Project Descrıptıon

According to the Portuguese Association of Palliative Care, palliative care is a way of providing healthcare centered on the patient and their family. It is provided by a multidisciplinary team composed of doctors, nurses, psychologists, social workers, and other professionals. The goal is to address global suffering, support communication with the patient, their family, and other professionals. In a study conducted by the Portuguese Catholic University in 2019, titled "Coverage and Characterization of Palliative Care Teams and Professionals," 53% of healthcare professionals are nurses, 23.4% are doctors, 8.1% are social workers, 7.6% are psychologists, 2.6% are physiotherapists, 1.9% are nutritionists, 1% are spiritual assistants, 0.4% are speech therapists, and 0.4% are occupational therapists.

Nothing in this report refers to the training these professionals have in working with people with disabilities, nor specifically with deaf people and/or those with hearing loss.The law No. 52/2012, refers that all patiens should be adressed accordingly with their special needs, but despite the existence of very strict legislation concerning palliative care in general, the implementation of this law in practice has not been a reality, especially in the case of deaf people. The same can be said for the other countries in the European Union. In the study "Palliative Care in the European Union (2008)," there is an excellent description of the palliative care situation in the European Union, but once again, nothing is mentioned regarding citizens with disabilities, and concerning deaf people. In an exploratory study we conducted in 2024 at the Portuguese Association of the Deaf, where we interviewed 15 senior deaf individuals, 96.3% of the respondents reported that they were unaware of what palliative care is, and 3.7% stated that they tried to access palliative care services through the National Health Service (SNS) and found that professionals were not prepared in terms of communication to work with deaf individuals. As part of the same study, we interviewed 8 healthcare professionals from the SNS, who reported feeling unprepared to intervene with deaf people and/or those with hearing loss. The situation in the partner countries of this project (Turkey and Italy) is very similar to the situation reported in Portugal. Therefore, it seems essential and urgent to create a response in terms of training and information on palliative care for deaf people and/or those with hearing loss, as there is currently no provision at this level within the European Union. This would allow deaf people to receive information on what palliative care is, how to access such care, and promote training in sign language at levels A1, A2, and B1, as well as communication systems for people with hearing loss for healthcare professionals working in palliative care. This response will promote greater inclusion of deaf people in healthcare, specifically in palliative care.