14 februari 2022
Update 26: De zelfhulptool – het prototype
Het prototype-ei is gelegd. In de foto hierboven zien jullie een gedrukt prototype van het boek vol ‘Ommetjes door het parkinsonbrein’ dat uit de COPIED onderzoeksdata is ontsproten. Het heeft de grootte van een pizzadoos. Dit boek is in digitale versie van feedback voorzien door de leden van de klankbordgroep en een aantal mensen met parkinson.
Ook drukte ik vijf ‘echte’ exemplaren af. Vier gedrukte exemplaren vonden hun weg naar mensen met parkinson en naasten. In dit prototype mochten ze krassen, schrijven, tekenen en opmerkingen maken. Ook lag er een aantal weken een exemplaar op mijn eigen keukentafel. Wat ik merkte was dat mensen aan de hand van het boek gesprekken met elkaar aangingen. Ik zag ze met hun hand de lijntjes volgen. Ik kon de beoogde werking bestuderen.
Jezelf niet over het hoofd zien
Er kwam feedback op logica, opmaak, punten en komma’s. Daarnaast kreeg ik de vraag waarom mijn naam niet op de kaft stond. En dat ik beter zou mogen laten zien dat dit een bijzonder project is, door patiënten geleid. Ik heb daarvan geleerd dat als je wilt dat mensen met parkinson niet over het hoofd worden gezien, je jezelf ook niet kleiner moet maken dan nodig. Prachtige les. 2
Mooi voorbeeld van "nothing for us without us" (= mensen die met Parkinson leven)
Onderzoeksdeelnemer COPIED

De feedback die me tot tranen toe roerde was van een mens met parkinson. Ze vertelde dat ze door het boek een goed gesprek had gehad met haar vriend over haar moeite met meerdere dingen tegelijk doen. Dat het zo fijn was dat het er zo zwart-op-wit stond zoals zij het ervaart.
Daar is het mij allemaal om begonnen, lieve mensen!
De volgende stap
Na alle feedback, geheel ongestructureerd verzameld, heb ik besloten dat het goed is zo. Ik ga niet ook nog semi-gestructureerde feedback ophalen bij nog eens 12 mensen met parkinson en hun naasten. Feedback krijgen zonder dat je hebt gezegd waar mensen op moeten letten, is namelijk super waardevol. Het komt het dichtst bij de echte ervaring als het boek er eenmaal is. Thuis gaan mensen tenslotte ook aan de slag met het boek zoals het is, zonder dat hen verteld wordt waar ze op moeten letten.
In plaats van nog een verbeterslag op kleine schaal ga ik alle onderzoeksdeelnemers een exemplaar toesturen. Mij gaat het nu niet meer om punten en komma’s. Het gaat mij er om de werking in de praktijk te testen. Hebben mensen met parkinson en hun naasten iets aan dit boek? Wat levert het hen op? Om dat echt uit te pluizen, kan ik dat het beste checken bij een hele grote groep mensen.
Momenteel ben ik de feedback aan het verwerken. Het komt erop neer dat ik de opbouw beter toelicht, de omwegkaarten minder druk maak en het geheel een persoonlijk tintje geef. Er komt een hoofdstukje ‘Er was eens een idee’ waar de oorsprong van het boek omschreven staat.
Ik verwacht de onderzoeksdeelnemers die hebben aangegeven een exemplaar van de tool te willen ontvangen, binnen twee maanden een pizzadoos gevuld met een boek vol ‘Ommetjes door het Parkinsonbrein’ te mogen toesturen. En andere geïnteresseerden kunnen het tegen kostprijs bestellen.
Wordt vervolgd.
Marina
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Sleep was better, intercourse drive was higher and total power was better.
My face blew up like Peter griffin, sex drive zapped and exercises felt like shit.
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References:
What is steroids classified as (e-hp.info)