Abstract

FERNANDES, Leiliane; SANTOS, Mariana; COLLET, Neusa  and  NOBREGA, Vanessa da. Childhood chronic disease: uncertainty of caregivers against complexity of the disease. Psic., Saúde & Doenças [online]. 2021, vol.22, n.2, pp.556-566.  Epub Aug 31, 2021. ISSN 1645-0086.  https://doi.org/10.15309/21psd220220.

Chronic childhood illness’ complexity can reflect on a family's level of uncertainty and influence the care provided. Thus, the objective was to verify the association between care needs’ complexity of children with chronic diseases and the level of uncertainties of their main caregivers. A cross-sectional, quantitative study occurred between December/2017 and October/2018 in the Pediatric Clinic of a university hospital in Brazil. Data collection occurred with 35 main caregivers of these children through a questionnaire of the caregiver/child sociodemographic data, a questionnaire for the classification of the complexity of the chronic disease in the child and the Mishel Uncertainty in Illness Scale for Family Members. Descriptive statistics, Student's t-test and Fisher's exact test were used in analysis. The results showed the predominance of the age group between 21 and 30 years old (61.8%), completed Elementary and Middle School (57.1%) and 77.1% medium level of uncertainty. The length of hospitalization influence was identified as a possible identifier of more complex cases. 45.7% of cases had low complexity of special needs and had a medium level of uncertainty. However, 14.3% of low complexity cases had higher levels of uncertainty than those of medium complexity (8.6%), showing independence between the variables uncertainties and complexity of the chronic disease. The study revealed this association between the complexity of chronic disease and the level of uncertainties of caregivers, revealing a multidimensional character of uncertainty such as the influence of age, education level, length of hospital stay.

Keywords : Uncertainty; caregivers; chronic disease; child.

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