The impact of disease uncertainty on caregiving readiness among family caregivers of Chinese children with congenital cataracts: A multicenter cross-sectional survey.

Abstract

Purpose: To explore the factors associated with caregiving readiness among family caregivers of Chinese children with congenital cataracts, with a focus on the relationship with disease uncertainty.

Design and methods: This multicenter cross-sectional approach included 129 family caregivers from three tertiary hospitals. Data were collected between January and June 2023. The Caregiver Readiness Scale, the Parental Illness Uncertainty Scale, and the General Information Questionnaire were used. Spearman correlation analysis was conducted to examine the relationship between disease uncertainty and caregiving readiness, followed by a generalized linear regression model to identify significant factors influencing caregiving readiness.

Results: Caregivers were predominantly mothers (89.1 %), with an average readiness score of 15.39 ± 1.94. The disease uncertainty median was 74 (70, 78), indicating a significant negative correlation with readiness (r = -0.829, p < 0.001). Regression identified the caregiver's education, the child's age, and the ambiguity and lack of clarity dimensions of disease uncertainty as predictors of readiness.

Conclusion: This study revealed that family caregivers of children with congenital cataracts experienced moderate levels of readiness, which was significantly associated with disease uncertainty. Nurses should screen for and support family caregivers who are less prepared, particularly those caring for younger children or those with lower educational levels. Interventions should address specific aspects of disease uncertainty to increase caregiving readiness among family caregivers.

Implications for practice: This study underscores the importance of targeted education and support for family caregivers to reduce uncertainty and enhance readiness, ultimately improving home care outcomes for children with congenital cataracts.