| Name: | Description: | Size: | Format: | |
|---|---|---|---|---|
| 3.99 MB | Adobe PDF |
Authors
Advisor(s)
Abstract(s)
Introdução: A demência (DEM) é uma síndrome irreversível causada pela
neurodegeneração progressiva, caracterizada pela perda da memória, da linguagem e
da capacidade para realizar AVD. É uma doença desafiante não só pelos problemas que
acarreta para o doente/família como também para os profissionais de saúde. Como uma
resposta possível a esta surgem os cuidados paliativos (CP) com o intuito de adequar e
priorizar cuidados, promovendo a melhor qualidade de vida possível e respeito pela
dignidade humana.
Objetivo: Identificar fatores que condicionam a acessibilidade aos CP dos doentes com
DEM na perspetiva de Neurologistas e Paliativistas.
Método: Estudo descritivo, qualitativo com recurso a análise temática. Amostragem por
bola de neve, constituída por 6 neurologistas e 6 paliativistas. Utilizado guião de
entrevista semiestruturada com recurso a áudio-gravação.
Resultados: Ambas os grupos consideram pertinente o encaminhamento do doente
com DEM para CP. Existem inúmeros fatores a condicionar o encaminhamento: a
sociedade (falta de conhecimento sobre DEM e CP; estigma que associa os CP à doença
oncológica e fase final da vida), políticas/sistema de saúde (falta de estruturas e equipas
especializadas para receber o doente com DEM e dar apoio a este e à sua família;
dificuldade/inacessibilidade do processo de referenciação; pouco investimento na
investigação em CP), profissionais de saúde (falta de formação em DEM e CP; pouca
sensibilização para as necessidades do doente/família; pouco tempo para educar e
capacitar cuidadores; défice na investigação em CP), doente/família (estigma e falta de
conhecimento sobre a índole/benefícios dos CP; falta de conhecimento sobre DEM e
como cuidar o familiar; dificuldade em aceitar que outros cuidem).
Conclusão: Os CP são uma resposta oportuna para as necessidades das pessoas com
DEM. Contudo os profissionais de saúde apresentam défice de formação na área da DEM
e CP, tendo este aspeto influência nas perceções que constroem em relação a associação
de ambas as valências. A introdução destes e uma abordagem interdisciplinar e
integrativa, desde o momento do diagnóstico, seria uma mais-valia para os doentes, sua
família/cuidadores e para a sociedade em geral, pelo que se deverão desenvolver
estratégias de mitigação das dificuldades/barreiras referidas.
Introduction: DEM is an irreversible syndrome caused by progressive neurodegeneration, characterized by loss of memory, language and ability to perform ADLs. It is a challenging disease not only for the problems it causes for the patient / family but also for health professionals. As a possible answer to this arises PC with the purpose of adapting and prioritizing care, promoting the best possible quality of life and respect for human dignity. Objective: To identify factors that affect the accessibility to PC of patients with DEM from the perspective of neurologists and palliative carers. Method: Descriptive, qualitative study by means of thematic analysis. Snowball sampling, consisting of 6 neurologists and 6 palliative practitioners. Semi-structured interview script used with audio recording. Results: Both groups considered pertinent the referral of the patient with DEM to PC. There are numerous factors conditioning referral: society (lack of knowledge about DEM and PC; stigma that associates PC with cancer and end-of-life), policies / health system (lack of structures and specialized teams to receive the patient with DEM and support him and his family, difficulty / inaccessibility of the referral process, little investment in PC research), health professionals (lack of training in DEM and PC; little awareness of patient / family needs; little time to educate and train caregivers; research deficit in PC), patient / family (stigma and lack of knowledge about the nature / benefits of PC; lack of knowledge about DEM and how to care for the family member; difficulty accepting care from others) . Conclusion: PC is a prudent response to the needs of people with DEM. However, health professionals have a training deficit in the areas of DEM and PC, and this aspect influences the perceptions they build regarding the association of both valences. The introduction of these and an interdisciplinary and integrative approach from the moment of diagnosis would be an asset for patients, their family / caregivers and society in general, therefore strategies should be developed to mitigate the difficulties / barriers referred above.
Introduction: DEM is an irreversible syndrome caused by progressive neurodegeneration, characterized by loss of memory, language and ability to perform ADLs. It is a challenging disease not only for the problems it causes for the patient / family but also for health professionals. As a possible answer to this arises PC with the purpose of adapting and prioritizing care, promoting the best possible quality of life and respect for human dignity. Objective: To identify factors that affect the accessibility to PC of patients with DEM from the perspective of neurologists and palliative carers. Method: Descriptive, qualitative study by means of thematic analysis. Snowball sampling, consisting of 6 neurologists and 6 palliative practitioners. Semi-structured interview script used with audio recording. Results: Both groups considered pertinent the referral of the patient with DEM to PC. There are numerous factors conditioning referral: society (lack of knowledge about DEM and PC; stigma that associates PC with cancer and end-of-life), policies / health system (lack of structures and specialized teams to receive the patient with DEM and support him and his family, difficulty / inaccessibility of the referral process, little investment in PC research), health professionals (lack of training in DEM and PC; little awareness of patient / family needs; little time to educate and train caregivers; research deficit in PC), patient / family (stigma and lack of knowledge about the nature / benefits of PC; lack of knowledge about DEM and how to care for the family member; difficulty accepting care from others) . Conclusion: PC is a prudent response to the needs of people with DEM. However, health professionals have a training deficit in the areas of DEM and PC, and this aspect influences the perceptions they build regarding the association of both valences. The introduction of these and an interdisciplinary and integrative approach from the moment of diagnosis would be an asset for patients, their family / caregivers and society in general, therefore strategies should be developed to mitigate the difficulties / barriers referred above.
Description
Keywords
Demência Cuidados paliativos Acessibilidade Dementia Palliative care Accessibility