oai:HAL:hal-03476225v1
HAL CCSD
ciencias: ciencias de la vida
2021
7/12/2023
Objective : Parkinson’s Disease affects the PcP’s and caregiver’s quality of life in every-day life.
A global multi-professional, person- centered accompaniment is essential.
An ambulatory multi-professional structure to welcome PcP punctually, close to their homes, seems pertinent.
That “House of Parkinson” could offer a bio-psycho-social accompaniment to improve the daily quality of life and to avoid the caregivers’ burn-out.
A field diagnosis has been conducted to assess the actors’ interest for such a structure.
Methods : A mixed study has been conducted, using the nominal group method via Gotomeeting® among 9 PcP and 6 caregivers about the question “What are your expectations towards such a structure?”
Based on these results, a quantitative questionnaire was conceived, using the Lime Survey® software, and sent out by e-mail or SMS to 200 actors of the healthcare pathway.Results : The nominal group has generated 64 propositions, gathered into 15 themes, of which 5 have been retained.
40 healthcare professionals have answered the survey.
A specific training was lacking for 54,5% among them, 82,1% wanted to be trained by the expert center, and 62,5% were ready to intervene in such a structure the Friday morning, for two hours.Conclusion : The participants were globally interested by the “The House of Parkinson”.
The primary expectation of PcP and caregivers was an intervention of the healthcare actors.
To experiment the implementation in pre-existent structures like houses of caregivers could enquire about efficacity and efficiency of that offer on the long-term.Key-Words : Parkinson’s disease, multi-professional structure, person-centeredness, community health, ambulatory, field diagnosis ; (MP) impacte le quotidien et la qualité de vie des personnes avec une maladie de Parkinson (PcP) et de leurs aidants.
Un accompagnement global pluriprofessionnel, centré sur la PcP, est indispensable.
Une structure ambulatoire pluriprofessionnelle d'accueil ponctuel des PcP et aidants, à proximité du domicile, semble pertinente.
Cette « Maison du Parkinson » proposera un accompagnement bio-psycho-social pour améliorer la qualité de vie au quotidien et d'éviter l'épuisement des aidants.
Pour étudier l'intérêt des acteurs locaux pour cette structure, un diagnostic de territoire a été mené.
Méthodes : Une étude mixte a été réalisée par groupe nominal via Gotomeeting ® avec 9 PcP et 6 aidants répondant à la question « qu'attendez-vous de cette structure ? »
A partir de ces résultats, un questionnaire quantitatif conçu sur le logiciel Lime Survey ® a été adressé par mail ou sms aux 200 acteurs du parcours de soins.
Résultats : Le groupe nominal a généré 64 propositions, regroupées en 15 thèmes, dont 5 ont été retenus.
40 acteurs de santé ont répondu.
Une formation spécialisée manquait à 54,5%, 82,1% souhaitaient se former dans le centre expert, 62,5% seraient prêt à intervenir dans cette structure, le vendredi matin, pour deux heures.
Conclusion : Les participants sont intéressés par la « Maison du Parkinson ».
L'attente majoritaire des PcP et aidants, est l'intervention des acteurs de santé.
Expérimenter l'implémentation dans des structures pré existantes comme les maisons des aidants pourrait renseigner sur l'efficacité et l'efficience de cette offre au long terme.
2 Mots-Clefs : Maladie de Parkinson, structure pluri-professionnelle, approche centrée personne, santé communautaire, ambulatoire, diagnostic de terrain Summary Objective : Parkinson's Disease affects the PcP's and caregiver's quality of life in everyday life.
A global multi-professional, person-centered accompaniment is essential.
An ambulatory multiprofessional structure to welcome PcP punctually, close to their homes, seems pertinent.
That "House of Parkinson" could offer a bio-psycho-social accompaniment to improve the daily quality of life and to avoid the caregivers' burnout.
A field diagnosis has been conducted to assess the actors' interest for such a structure.
Methods : A mixed study has been conducted, using the nominal group method via Gotomeeting ® among 9 PcP and 6 caregivers about the question "What are your expectations towards such a structure?"
Based on these results, a quantitative questionnaire was conceived, using the Lime Survey ® software, and sent out by e-mail or SMS to 200 actors of the healthcare pathway.
Results : The nominal group has generated 64 propositions, gathered into 15 themes, of which 5 have been retained.
40 healthcare professionals have answered the survey.
A specific training was lacking for 54,5% among them, 82,1% wanted to be trained by the expert center, and 62,5% were ready to intervene in such a structure the Friday morning, for two hours.
Conclusion : The participants were globally interested by the "The House of Parkinson".
The primary expectation of PcP and caregivers was an intervention of the healthcare actors.
To experiment the implementation in pre-existent structures like houses of caregivers could enquire about efficacity and efficiency of that offer on the long-term.
Moussati, Hayat, El,Messaadi, Nassir,Defebvre, Luc,Devos, David,Messaadi, Wassil,Tilly, Anita,Bayen, Sabine, 2021, "Parkinsonhaus": Reflexionen zum Konzept im Douaisis.;Reflexion about the conception of a "House of Parkinson" in the Douaisis territory.;Réflexion autour de la conception d'une maison du Parkinson dans le Douaisis., HAL CCSD