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Parental experiences : the transition to school for a child with cystic fibrosis Meadows, Karen Lynne

Abstract

This research study was designed to explore the ways in which parents of a child with cystic fibrosis experienced their child's transition to school. Previous research has focused on the barriers families have faced, the challenges children with cystic fibrosis place on various systems and the intense medical needs of these children. However, due to changes in the treatment of cystic fibrosis and the improved quality of life of children diagnosed with this disease, a different perspective within the research is now required. It was discovered during this qualitative study that it is necessary to apply an ecological systems approach to exploring this issue as there are many factors within the family's experience that play a significant role during this time of transition in their lives. The qualitative descriptive analysis of the data revealed eight key themes. These themes included illness narratives, transition to school, strengths, supports accessed, protection, normalization, disclosure and future fears. The findings of this study allow for a deeper understanding of the families' experiences and document the families' ability to arrange the accommodations their child required, the strengths they relied on, the supports they accessed, and their unique needs and concerns during this time. The discussion highlights the importance for social workers when working with children and their families to work in partnership with families, incorporating strength-based principles into our practice, and applying an empowerment model within a family-centered approach to practice.

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