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Avaliação dos factores psicossociais em cuidadores familiares: estudo comparativo Brasil - Portugal
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Advisor(s)
Abstract(s)
Os cuidadores familiares desempenham um papel muito importante ao realizar os
cuidados complexos exigidos por um doente em situação de doença avançada, incluindo a
gestão e administração de medicamentos, cuidados de higiene, alimentação, cuidados físicos,
transporte e ainda, por muitas vezes, regem as tarefas domésticas. Entretanto, cuidar de um
familiar com uma doença terminal pode acarretar riscos para a saúde física e psicológica do
cuidador, levando-o a estados de fadiga física e mental, ansiedade, depressão, stress, isolamento
social, deterioração da saúde e da qualidade de vida. Tanto a vivência de prestação de cuidados
quanto a experiência de luto após à perda do ente querido são influenciadas pelo contexto
sociocultural em que estão inseridas.
O principal objetivo desta investigação foi identificar, através de um estudo prospectivo
e longitudinal, fatores psicossociais que poderiam afetar o processo de cuidar e a fase inicial do
luto de cuidadores familiares de doentes em cuidados paliativos. Como objetivos secundários
pretendeu-se verificar as possíveis alterações na percepção da sobrecarga do cuidador, no
funcionamento familiar, no suporte social e na sintomatologia psicopatológica em dois
momentos de avaliação e comparar os resultados entre a população de cuidadores familiares
brasileiros e portugueses.
A investigação foi dividida e apresentada em cinco estudos empíricos. Primeiramente
foi realizada uma revisão sistemática da literatura sobre a sobrecarga do cuidador, a validação
do instrumento de avaliação da relações familiares FRI (Family Relationship Index), e em
seguida foi descrito a pesquisa realizada com a população de cuidadores familiares brasileiros,
com a população de cuidadores portugueses e finalmente o artigo que engloba a comparação
entre os dados coletados com os cuidadores familiares brasileiros e portugueses.
A amostra total do estudo foi constituída por 135 cuidadores familiares, sendo 60
brasileiros e 75 portugueses. Os participantes foram avaliados em dois momentos, a primeira
avaliação (T0) decorreu durante a fase de prestação de cuidados e o segundo momento de
avaliação (T1) decorreu entre o primeiro e o segundo mês após o óbito do doente.
A maioria dos cuidadores era do sexo feminino, casados, filhos do doente e coabitava
com o mesmo, dedicava mais de 16 horas do seu dia aos cuidados ao doente, e tinham a
percepção de pouco suporte prático por parte dos familiares ou amigos. Os cuidadores
portugueses apresentaram níveis mais elevados de sobrecarga do que os brasileiros, e em ambas
as populações, o maior nível de sobrecarga estava associada a mais sintomatologia
psicopatológica e menor apoio prático. Nos cuidadores portugueses, a elevada sobrecarga
estava relacionada com a percepção de falta de apoio emocional, o que não acontece no caso
dos brasileiros. Em ambos os países, a percepção de maior apoio está relacionada com melhor
funcionamento familiar. Na fase aguda de luto, os níveis de ansiedade e somatização da
população brasileira decresceram, já em Portugal, os valores de sintomatologia mantiveram-se,
atingindo níveis de ansiedade, somatização e sintomas peritraumáticos significativamente mais
elevados comparativamente aos dos cuidadores brasileiros. Estes resultados confirmam a
existência de diferenças culturais que importa aprofundar em futuros estudos.
Family caregivers play a very important role in taking care of a patient with an advanced illness, including managing medication, hygiene care, nutrition, physical care, transportation, and often housework. However, caring for a family member with a terminal illness may suppose risks to the physical and psychological health of the caregiver, leading to states of physical and mental fatigue, anxiety, depression, stress, social isolation, deterioration of quality of life and health. Both the experience of care and the experience of grief, after the loss of a loved one, are influenced by the sociocultural context in which they are inserted. The main objective of this study was to identify, through a prospective and longitudinal study, psychosocial factors that could affect the care giving process and the initial phase of grief of family caregivers of patients in palliative care. Secondary objectives were to verify the possible alterations in the perception of the caregiver's burden, of the functioning of the family, of the social support and of the psychopathological symptomatology in two moments of evaluation and to compare the results among the Brazilian and Portuguese family caregivers. The study was divided and presented in five empirical studies. First, a systematic review of the literature on the caregiver's burden, second the validation of the Family Relationship Index (FRI); then the study conducted on the Brazilian family caregiver’s population, with the Portuguese caregiver’s population was described. Finally, the article that includes the comparison between the data collected with the Brazilian and Portuguese family caregivers was presented. The total sample of the study consisted of 135 family caregivers, 60 Brazilian and 75 Portuguese. The participants were evaluated at two different moments, the first evaluation (T0) was during the care phase and the second moment of evaluation (T1) was between the first and second month after the death of the patient. Most caregivers were women, married, and patient’s daughters, cohabited with the patient, spent more than 16 hours of their day caring for the patient, and received little practical support from family or friends. Portuguese caregivers presented higher levels of burden than Brazilians did, and in both populations the higher level of burden was associated with more psychopathological symptomatology and less practical support. In Portuguese caregivers, high burden was related to the perception of lack of emotional support, which is not the case with the Brazilians. In both countries, the perception of greater support is related to better family functioning. In the acute phase of grief, the levels of anxiety and somatization of the Brazilian population decreased, whereas in Portugal, the values of symptoms remained, reaching significantly higher levels of anxiety, somatization and peritraumatic symptoms compared to the Brazilian caregivers. These results confirm the existence of cultural differences that should be studied in more detail in future researches.
Family caregivers play a very important role in taking care of a patient with an advanced illness, including managing medication, hygiene care, nutrition, physical care, transportation, and often housework. However, caring for a family member with a terminal illness may suppose risks to the physical and psychological health of the caregiver, leading to states of physical and mental fatigue, anxiety, depression, stress, social isolation, deterioration of quality of life and health. Both the experience of care and the experience of grief, after the loss of a loved one, are influenced by the sociocultural context in which they are inserted. The main objective of this study was to identify, through a prospective and longitudinal study, psychosocial factors that could affect the care giving process and the initial phase of grief of family caregivers of patients in palliative care. Secondary objectives were to verify the possible alterations in the perception of the caregiver's burden, of the functioning of the family, of the social support and of the psychopathological symptomatology in two moments of evaluation and to compare the results among the Brazilian and Portuguese family caregivers. The study was divided and presented in five empirical studies. First, a systematic review of the literature on the caregiver's burden, second the validation of the Family Relationship Index (FRI); then the study conducted on the Brazilian family caregiver’s population, with the Portuguese caregiver’s population was described. Finally, the article that includes the comparison between the data collected with the Brazilian and Portuguese family caregivers was presented. The total sample of the study consisted of 135 family caregivers, 60 Brazilian and 75 Portuguese. The participants were evaluated at two different moments, the first evaluation (T0) was during the care phase and the second moment of evaluation (T1) was between the first and second month after the death of the patient. Most caregivers were women, married, and patient’s daughters, cohabited with the patient, spent more than 16 hours of their day caring for the patient, and received little practical support from family or friends. Portuguese caregivers presented higher levels of burden than Brazilians did, and in both populations the higher level of burden was associated with more psychopathological symptomatology and less practical support. In Portuguese caregivers, high burden was related to the perception of lack of emotional support, which is not the case with the Brazilians. In both countries, the perception of greater support is related to better family functioning. In the acute phase of grief, the levels of anxiety and somatization of the Brazilian population decreased, whereas in Portugal, the values of symptoms remained, reaching significantly higher levels of anxiety, somatization and peritraumatic symptoms compared to the Brazilian caregivers. These results confirm the existence of cultural differences that should be studied in more detail in future researches.
Description
Tese de Doutoramento em Psicologia, na área de especialização de Psicologia da Saúde, apresentada no ISPA - Instituto Universitário
Keywords
Cuidadores familiares Cuidados paliativos Luto Sobrecarga Sintomatologia psicopatológica Family caregivers Palliative care Burden Psychological morbidity Grief