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Os dilemas vivenciados durante o luto antecipatório pelos cuidadores familiares
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Advisor(s)
Abstract(s)
Introdução: Há evidência de que a experiência dos cuidadores familiares (CF) em cuidados
paliativos é geralmente acompanhada de elevado distress emocional, para o qual contribuem
os múltiplos dilemas associados ao cuidar em fim-de-vida. No entanto, a literatura sobre esta
vivência ainda é escassa. Sendo este um aspeto passível de modificação através de intervenção
psicológica, é essencial desenvolver mais investigação sobre a natureza dos dilemas do
cuidador. Objetivo: Estudar os dilemas vivenciados pelos cuidadores familiares de doentes em
cuidados paliativos ao longo do luto pré-morte. Método: Foi utilizada uma abordagem
qualitativa através da análise temática dos dados obtidos em entrevistas semiestruturadas
realizadas a 31 CF de pacientes acompanhados em cuidados paliativos no Centro Hospitalar
Universitário Lisboa Norte. Resultados e conclusão: Foram encontrados diversos dilemas
relacionados com o fim de vida do seu familiar, tendo estes sido agrupados em 4 grandestemas:
(a) Como lidar com a doença?; (b) Onde é o meu lugar?; (c) Qual é o meu papel? e (d) Como
será o meu futuro? Estes resultados contribuem para uma melhor identificação das dificuldades
dos CF durante o luto antecipatório, no sentido de minimizar os sentimentos negativos que daí
resultam, e assim promover a qualidade dos cuidados e o bem-estar desta população de risco.
ABSTRACT: Introduction: There are evidence that the experience of family caregivers (CF) in palliative care is usually accompanied by high emotional distress, associated with multiple dilemmas surrounding the “end-of-life care” problematic. However, the literature on this is still lacking. As this is a problematic that concerns psychological intervention, it is imperative to conduct additional research on nature of caregiver dilemmas. Objective: To study the dilemmas experienced by family caregivers of patients in palliative care during pre-death bereavement. Method: A qualitative approach was used through the thematic analysis of data obtained in semi-structured interviews conducted with 31 family carers of patients in palliative care at the Centro Hospitalar Lisboa Norte. Results and conclusion: Several dilemmas related to the end of life of their family member were identified, and were organized into 4 major categories: (a) How to deal with the disease?; (b) Where is my place?; (c) What is my role? and (d) What will my future be like? The results of this study are expected to contribute to the creation of a fresh framework for psychological intervention, aimed at assessing, addressing, and identifying the challenges faced by CF. These findings will help minimize the negative feelings that result from anticipatory grief, improving the quality of care and promoting the wellbeing of CF.
ABSTRACT: Introduction: There are evidence that the experience of family caregivers (CF) in palliative care is usually accompanied by high emotional distress, associated with multiple dilemmas surrounding the “end-of-life care” problematic. However, the literature on this is still lacking. As this is a problematic that concerns psychological intervention, it is imperative to conduct additional research on nature of caregiver dilemmas. Objective: To study the dilemmas experienced by family caregivers of patients in palliative care during pre-death bereavement. Method: A qualitative approach was used through the thematic analysis of data obtained in semi-structured interviews conducted with 31 family carers of patients in palliative care at the Centro Hospitalar Lisboa Norte. Results and conclusion: Several dilemmas related to the end of life of their family member were identified, and were organized into 4 major categories: (a) How to deal with the disease?; (b) Where is my place?; (c) What is my role? and (d) What will my future be like? The results of this study are expected to contribute to the creation of a fresh framework for psychological intervention, aimed at assessing, addressing, and identifying the challenges faced by CF. These findings will help minimize the negative feelings that result from anticipatory grief, improving the quality of care and promoting the wellbeing of CF.
Description
Dissertação de Mestrado realizada
sob a orientação da Professora Doutora
Manuela Alexandra de Moura
Coelho, apresentada no Ispa –
Instituto Universitário para
obtenção de grau de Mestre na
especialidade de Psicologia
Clínica.
Keywords
Cuidadores familiares Pré-luto Cuidados paliativos Dilemas de fim de vida Family carers Antecipatory grief Palliative care Enf-of-life dilemmas