Descrizione del progetto
Migliori classificazioni dei luoghi in cui si muore
Il rispetto delle preferenze personali in merito al luogo dove morire è importante. Il primo passo in tal senso è costituito dalla classificazione di tali luoghi (tra cui case e ospedali) in un modo che risulti significativo per le persone. Alla luce di tali premesse, il progetto EOLinPLACE, finanziato dall’UE, creerà una solida base per il primo strumento di classificazione internazionale volto a mappare i luoghi prescelti per morire, nonché quelli attualmente esistenti. Il progetto condurrà uno studio caratterizzato da metodi misti in quattro paesi abbracciando la variazione odierna in tal ambito allo scopo di esplorare le sfumature e le complessità nei percorsi compiuti al termine della vita delle persone. I risultati forniranno nuove informazioni sul modo in cui assistere gli individui in fin di vita.
Obiettivo
All humans die, >60% from a chronic disease. Whenever possible, this should happen where that individual feels it is the right place to be, so they feel empowered and safe. We know that most would prefer dying at home but many die in hospital. To help achieve preferences we must dig deeper. Until now, science has failed to capture the dynamics and diversity of preferences and places where people are cared for at the end of life. Current classifications of dying places are incomplete and inconsistent. I am driven by the vision of reforming the way dying places are classified and understood, refining and shifting the focus from the end-point (place of death) to the pathway that precedes it.
I want to develop a strong foundation for a pioneering international classification tool that maps preferred and actual places towards death grounded on what they mean for individuals (beyond a purely physical or medical view). To achieve this I combine classic methods of developing health classifications with a bottom-up participatory research approach, working with patient and family representatives. First, I conduct a novel mixed-methods study (ethnography followed by longitudinal study) in 4 countries covering existing target variation, to explore nuances and commonalities in the experiences of patients with life-threatening conditions and their families. Based on this, I build a contemporary classification and assess its content validity in focus groups with patients, carers and other stakeholders. I then test it in varied settings to examine construct validity, reliability, responsiveness, data quality and interpretability. All data are integrated to deepen understanding of different end of life pathways in caring environments and what influences them.
Prompted by my discoveries on preferences and concern with unfit classifications for a fast-growing need in a changed social world with limited care resources, my research will open new directions in how to care for the dying.
Parole chiave
Programma(i)
Argomento(i)
Meccanismo di finanziamento
ERC-STG - Starting GrantIstituzione ospitante
3004-531 Coimbra
Portogallo