Changing landscapes: helping caregivers, an experience from Tuscany.

Abstract

Introduction: While multi-professional care interventions are guaranteed through an integrated care model, sometimes there is no possibility to support full-time assisting patients’ families in terms of allowing them the time for their life and home management activities. The role of the caregiver is essential throughout the day to address the patient’s needs: in this way, an appropriate level of well-being can be assured to who is undergoing the last stages of illness. The growing need for forms of support caregivers who assist those patients at home, generated a reflection by the family and community nurses operating in the territory of Pistoia, Tuscany. 
 Targeted population and stakeholders: Caregivers and families that care for under 63 patients in the end-stages of disease. 
 Timeline: The project started in 2022 and will not be interrupted. 
 Highlights: The patient may be untreatable, but never incurable: the healthcare professionals take care of the person and until the end. This resolution gave rise to the idea of a project called "Quick Assistance”, aimed at expanding the available services at the local level. It provides a package of 20 hours of a healthcare assistant presence at home to be used by the families needing them and provided by private firms. The activation of the service is guaranteed by the professionals’ network that revolves around the patient (Family and Community Nurses, GPs), that can identify a manifest, latent or unexpressed need and provide the appropriate response. The project is supported by the Società della Salute Pistoiese, a public entity constituted by Municipalities and the Local Health Autority for the associated exercise of territorial, socio-sanitary, and social activities. Where needs arise, care must be available to the patient and to the caregivers. This is the way in which the Tuscan NHS engages with the population, that is implementing the concept of integrated care at the microlevel, with the goal of enabling the extended concept of “patient” (patients and caregivers) to be at the centre of the care coordination. In other words, the system is adapting to the real needs expressed by the population, filling “unintentional gaps” that derive from an ongoing population knowledge process: through a participatory approach, solutions are shaped. This was the case of a 63-year-old patient in the last stages of illness that couldn’t benefit from the services offered by the system being him under 65, age above which the NHS provides for a very wide range of services, designed for elderly and fragile people. 
 Conclusions: The project aims to provide support to families in the surveillance and assistance of the patient. “Quick Assistance” strengthens the implementation of care provision at home and is effective in reducing the caregiver burden to prevent a more serious condition, as the caregiver’s burnout. The latter becomes more frequent in modern societies: that is due to changing cultural and social characteristics that have delegated the function of proximity and presence to external subjects.