Fatores associados à qualidade de vida de cuidadores de pacientes pediátricos com cardiopatias congênitas

Abstract

Caregivers of patients with congenital heart defects may experience overload, impacting their quality of life. Religiosity and spirituality has shown a positive factor in quality of life parameters. The present study had the general objective of evaluating the socioeconomic impact of pediatric patients' health issues and religiosity on the quality of life of caregivers, in the pediatric outpatient clinic of a tertiary hospital and as specific objectives to characterize the caregivers considering socioeconomic and clinical variables, characterize the pediatric patients regarding their clinical profile, determine WHOQOL-BREF Religiosity and Quality of Life scores and evaluate the relationships between sociodemographic variables, clinical conditions, and religiosity on quality of life. The methodology used in the study was cross sectional and descriptive, being conducted in a university hospital in the interior of Minas Gerais, covering caregivers of pediatric patients with congenital heart disease in a pediatric outpatient clinic. The following instruments were used: General Social Questionnaire and Gestational History, P-DUREL, Brief Spiritual and Religious Coping Scale and WHOQOL- Bref. The results were made possible with the participation of 99 caregivers, the majority of whom were self-reported black/brown (N=61, 61.6%). Of the total, 53 (53.5%) had occupations without income, with the majority (N=42, 42.4%) of evangelical religion with moderate to high levels of religiosity and quality of life above 50% in the dimensions evaluated. As for pediatric patients, 63 (63.6%) were aged 0 to 5 years and the majority (N=47; 47.5%) did not have any limitations such as running or not being able to go to school. Multiple linear regression demonstrated that negative religious and spiritual coping, self reported color and not having a job had a negative impact on the dimensions of quality of life and child's age and intrinsic religiosity had a positive impact. Therefore, it is concluded that despite the negative socioeconomic variables, intrinsic religiosity had a positive impact on quality of life, demonstrating its importance as a positive factor in coping with the disease in pediatric patients. However, caution is needed when evaluating religiosity and spirituality, as this can have a negative impact represented by negative religious and spiritual coping, which had a significant negative impact on this work. These factors contribute to a broader view beyond the disease, in which professionals can better see family dynamics.