Qualidade de Vida e Sobrecarga de Cuidadores de Crianças com Câncer

Abstract

O objetivo do estudo foi verificar a relação entre a qualidade de vida e a sobrecarga em cuidadores de crianças portadoras de neoplasia e assistidas em uma casa de apoio. A metodologia foi quantiqualitativa com a utilização de multimétodos de pesquisa. Os participantes (N = 23) foram os cuidadores dos pacientes acompanhados pela Casa de Apoio à Criança com Câncer. Os instrumentos de coleta de dados foram: um questionário sociodemográfico, a Escala Whoqol - Bref, a Escala Zarit e uma entrevista por pautas. A análise dos dados se deu pela estatística descritiva e pela análise da enunciação. Os resultados apontam uma amostra essencialmente feminina (95,7%); sendo 82,6% formada pelas mães. A maioria apresentou sobrecarga intensa (54,5%). O domínio de maior prejuízo foi o psicológico (53,98). As entrevistas confirmaram os dados obtidos nas escalas e mostraram mudanças significativas na vida dos cuidadores e da família, com prejuízo marcadamente para a vida social e a relação de trabalho. Os cuidadores sentem-se sobrecarregados, mas a sobrecarga permanece velada, já que a sua manifestação pode revelar emoções e sentimentos de culpa, difíceis de serem admitidos e elaborados.

My role and responsibility: mothers’ perspectives on overload in caring for children with cancer*

“…The strain on family relationships was very evident caused by the very treatment and hospitalization which these mothers go through, and a certain confinement resulting from this situation showing social overload. This result differs from another study that assessed the consequences of child cancer in family life and which indicated that the social problem for the families was resolved by being together with their child during hospitalization (12) . Nevertheless, it is worth emphasizing that it is normal for the parents of severely ill children to focus on their children's quality of life, defend them and put their child`s needs above their own (26) .…”

“…Another study that assessed quality of life and overload of caregivers of children with neoplasms also identified the psychological domain as the most affected one, and in addition to this there was also a prevalence of women as participants in the study, meaning those responsible for caring for other family members (12) .…”

“…The concept of overload refers to objective aspects, since it involves concrete issues related to physical and mental conditions, and subjective aspects when it involves negative feelings induced in the caregiver by care providing activities (8) . Caregiver overload has been addressed in various contexts and population profiles such as in caring for a child with chronic sickness independent of the pathology, as well as in the psychiatric field (2,12) .…”

“…The proposal for developing this study had validated instruments which analyze caregiver overload in Brazil as its starting point. Despite having some instruments that evaluate caregiver overload, it was evident that these instruments have some limitations to understanding the experience of maternal overload in caring for children with cancer, especially from the mother's perspective (2,12) . The issue of caregiver overload has already been studied from other perspectives such as from the cancer patient themselves and their family members, not only mothers.…”

Effects of Hatha Yoga on caregivers of children and adolescents with cancer: a randomized controlled trial

“…3 These individuals' life becomes intensely overloaded, with changes in the family routine, relinquishments of personal, social and professional activities, and financial implications. 2,4,5 In addition, the overload caused by this pursuit can have a psychoemotional repercussion on these family members and affect their relationship with their children and/ or adolescents. 6 Uncertainty and insecurity are present in these individuals' life, and the final goal of the experience is not necessarily the cure of cancer, but the way in which each stage of the process was experienced.…”