Background: Neurodegenerative diseases are characterised by a slow decline that makes it difficult to determine when the disease enters its terminal phase. Patients require specialist care to deal with symptoms such as pain, fatigue, decline in motor and cognitive functions, rigidity and spasticity. Support for family members is essential, given the emotional and physical burden of long-term care. Management must be personalised and adapted to the specific conditions of the disease and family context. Only the multidisciplinary approach which integrates basic and specialist palliative care with neurological care and rehabilitation services should best meet the needs of patients and families, ensuring optimal intervention times and more appropriate use of resources. Law No. 219 of 2017 recognised the patient's right to treatment that respects dignity, self-determination and informed consent, which also implies the active involvement of the physiotherapist. Aim of the study: This thesis aims to investigate the role of the physiotherapist within the multidisciplinary palliative care team and to demonstrate the effectiveness of rehabilitation intervention, particularly in the terminal stage. It also aims to explore the level of knowledge of the subjects surveyed regarding Law No. 219 of 2017 and the possibility of establishing the care plan in advance together with the care team. Materials and methods: A qualitative study was conducted using a semi-structured interview addressed to a number of in-patients at the “Centro di Riferimento per Gravi Disabilità (C.R.G.D.) Casa Breda”, located in the municipality of Padua, a reference point for the care of terminally ill patients suffering from neurodegenerative pathologies. The participants in the study were selected by the multidisciplinary team of the facility on the basis of their communication skills, awareness of their illness, prior knowledge of Advance Care Planning (ACP) and willingness to participate in the study. The interview made it possible to highlight the patients' experiences related to their pathology, expectations and the impact of the palliative team's intervention on the lives of the patients and their beloved. At the same time, the degree of knowledge of Law No. 219 of 2017 was assessed. Results: The results of the study show that physiotherapy in palliative care for patients with neurodegenerative diseases had a positive impact on the patients' quality of life and emotional well-being. Participants described physiotherapy as essential for maintaining an appropriate degree of autonomy and reducing dependency on caregivers, especially through the use of aids such as electric wheelchairs. However, patients have highlighted the need to increase the frequency of sessions, as one weekly session is perceived as insufficient to ensure adequate intervention. Conclusions: The thesis highlights the importance of an integrated and multidisciplinary approach in palliative care, with a particular focus on the contribution of the physiotherapist and emphasises the need to improve resources and knowledge to ensure continuous and dignified care, adapted to the complex and evolving needs of patients and their families. The lack of information on ACPs suggests the need for greater awareness and further investigation on the subject.
Background: Le patologie neurodegenerative sono caratterizzate da un lento declino che rende difficile stabilire quando la malattia entra in fase terminale. I malati necessitano di cure specialistiche per affrontare sintomi come il dolore, la fatica, il declino delle funzioni motorie e cognitive, la rigidità e la spasticità. Il sostegno ai familiari è essenziale, dato il carico emotivo e fisico derivante dall'assistenza a lungo termine. La gestione deve essere personalizzata e adattata alle condizioni specifiche della malattia e del contesto familiare. Solo l’approccio multidisciplinare che integra le cure palliative di base e specialistiche con le cure neurologiche e i servizi di riabilitazione dovrebbe soddisfare al meglio le esigenze di pazienti e famiglie, assicurando tempistiche di intervento ottimali e un uso più appropriato delle risorse. La Legge n.219 del 2017 ha riconosciuto il diritto del paziente a un trattamento che rispetti la dignità, l'autodeterminazione e il consenso informato, il che implica anche il coinvolgimento attivo del fisioterapista. Obiettivo dello studio: Il presente lavoro di tesi si propone di indagare il ruolo del fisioterapista all’interno dell’equipe multidisciplinare delle cure palliative e di dimostrare l’efficacia dell’intervento riabilitativo in particolar modo nella fase terminale. Inoltre ha l’obiettivo di esplorare il livello di conoscenza dei soggetti presi in esame riguardo alla Legge n.219 del 2017 e alla possibilità di stabilire anticipatamente il piano di cure insieme all’equipe assistenziale. Materiali e metodi: È stato condotto uno studio qualitativo attraverso l’utilizzo di un’intervista semistrutturata rivolta ad alcuni ospiti ricoverati presso il “Centro di Riferimento per Gravi Disabilità (C.R.G.D.) Casa Breda”, situato nel comune di Padova, punto di riferimento per la cura dei malati terminali affetti da patologie neurodegenerative. I partecipanti allo studio sono stati selezionati dall’equipe multidisciplinare della struttura in base alla capacità comunicativa, alla consapevolezza della propria malattia, alla conoscenza preliminare sulla pianificazione condivisa delle cure (PCC) e alla disponibilità di partecipare allo studio. L’intervista ha consentito di evidenziare il vissuto dei pazienti legato alla patologia, alle aspettative e all’impatto dell’intervento dell’equipe palliativa sulla vita degli assistiti e dei loro cari. Al contempo si è valutato il grado di conoscenza della Legge n.219 del 2017. Risultati: I risultati dello studio evidenziano come la fisioterapia nelle cure palliative per pazienti con patologie neurodegenerative abbia avuto un impatto positivo sulla qualità di vita e sul benessere emotivo dei pazienti. I partecipanti hanno descritto la fisioterapia come fondamentale per mantenere un adeguato grado di autonomia e per ridurre il senso di dipendenza dai caregiver, specialmente grazie all'uso di ausili come la carrozzina elettrica. Tuttavia i pazienti hanno evidenziato la necessità di aumentare la frequenza delle sedute, poiché una sessione settimanale viene percepita come insufficiente per garantire un intervento adeguato. Conclusioni: La tesi evidenzia l'importanza di un approccio integrato e multidisciplinare nelle cure palliative, con un focus particolare sul contributo del fisioterapista, e sottolinea la necessità di migliorare le risorse e le conoscenze per garantire un'assistenza continua e dignitosa, adeguata alle esigenze complesse e in evoluzione dei pazienti e dei loro familiari. La mancanza di informazione riguardo alla PCC suggerisce la necessità di maggiore sensibilizzazione e l’esigenza di ulteriori approfondimenti riguardo l’argomento.
Il ruolo del fisioterapista nelle cure palliative dei pazienti con grave patologia neurodegenerativa.
GIACALONE, ANDREA
2023/2024
Abstract
Background: Neurodegenerative diseases are characterised by a slow decline that makes it difficult to determine when the disease enters its terminal phase. Patients require specialist care to deal with symptoms such as pain, fatigue, decline in motor and cognitive functions, rigidity and spasticity. Support for family members is essential, given the emotional and physical burden of long-term care. Management must be personalised and adapted to the specific conditions of the disease and family context. Only the multidisciplinary approach which integrates basic and specialist palliative care with neurological care and rehabilitation services should best meet the needs of patients and families, ensuring optimal intervention times and more appropriate use of resources. Law No. 219 of 2017 recognised the patient's right to treatment that respects dignity, self-determination and informed consent, which also implies the active involvement of the physiotherapist. Aim of the study: This thesis aims to investigate the role of the physiotherapist within the multidisciplinary palliative care team and to demonstrate the effectiveness of rehabilitation intervention, particularly in the terminal stage. It also aims to explore the level of knowledge of the subjects surveyed regarding Law No. 219 of 2017 and the possibility of establishing the care plan in advance together with the care team. Materials and methods: A qualitative study was conducted using a semi-structured interview addressed to a number of in-patients at the “Centro di Riferimento per Gravi Disabilità (C.R.G.D.) Casa Breda”, located in the municipality of Padua, a reference point for the care of terminally ill patients suffering from neurodegenerative pathologies. The participants in the study were selected by the multidisciplinary team of the facility on the basis of their communication skills, awareness of their illness, prior knowledge of Advance Care Planning (ACP) and willingness to participate in the study. The interview made it possible to highlight the patients' experiences related to their pathology, expectations and the impact of the palliative team's intervention on the lives of the patients and their beloved. At the same time, the degree of knowledge of Law No. 219 of 2017 was assessed. Results: The results of the study show that physiotherapy in palliative care for patients with neurodegenerative diseases had a positive impact on the patients' quality of life and emotional well-being. Participants described physiotherapy as essential for maintaining an appropriate degree of autonomy and reducing dependency on caregivers, especially through the use of aids such as electric wheelchairs. However, patients have highlighted the need to increase the frequency of sessions, as one weekly session is perceived as insufficient to ensure adequate intervention. Conclusions: The thesis highlights the importance of an integrated and multidisciplinary approach in palliative care, with a particular focus on the contribution of the physiotherapist and emphasises the need to improve resources and knowledge to ensure continuous and dignified care, adapted to the complex and evolving needs of patients and their families. The lack of information on ACPs suggests the need for greater awareness and further investigation on the subject.File | Dimensione | Formato | |
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https://hdl.handle.net/20.500.12608/75770