Document Type

Article

Publication Date

12-2025

Keywords

Parent caregivers, parenting stress, parent well-being, occupational engagement, complex needs, chronic conditions

Abstract

Unmet needs in parent of children with chronic and complex conditions often result in adverse outcomes to their mental health and well-being. This descriptive phenomenological study explores their lived experiences and daily participation patterns. Thirteen participants in a global cohort shared their experiences via a secure digital platform. Five themes emerged illustrating the parents' pursuit of well-being and the barriers encountered: Embodying the Caregiver Life, Navigating Intricate Realities, Emotional and Existential Landscape, Navigating Healthcare Systems, and Connected Yet Alone. This study underlies parents' occupational participation challenges and the crucial need to address them using parent-centered approaches to promote family well-being.

Comments

Web of Science

Taylor & Francis

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