Update 2: De lekensamenvatting

24 augustus 2020

Zoals beloofd, houd ik jullie graag op de hoogte van het COPIED onderzoek dat in oktober 2020 van start gaat. Deze keer een korte update: De Parkinson Vereniging wilde graag een lekensamenvatting ontvangen. Hieronder vind je de versie zoals we die ingestuurd hebben.

Lekensamenvatting COPIED studie

Een zelfhulptool vol omwegen bij obstakels in het denken

Een aanzienlijk deel van mensen met parkinson heeft last van obstakels in het denken, vaak al voor de diagnose. Denk daarbij aan problemen met aandacht en concentratie, geheugen, snelheid van denken en doen, overzicht houden en plannen, prikkelverwerking en het uitvoeren van (dubbel)taken. Er zijn nog geen wetenschappelijk onderbouwde hulpmiddelen om dit soort obstakels te omzeilen.

In de tussentijd zijn mensen met parkinson ontzettend creatief in het vinden van omwegen waardoor ze hun dagelijkse activiteiten toch uit kunnen voeren. Het zijn deze omwegen die de onderzoekers van de COPIED*-studie als het ware gaan kopiëren: Ze gaan tips en trucs ophalen, toetsen, bundelen, omtoveren in een leerbare vorm en vervolgens weer uitdelen. Copy-paste.

Stapsgewijs

De zelfhulptool moet over twee jaar in gebruik zijn. Om daar te komen, gaan de onderzoekers stapsgewijs aan de slag: Eerst maken zij een indeling van de obstakels en omwegen die al zijn verzameld tijdens de training ‘Parkinson? Houd je aandacht erbij!’ van de Parkinson Vereniging. Dat doen ze met een wetenschappelijk getoetst model voor informatieverwerking. Vervolgens scherpt het onderzoeksteam de aard van de obstakels en omwegen aan met een aantal groepsbijeenkomsten en een enquête. Dan volgt de vertaalslag naar een zelfhulptool en gaat de doelgroep er ook echt mee aan de slag. Nadat de onderzoekers hebben gevraagd wat er goed en minder goed werkt, volgt een verbeterslag. Tot slot zetten ze de uiteindelijke zelfhulptool zo breed mogelijk uit onder patiënten en hun omgeving, die met de tool de tips van medepatiënten en hun naasten kunnen gebruiken.

Voor en door mensen met parkinson

Een bijzonder detail van dit onderzoek is dat deze wordt geleid door parkinsonpatiënten. De vraag is ontstaan vanuit Marina Noordegraaf en Edwin Barentsen, beiden patiëntonderzoeker bij de Parkinson Vereniging. Zij ervaren hun obstakels in het denken als een grotere belemmering in hun dagelijks functioneren dan de fysieke problemen. Vanuit de behoefte het onderzoek methodisch en wetenschappelijk op te pakken hebben zij het team weten aan te vullen met dr. Ingrid Sturkenboom, expert in ergotherapie bij de ziekte van Parkinson, dr. Esther Steultjens, expert in dagelijks handelen, cognitie en cognitieve strategietraining en een kundige klankbordgroep met een mix van patiënten en onderzoekers.

Het onderzoek is te volgen op https://www.copiedstudie.nl. Voor vragen of input kun je contact opnemen met Marina Noordegraaf via marina@copiedstudie.nl

* COPIED is een acronym voor “Cognitieve obstakels & Omwegen bij Parkinson: Informatieverwerkingstips voor Elke Dag”.

Update 2: De lekensamenvatting

6 gedachten over “Update 2: De lekensamenvatting

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