Dados do Trabalho

Título

SLEEP QUALITY, QUALITY OF LIFE, AND PARENTAL STRESS IN FAMILIES OF CHILDREN WITH COMPLEX CHRONIC CONDITIONS DURING THEIR HOSPITAL DISCHARGE PROCESS

Introdução

With the decrease in infant mortality rates associated with technological progress,children with severe chronic illnesses have been surviving,leading to a subset of children with complex chronic conditions (CCC).Chronic illness impacts the lives of both the child and their family.How families cope with the demands of parenting can lead to stress that affects well-being,quality of life, and sleep

Objetivo

To assess the quality of sleep, quality of life, and stress levels in families of children with chronic health conditions and compare them with families of healthy children

Métodos

Cross-sectional observational quali-quantitative evaluation.Eligibility criteria included primary caregivers of children with CCC who were hospitalized from January 1,2018 to October 31,2023 and required care for discharge.Exclusion criteria encompassed CCC patients who deceased,were readmitted or were unreachable by phone.Questionnaires sociodemographic data,alongside chart reviews,the Pittsburgh Sleep Quality Index,Parental Stress Scale and abbreviated WHOQOL were employed.Analyses comprised descriptive statistics and one-way ANOVA.Jamovi software was utilized with statistical significance set at p<0.05

Resultados

The sample comprised 31 caregivers of children with CCC and 31of healthy children.Primary caregivers of children with CCC had a mean age of 36 years,with 93% being female,52% belonging to socioeconomic level C1.Caregivers of healthy children had a mean age of 36 years,with 90% being female,39% belonging to socioeconomic level C2.Females accounted for 45% of the patients,a mean age of 83 months.The underlying conditions included genetic causes in 32.3% and neurological in 32.3%.The mean Pittsburgh Sleep Quality Index was 6.8 in the healthy group and 7.6 in the CCC group.Regarding sleep quality 74% of CCC caregivers and 71% of healthy children were rated as poor.The total sleep time of CCC caregivers averaged 5 hours/45 minutes and that of healthy children was 6 hours/27 minutes.Comparisons between the groups revealed significant differences in the time spent on daytime care(p<0.001),total parental stress scale scores (p<0.001),parental stressor domain(p<0.001),WHOQOL psychological domain(p<0.023) and social relationships domain(p<0.049)

Conclusões

Relatives of children with CCC,compared to families with healthy children, spend more time on caregiving,experience higher parental stress and report lower quality of life in psychological and interpersonal aspects

Palavras -chave

Chronic Diseases,Hospital Discharge,Pediatrics,Family