Longitudinal Assessment of Educational Risk for K-12 Students with Cystic Fibrosis

Education‐related needs for children with cystic fibrosis: Perspectives of US pediatric care teams

“…Tools such as the Brief School Needs Inventory have been validated in youth with chronic disease and used in children with CF. 12,21 Staff providing education-related support should remain cognizant that parents of children with CF may have challenges navigating relationships with schools and care providers, supporting their child's emotional health, and ensuring physical needs are being met while at school. Lack of clarity about who is responsible for their child's care, the level of education among school staff about their child's condition, and their child's own abilities to provide care independently may contribute to stress around school.…”

“…Benefits of a dedicated education degree include an understanding of educational theory, educational services, educational leadership, and educational policies that each may impact the school experience of a person with CF. Having a dedicated school specialist within a CF care center may increase the likelihood that educational needs assessments are offered and conducted consistently and systematically to guide implementation of interventions, reducing the workload on other staff, 12 and serving as a “translator” between school and medical environments. Procuring sustainable funding for school specialists and other education support staff may require institutional and/or philanthropic support.…”

“…11 Potential contributors to declining graduation rates may include overall health, school absences, negative attitudes towards school, or mental health disorders though it is not well known which of these is/are the most important underlying factor(s). 6,11,12 This delay or failure to complete high school can become a barrier for advanced education and independent living. 6 Thus, supporting educational success in the CF pediatric population is a care issue of increasing importance.…”

“…Despite increasing high school graduation rates in the United States, rates among people with CF are decreasing 11 . Potential contributors to declining graduation rates may include overall health, school absences, negative attitudes towards school, or mental health disorders though it is not well known which of these is/are the most important underlying factor(s) 6,11,12 . This delay or failure to complete high school can become a barrier for advanced education and independent living 6 .…”

“…This dynamic nature and broad range of education‐related needs can present challenges for CF centers with limited staff and resources. Currently, there is limited empirical knowledge about education‐related needs of the spectrum of children with CF and the support that CF centers provide 12,14,15 . The objective of this study was to survey a national sample of pediatric CF care centers and describe how care teams perceive: (1) the education‐related needs of patients with CF; (2) the processes CF centers use to identify and document needs and the resources used to address education‐related needs; and (3) gaps in education‐related resources available to care teams.…”