INVESTIGATION STRESS LEVEL, PERCEPTION OF SOCIAL SUPPORT, CAREGIVING BURDEN AND CORONAVIRUS PHOBIA OF CAREGIVERS OF CHILDREN WITH CYSTIC FIBROSIS DURING THE CORONAVIRUS PANDEMIC

Abstract

Purpose: Although the perception of care burden and social support is important for caregivers in chronic disease management, the perception of care burden and social support of families with children with cystic fibrosis (CF) in the pandemic has not been examined. The aim of this study was to examine the level of perceived stress, perceived social support, care burden of caregivers of patients with CF. Methods: Eleven mothers with children with CF and twelve mothers with healthy children were included in this cross-sectional study. The perceived stress level was evaluated with the "Perceived Stress Scale (PSS-10). The level of perceived support was evaluated using the Multidimensional Perceived Support Scale (MDPSS) and caregiver burden of mothers was assessed with the Burden Interview (BI). Results: The median BI of the mothers of individuals with CF was 26.00 (11.00-37.00) and median total scores of MDASDS score 48.00 (57.00-81.00). The perceived stress level was significantly higher in the mothers of healthy children group than in the mothers having children with CF group (p = 0.016). PSS of mothers who have a child with CF related to the caregiving burden (r = 0.710; p = 0.014), friends subgroup scores of MDASDS (friends) (r = -0.697; p = 0.017), and total scores of MDASDS (total) (r = -0.839; p = 0.001). In addition, the caregiving burden of mothers in this group was correlated MDASDS (family) (=-0.627; p=0.039). Discussion: Perceived stress and caregiver burden among caregivers of patients with cystic fibrosis increased during the COVID-19 pandemic. Perceived social support is negatively associated with perceived stress and care burden. Evaluating the perception of social support in families of individuals with CF may help to reduce the stress and care burden perceived by caregivers in the face of sudden, unexpected events.

Keywords

• anxiety
• caregiver burden
• COVID‐19
• cystic fibrosis
• social support

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