Navigating Glycogen Storage Disease: The Spiritual and Cultural Journeys of Jordanian Mothers

This study explored the lived experiences of Jordanian mothers caring for children with Glycogen Storage Disease (GSD), with a particular focus on the spiritual and cultural frameworks that shaped their caregiving. Using a descriptive phenomenological approach, semi-structured interviews were conducted with 13 mothers. The findings revealed significant emotional, financial, and social burdens, including stigma, exhaustion, and strained family dynamics. Mothers consistently drew on their Islamic faith to interpret and endure these challenges, viewing caregiving as a spiritual duty and relying on practices such as prayer, patience, and Qur'ānic recitation. Many also expressed unmet spiritual care needs and called for greater integration of faith-sensitive support within healthcare and community settings. These findings underscore the need for holistic care models that acknowledge the central role of spirituality in shaping caregiver resilience and meaning-making in rare disease contexts.