Dificuldades relatadas por cuidadores de crianças e adolescentes com leucemia: alterações comportamentais e familiares

Abstract

RESUMOO tratamento de câncer na infância expõe pacientes e familiares a diversas exigências e desafios, que envolvem alterações na dinâmica familiar, expectativas em relação ao tratamento, medo de recaídas, custos financeiros e mudanças na rotina profissional e familiar. O objetivo deste estudo foi analisar o impacto do semestre inicial de tratamento para leucemia sobre a rotina, dinâmica familiar, práticas educativas parentais e padrões comportamentais de pacientes e de cuidadores, a partir de entrevistas semiestruturadas realizadas em dois momentos durante o tratamento. Participaram deste estudo 30 cuidadores de crianças e adolescentes em tratamento para leucemia. Os resultados indicam alterações importantes no comportamento dos pacientes, tais como agressividade exacerbada e não-colaboração com tratamento. As práticas educativas parentais foram caracterizadas por maior permissividade, ganhos secundários e superproteção. Por outro lado, os cuidadores indicaram a aquisição gradual de habilidades para lidar com procedimentos médicos-invasivos e efeitos colaterais da medicação antineoplásica, ao longo do tratamento. Os participantes destacaram alterações importantes na rotina profissional dos cuidadores e na rotina social-familiar. Os dados indicam a necessidade de investigar de forma específica e sistemática as dificuldades às quais cuidadores e pacientes são expostos ao longo do tratamento, a fim de possibilitar estratégias de intervenção psicossocial mais eficientes. Palavras-chave: câncer pediátrico; leucemia pediátrica; cuidadores. ABSTRACT Difficulties Reported by Caregivers of Children and Adolescents With Leukemia:Behavioral and family changes Childhood cancer treatment exposes patients and their families to several demands and challenges, which involve changes in family dynamics, beliefs related to the treatment, fear of relapse, financial costs, and changes in both professional and family routines. The main goal of this study was to analyze the impact of the first six months of leukemia treatment upon routine, family dynamics, educational parenting patterns, and patients´ and caregivers´ behavioral patterns, using semi-structured interviews carried out at two times during treatment. Thirty caregivers participated in the study. The results indicate relevant changes related to patients' behavior, such as heightened anger and absence of collaboration. Educational parenting patterns were characterized by higher permissiveness during this stage in addition to secondary gains and overprotective behavior. On the other hand, the caregivers indicated the gradual acquisition of skills to deal with invasive procedures and side effects related to antineoplasic medication, during treatment. The participants highlighted relevant changes related to caregivers´ professional and social-family routine. These data indicate the need to investigate, in a specific and systematic way, the difficulties to which caregivers and patients are exposed to during treatment, so as to promote more efficient psychosocial intervention st...

Indicadores de estresse e sobrecarga em cuidadores formais e informais de pacientes oncológicos

“…Os estudos com cuidadores informais de pessoas com câncer revelaram também implicações em suas vidas com destaque para: desestruturação da sua rotina diária (rotina em função do cuidado do familiar), sobrecarga de tarefas, sentimentos emocionais (Ignacio, Storti, Bennute, & Lucia, 2011;(Sales et al 2010;Faria & Cardoso, 2010), vida profissional, lazer, vida familiar, prazer, cuidados pessoais, vida conjugal (Beck & Lopes, 2007). Sobre o prejuízo na relação conjugal, não há consenso na literatura, pois alguns estudos relatam que as relações parentais melhoram após o adoecimento do familiar (Beltrão, Vasconcelos, Pontes, & Albuquerque, 2007;Kohlsdorf & Costa Junior, 2010). Em relação às principais dificuldades encontradas pelos cuidadores informais foram apontadas: a falta de conhecimento sobre a doença, dificuldades para lidar com as fases da doença, dificuldade financeira e na administração de medicamentos.…”

Impacts on perspective of death in relatives of pediatric oncology patients: a systematic review

“…Therefore, it is important to mention the presence of common features that families experience from diagnosis to death of a pediatric oncology patient. By the latest research are evident: family breakdown [1,23,24]; maternal stress levels much higher than paternal [4,12,13,21]; adding new knowledge and behaviors regarding treatment disease [3,10,15]; mother as primary caregiver; religiosity as a way of facing [1,9,12,16]; and costs expended during the illness and implications [3,15,17,20].…”

“…The investigations indicate that the acceptance of the disease by parents is performed more easily when they begin to understand more about the disease and its reverberations [15]. They also describe this kind of information as contributing to their subsequent well-being as bereaved parents [22].…”

“…Moreover, mothers tend to be more involved with the care of the sick child, more responsible for medication and treatment decisions, and more likely to stay in hospital with the child. In contrast, fathers tend to work as much as possible and generally try to maintain normal family life for other children in the family [13,15]. Therefore, the main caregiver is the mother, while the father takes the responsibility of making up any economic necessities [19,23].…”

“…It should be noted the perspective of imminent death intervening excessively on the couple relationship of the parents reflecting on the interaction between the child with cancer and the other brothers [1]. However, depending on the affective and emotional interactions interchanged to the illness, it can be an indicator of greater proximity and familiar cohesion [15].…”