blijkt in de praktijk vaak beperkt te blijven tot reanimatiebeleid en uitvaartwensen, zonder brede aandacht voor de vier dimensies van palliatieve zorg (lichamelijk, psychisch, sociaal en existentieel).<\/p>\n

Een retrospectieve casusstudie naar het laatste levensjaar van een pati\u00ebnte met een bipolaire stoornis (gebaseerd op interviews met twee naasten en tien professionals) bracht het belang van pati\u00ebntgerichte zorg, deskundigheid, juridische kennis en het welzijn van naasten en professionals aan het licht. Het onderzoek maakte zichtbaar hoe opgestapelde onzekerheden kunnen leiden tot versnipperde zorg en vertraagde besluitvorming; het manuscript hiervoor is ingediend bij BMC Palliative Care<\/i>. Aanvullend zijn 23 pati\u00ebnten ge\u00efnterviewd over hun ervaringen en zorgbehoeften en worden momenteel ook naasten ge\u00efnterviewd.<\/p>\n

Maatschappelijke impact en landelijke inbedding<\/h4>\n

De opbrengsten van het project reiken verder dan wetenschappelijke publicaties. Het onderzoek stimuleert bewustwording en deskundigheidsbevordering binnen de GGZ. Inzichten worden gedeeld via onderwijs en nationale en internationale congressen in onder meer Maastricht, Leiden en Brisbane.<\/p>\n

Leden van de onderzoeksgroep dragen bovendien bij aan de landelijke richtlijn Palliatieve zorg voor mensen met EPA en\/of verslaving<\/i> en zijn actief binnen Stichting PsyPal+, een landelijk netwerk dat palliatieve zorg, psychiatrie en verslavingszorg verbindt. Uit het project zijn tevens nieuwe samenwerkingen ontstaan, waaronder een ZonMw-gesubsidieerd vervolgonderzoek naar de herkenning van zorgbehoeften.<\/p>\n

Praktische toepassing in de zorg<\/h4>\n

Een belangrijk praktisch leermoment is de inzet van de Surprise Question<\/i> (\u2018Zou het mij verbazen als deze pati\u00ebnt binnen twaalf maanden overlijdt?\u2019). Het stellen van deze eenvoudige vraag leidde tijdens het onderzoek al direct tot meer bewustwording en het inplannen van gesprekken over de laatste levensfase. Jaarlijkse toepassing biedt duidelijke kansen voor tijdige proactieve zorgplanning.<\/p>\n

Het proefschrift wordt naar verwachting in 2028 afgerond.<\/p>\n

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De gratis app is beschikbaar in 34 landen en in 11 talen en te downloaden via Google Playstore en Apple App Store.<\/p>\n

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Gratis te downloaden in de Google Playstore en App Store. Stress Autism Mate (SAM) junior helpt jongeren met autisme bij het omgaan met dagelijks ervaren stress. De app kan je helpen om meer inzicht te krijgen in stress en kan je tips geven hoe daarmee om te gaan. SAM junior kan je ook helpen om voor te bereiden op toekomstige stressvolle gebeurtenissen.<\/p>\n

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Meer informatie over de Stress Autism Mate app vind je op de website van SAM. Hier lees je alles over de werking van de app en kun je je aanmelden voor het SAM-panel.<\/p>\n

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Dit promotieonderzoek heeft mij professioneel \u00e9n persoonlijk veel geleerd.<\/span> Het betrekken van mensen met ernstige psychiatrische aandoeningen bij onderzoek bleek uitdagend.<\/span> Cognitieve beperkingen,<\/span> een korte spanningsboog en wisselende belastbaarheid vroegen om flexibiliteit.<\/span> Zichtbaarheid via intranet en een ‘sprekend bankje’,<\/span> meetweken en het enthousiasme van studenten en onderzoekers maakte dat we ons inclusiedoel ruimschoots overtroffen.<\/span> Dit maakt me trots op onze onderzoeksgroep.<\/span><\/span><\/p>\n

Wat mij verraste,<\/span> is hoe onbekend palliatieve zorg binnen de ggz soms nog is.<\/span> Regelmatig hoorden we:<\/span> <\/span>\u2018Palliatieve zorg? Dat bieden wij hier niet.\u2019<\/i> Terwijl na uitleg duidelijk werd dat palliatieve zorgbehoeften er wel degelijk zijn.<\/span> Onze eerste analyses wijzen erop dat ongeveer 30% van de onderzochte pati\u00ebnten een palliatieve zorgindicatie heeft.<\/span> Wat een kans om deze zorg beter te herkennen en tijdig te bieden!<\/span><\/p>\n

Ook de samenwerking is bijzonder.<\/span> Het congres in Brisbane met mijn copromotoren bracht wetenschappelijke inspiratie en liet ons elkaar anders leren kennen.<\/span> Promoveren als verpleegkundig specialist verbindt praktijk,<\/span> wetenschap en onderwijs.<\/span> Het is een uitdaging die ik collega’s van harte aanbeveel!<\/span><\/p>\n

Door het onderzoek sta ik bewuster stil bij de eindigheid van het leven en bij wat \u00e9cht belangrijk is.<\/span> Praat vandaag over morgen,<\/span> maar vergeet vooral niet om vandaag te l\u00e9ven!<\/span><\/p>\n

Jojanneke Briek
<\/b>Verpleegkundig specialist GGZ en promovenda bij GGZ Centraal<\/p>\n

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<\/strong><\/p>\n

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Hoewel meedoen niet meer mogelijk is, nodigen we u uit om onze andere projecten te verkennen. Ontdek hoe wij ons inzetten voor de langdurige zorg en laat u inspireren door de impact die we samen kunnen maken.<\/p>\n

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Mensen met ernstige psychiatrische aandoeningen (EPA) overlijden gemiddeld aanzienlijk jonger dan de algemene bevolking. Lichamelijke aandoeningen, psychiatrische problematiek, stigma en versnipperde zorg bemoeilijken het tijdig herkennen van palliatieve zorgbehoeften. Hierdoor bestaat het risico dat passende ondersteuning te laat of onvoldoende wordt geboden. Palliatieve zorg is gericht op kwaliteit van leven, kan jarenlang nodig zijn en is een fundamenteel recht voor iedereen, dus ook voor mensen met EPA. Dit promotieonderzoek heeft als doel bij te dragen aan tijdige, passende en persoonsgerichte palliatieve zorg voor mensen met EPA en hun naasten binnen de Nederlandse GGZ.<\/p>\n","protected":false},"author":1,"featured_media":282006,"comment_status":"open","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"project_category":[18,22],"project_tag":[],"class_list":["post-282003","project","type-project","status-publish","has-post-thumbnail","hentry","project_category-ggz","project_category-promotieonderzoek"],"acf":[],"_links":{"self":[{"href":"https:\/\/zorgondersteuningsfonds.nl\/wordpress\/wp-json\/wp\/v2\/project\/282003","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/zorgondersteuningsfonds.nl\/wordpress\/wp-json\/wp\/v2\/project"}],"about":[{"href":"https:\/\/zorgondersteuningsfonds.nl\/wordpress\/wp-json\/wp\/v2\/types\/project"}],"author":[{"embeddable":true,"href":"https:\/\/zorgondersteuningsfonds.nl\/wordpress\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/zorgondersteuningsfonds.nl\/wordpress\/wp-json\/wp\/v2\/comments?post=282003"}],"version-history":[{"count":8,"href":"https:\/\/zorgondersteuningsfonds.nl\/wordpress\/wp-json\/wp\/v2\/project\/282003\/revisions"}],"predecessor-version":[{"id":282028,"href":"https:\/\/zorgondersteuningsfonds.nl\/wordpress\/wp-json\/wp\/v2\/project\/282003\/revisions\/282028"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/zorgondersteuningsfonds.nl\/wordpress\/wp-json\/wp\/v2\/media\/282006"}],"wp:attachment":[{"href":"https:\/\/zorgondersteuningsfonds.nl\/wordpress\/wp-json\/wp\/v2\/media?parent=282003"}],"wp:term":[{"taxonomy":"project_category","embeddable":true,"href":"https:\/\/zorgondersteuningsfonds.nl\/wordpress\/wp-json\/wp\/v2\/project_category?post=282003"},{"taxonomy":"project_tag","embeddable":true,"href":"https:\/\/zorgondersteuningsfonds.nl\/wordpress\/wp-json\/wp\/v2\/project_tag?post=282003"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}