The role of hope in adaptation to uncertainty: The experience of caregivers of children with Down syndrome

Objective: The goal of this study was to investigate the relationships between perceived uncertainty, hope, and adaptation in caregivers of children with Down syndrome (DS). Methods: A total of 546 caregivers were recruited from local and national DS groups and from a DS clinic list. A cross-sectional survey examined caregivers' levels of perceived uncertainty, hope, and adaptation. The hope that caregivers had for their child was also measured. Results: Uncertainty, hope and adaptation were all significantly correlated, with uncertainty and hope independently predicting caregiver adaptation. Caregivers' motivation to reach goals for their child was higher than their ability to think of ways to meet those goals, and their lessened ability to think of ways to reach goals was significantly related to decreased adaptation levels. Conclusion: Findings from this study suggest that having hope in the face of uncertainty is important in adaptation but that caregivers struggle with having hope related to thinking of ways to reach goals for their child. Practice implications: The results of this study indicate that perceived uncertainty and hope may be important targets for improving psychological well-being. Interventions that assist caregivers in setting and attaining appropriate goals may be of particular interest.