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Abstract

This study aimed to understand the challenges and resilience experienced by caregivers of individuals with Cardiofaciocutaneous (CFC) syndrome. The research conducted was qualitative phenomenological and involved interviewing eight individuals who identified themselves as caregivers. Through thematic analysis, five central themes were identified, in which caregivers reported about the challenges of being a caregiver as well as the resilience. The study provides implications for the areas of future research, clinical practice, and advocacy for caregivers of individuals with a rare and complex medical condition and individuals with disability.

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