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Perspectives of LGBTQIA+ people on palliative care in Portugal
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As pessoas da comunidade LGBTQIA+ integram uma população especialmente vulnerável à discriminação, tanto no quotidiano, como nos serviços de saúde. Consequentemente, esta população apresenta maior taxa de incidência de doença. Por esta razão, a comunidade LGBTQIA+ possui necessidades únicas de cuidados de saúde, especialmente nos Cuidados Paliativos, em que os utentes se apresentam numa fase de vida especialmente vulnerável. No entanto, ainda existe uma lacuna na literatura sobre as necessidades e o conhecimento desta comunidade sobre serviços de Cuidados Paliativos, tanto a nível internacional, como nacional.
O objetivo deste estudo foi avaliar o conhecimento e as necessidades específicas dos doentes LGBTQIA+ em Cuidados Paliativos em Portugal.
Entre novembro de 2022 e março de 2023, foi distribuído um inquérito por adultos LGBTQIA+ residentes em Portugal. Foi realizada uma análise temática de forma a identificar barreiras e facilitadores percecionados, e categorizar esses fatores no modelo socioecológico adaptado da saúde.
Um total de 55 participantes responderam ao inquérito, incluindo pessoas com variados níveis de experiência em cuidados paliativos. As barreiras identificadas foram cuidadores homofóbicos, falta de conhecimento dos profissionais sobre assuntos LGBTQIA+, medo e vulnerabilidade do doente, diferentes prioridades na gestão da saúde, falta de inclusão do parceiro na tomada de decisão e difícil acesso a cuidados de saúde. Os facilitadores identificados foram maior inclusão e respeito, integração dos doentes e dos seus parceiros ou família escolhida, formação adequada dos profissionais, apoio psicológico aos doentes LGBTQIA+, composição igualitária da equipa de trabalho, maior distribuição de informação sobre os cuidados paliativos, maior envolvimento da comunidade LGBTQIA+ e valores morais inclusivos na sociedade.
A maioria dos participantes com experiência em cuidados paliativos relatou interações positivas, no entanto, identificou-se que doentes LGBTQIA+ necessitam de
serviços especializados com maior conhecimento e apoio. As perceções recolhidas neste estudo podem apoiar o desenvolvimento de políticas e serviços, de modo a melhorar ainda mais os serviços de cuidados paliativos em Portugal.
Introduction: The LGBTQIA+ community is an especially vulnerable population to discrimination, both in day-to-day, and in healthcare. As a consequence, it has been shown that this population presents a greater incidence rate of disease. For this reason, the LGBTQIA+ community may have unique needs in healthcare, especially in Palliative Care, where patients are in an especially vulnerable time of their lives. However, there is still a gap in scientific literature about their needs and knowledge on palliative care services, both at an international and national level. Objective: This study aimed to evaluate the knowledge and particular needs that LGBTQIA+ patients had in Palliative Care in Portugal. Method: A self-reported online survey was distributed from November 2022 to March 2023, amongst LGBTQIA+ adults residing in Portugal. Thematic analysis was conducted in order to identify perceived barriers and enablers and situate these factors in the adapted socio-ecological framework of health. Results: A total of 55 participants responded to the survey, including people with varied levels of experience in palliative care. The identified barriers were homophobic caregivers, lack of knowledge on LGBTQIA+ matters amongst professionals, patient fear and vulnerability, different priorities in management and care, lack of partner inclusivity in decision-making and lack of access to healthcare. Identified enablers were greater inclusivity and respect, integration of patients and their partners or chosen family in management and care, adequate training of professionals, psychological support for LGBTQIA+ patients, equal workforce composition, greater distribution of information on palliative care services, larger engagement with the community, and, finally, inclusive moral values within society. Conclusions: Most of the participants who had experienced palliative care recounted positive interactions, however, it was identified that LGBTQIA+ patients require specialized care and access to more inclusive services. The insights collected in this study can ultimately support ongoing policy and service development to further improve palliative care services in Portugal.
Introduction: The LGBTQIA+ community is an especially vulnerable population to discrimination, both in day-to-day, and in healthcare. As a consequence, it has been shown that this population presents a greater incidence rate of disease. For this reason, the LGBTQIA+ community may have unique needs in healthcare, especially in Palliative Care, where patients are in an especially vulnerable time of their lives. However, there is still a gap in scientific literature about their needs and knowledge on palliative care services, both at an international and national level. Objective: This study aimed to evaluate the knowledge and particular needs that LGBTQIA+ patients had in Palliative Care in Portugal. Method: A self-reported online survey was distributed from November 2022 to March 2023, amongst LGBTQIA+ adults residing in Portugal. Thematic analysis was conducted in order to identify perceived barriers and enablers and situate these factors in the adapted socio-ecological framework of health. Results: A total of 55 participants responded to the survey, including people with varied levels of experience in palliative care. The identified barriers were homophobic caregivers, lack of knowledge on LGBTQIA+ matters amongst professionals, patient fear and vulnerability, different priorities in management and care, lack of partner inclusivity in decision-making and lack of access to healthcare. Identified enablers were greater inclusivity and respect, integration of patients and their partners or chosen family in management and care, adequate training of professionals, psychological support for LGBTQIA+ patients, equal workforce composition, greater distribution of information on palliative care services, larger engagement with the community, and, finally, inclusive moral values within society. Conclusions: Most of the participants who had experienced palliative care recounted positive interactions, however, it was identified that LGBTQIA+ patients require specialized care and access to more inclusive services. The insights collected in this study can ultimately support ongoing policy and service development to further improve palliative care services in Portugal.
Descrição
Trabalho Final do Curso de Mestrado Integrado em Medicina, Faculdade de Medicina, Universidade de Lisboa, 2023
Palavras-chave
Fim de vida Cuidados paliativos Necessidades nos cuidados de saúde Estudo qualitativo Pessoas LGBQTIA+