Trabalho, saúde e resiliência de cuidadores familiares de crianças e adolescentes em tratamento oncológico

Abstract

This study aimed to analyze the factors associated with the level of resilience of family caregivers of hospitalized children and adolescents for oncologic treatment and associated factors. This was a quantitative-qualitative study, done in 2018. In the quantitative stage, a cross-sectional study was developed with 62 participants, who answered questions about the sociodemographic, occupational and health profile, CD-RISC-10-Br for SRQ-20 for the propensity to develop Minor Psychic Disorders (MPD), the WHOQOL-bref on quality of life and the PSS-14 for perceived stress. Data analysis was performed in the SPSS program, version 18.0. In the qualitative step, we conducted semi-structured interviews with 16 participants and submitted to the content analysis proposed by Bardin. The research follows the ethical precepts, according to resolution 466/2012 of the National Health Council and was approved by the Committee of Ethics and Research under the CAAE nº 81527317.6.0000.5346. There were predominant female caregivers (80.6%), married or stable (69.4%), those who had a child (32.3%) and were Catholic (77.4%). Had previous disease (21%), taking medication (22.6%), did not practice physical activity (64.5%) and reported having some leisure activity (67.7%) and had done some work activity before diagnosis of the disease (66.1%). Of those, 44% kept working. And currently 57.4% no longer work. In the health aspects, 48.4% presented a moderate level of resilience; 45% with suspicion for MPD and 41% with high level of stress. Regarding quality of life, they are satisfied in the physical domains (67.7%); psychological (62.9%) and social relations (61.3%); and not satisfied with the environment (75.8%). The lower the level of resilience the higher the score for stress and the suspicion for MPD (p <0.05). Family caregivers not satisfied with QOL in the environment domain presented an intermediate level of resilience (55.3%). In the qualitative stage, the results were grouped into three categories: the first, Strategies to stay in the labor market: a challenge for the caregivers, reveals that few family caregivers kept their formal jobs and, for this, used strategies such as medical certificate, vacations and proof of hospitalization of the child. For others, informal work is an alternative for this occasion. In the second category, the confrontation of unemployment: feelings of leaving work for care, identifies the meanings and feelings involved in the decision to dedicate exclusively to care the third category, changes in the health of the family caregiver after the diagnosis of the childhood and juvenile cancer: an alert to the health team, shows several changes in the health of family caregivers and the strategies used to confront the reality experienced. Although stressful and worrying, the care routine can provide learning, showing that despite the difficult situation experienced, what matters in fact is the health of the child or adolescent. And faith, religiosity and social support are factors that help them in the process of facing childhood and juvenile cancer.