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Impacto da adaptação à doença no cuidador informal
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Authors
Advisor(s)
Abstract(s)
Objetivo: O objetivo do estudo foca-se na melhor compreensão sobre a adaptação dos
cuidadores informais à doença do seu familiar e como esta adaptação influenciará a
sobrecarga e a qualidade de vida destes cuidadores.
Métodos: Este estudo tem um desenho transversal, tendo um único momento de recolha.
A recolha dos dados foi realizada através de um questionário online destinado à
população de cuidadores informais/familiares de doentes oncológicos. Foram aplicadas
as seguintes escalas: Escala de ajustamento mental ao cancro de um familiar (EAMC-F),
Escala de Sobrecarga (ZBI-12) e Índice de bem-estar OMS (cinco) (WHO-5).
Resultados: Foram incluídos noventa e cinco cuidadores informais de doentes
oncológicos. Formaram-se dois grupos de cuidadores, os cuidadores atuais com cinquenta
participantes e o grupo de ex-cuidadores com quarenta e cinco participantes. A maior
parte dos cuidadores eram mulheres (86,3%) sendo estas na sua maioria filhas/os e
pais/mães (27,4 % e 28,4% respetivamente). Existe uma prevalência no recurso a estilos
de coping de “espírito de luta” e “preocupação ansiosa/revolta” em ambos os grupos. O
grupo de cuidadores atuais, apresenta em média um elevado nível de sobrecarga,
comparativamente, com o grupo de ex-cuidadores. Por fim, os índices de bem-estar
revelam que o grupo de cuidadores atuais, apresentam em média um valor de 12 pontos
considerando-se um valor baixo. Por outro lado, os ex-cuidadores apresentam em média
um valor de 14 pontos.
Conclusões: Verificou-se que as estratégias mais recorridas pelos cuidadores (atuais e
ex-cuidadores) foram estratégias de “espírito de luta”, revelando preocupação e tentativa
de adaptação positiva e ainda comprometimento com a prestação de cuidados, e por outro
lado, estratégias de “preocupação ansiosa/revolta”, estando associado à sobrecarga
emocional que é imposta nesta função e por consequência ao peso da doença. O recurso
a estas estratégias, vai de encontro com os elevados níveis de sobrecarga sentidas, no caso
dos cuidadores atuais, e sobrecarga média, nos ex-cuidadores. Por consequência da
notável sobrecarga, os índices de bem-estar encontram-se prejudicados, sendo notório nos
cuidadores atuais, estes índices estão bem baixos, no entanto, apesar de os ex-cuidadores
apresentarem índices de bem-estar superiores aos dos cuidadores atuais, não se revelam
significativamente superiores.
ABSTRACT: Backgroud: The goal of the study focus on the best understanding on the adaptation of informal caregivers to their family member´s illness, and how this adaptation will influence the burden and quality life of these caregivers. Methods: This is a cross-section study with a single collection point. Data was collected using an online questionnaire aimed at the population of informal caregivers/family of cancer patients. The following scales were used: Scale of mental adjustment to a family member’s cancer (EAMC-F), Burden Scale (ZBI-12) and Well-being Index (WHO-5). Results: Ninety-five informal caregivers of cancer patients were included. Two groups of caregivers were formed, the current caregivers with fifty participants and the group of former caregivers with forty-five participants. Most caregivers were women (86,3%), most of whom were daughters and partners (27,8% and 28,4 % respectively). There was a prevalence of “fighting spirit” and “anxious worry/return” coping styles in both groups. On average, the group of current caregivers has a high level of burden compared the group of former caregivers. Finally, the well-being indexes show that the group of current caregivers has an average score of 12, which considered a low score. On the other hand, the former caregivers had an average score of 14. Conclusions: It was found that the strategies most used by caregivers (current and former caregivers) were “fighting spirit” strategies, showing concern and attempt to adapt positively, showing commitment to the health care provision, and on the other hand, “anxious concern/return” strategies, being associated with the emotional overload that is imposed in this role and consequently in the burden of the disease. The use of these strategies is in line with the high levels of burden felt by current caregivers and average level of burden felt by former caregivers. As a result of the notable burden, these indexes are quite low. However, although former caregivers have higher well-being indexes than current caregivers, they are not significantly higher.
ABSTRACT: Backgroud: The goal of the study focus on the best understanding on the adaptation of informal caregivers to their family member´s illness, and how this adaptation will influence the burden and quality life of these caregivers. Methods: This is a cross-section study with a single collection point. Data was collected using an online questionnaire aimed at the population of informal caregivers/family of cancer patients. The following scales were used: Scale of mental adjustment to a family member’s cancer (EAMC-F), Burden Scale (ZBI-12) and Well-being Index (WHO-5). Results: Ninety-five informal caregivers of cancer patients were included. Two groups of caregivers were formed, the current caregivers with fifty participants and the group of former caregivers with forty-five participants. Most caregivers were women (86,3%), most of whom were daughters and partners (27,8% and 28,4 % respectively). There was a prevalence of “fighting spirit” and “anxious worry/return” coping styles in both groups. On average, the group of current caregivers has a high level of burden compared the group of former caregivers. Finally, the well-being indexes show that the group of current caregivers has an average score of 12, which considered a low score. On the other hand, the former caregivers had an average score of 14. Conclusions: It was found that the strategies most used by caregivers (current and former caregivers) were “fighting spirit” strategies, showing concern and attempt to adapt positively, showing commitment to the health care provision, and on the other hand, “anxious concern/return” strategies, being associated with the emotional overload that is imposed in this role and consequently in the burden of the disease. The use of these strategies is in line with the high levels of burden felt by current caregivers and average level of burden felt by former caregivers. As a result of the notable burden, these indexes are quite low. However, although former caregivers have higher well-being indexes than current caregivers, they are not significantly higher.
Description
Dissertação de Mestrado realizada
sob a orientação da Professora
Doutora Carolina Seybert,
apresentada no Ispa – Instituto
Universitário para obtenção de grau
de Mestre na especialidade de
Psicologia Clínica.
Keywords
Cuidador Informal Adaptação à doença Sobrecarga Índice de bem-estar Informal Caregiver Adapting to illness Burden Well-being Index