National assessment of school resources in cystic fibrosis care centers

ABSTRACT

Background: Assessment of the prevalence and correlates of educational risk and school support needs of children with cystic fibrosis (CF) is limited. Educational support for people with CF has become even more pressing with the onset of COVID-19 and the dramatic changes seen in the education system nationally. Method(s) A cross-sectional needs assessment survey for pediatric and adult CF center care team members across the United States was distributed to assess student and family school needs, resources, services offered, and current processes for identification of concerns and intervention. Care teams were asked to complete the survey as a group or specify respondents who routinely provide school support. Result(s) The survey was sent to 3684 individuals within the CF care center network, on April 1, 2022, with a closure date of April 22, 2022. Preliminary results at time of this submission include 56 survey responses, completed primarily by social workers (40%) and physicians (23%), representing approximately 20% of all centers. Thirty-eight percent of respondents reported that their center administered a screening tool to assess general school functioning routinely or as needed. Specific school topics most widely assessed included need for CF care (treatments and medications) to occur at school (73%), concerns about emotional and behavioral functioning in the school setting (70%), CF daily care burden affecting school attendance and performance (63%), and CF-specific needs in university settings (63%). According to the care team report, families most often asked for help with school accommodations related to ability to carry enzymes (74%), carrying awater bottle (50%), additional bathroom passes (43%), and ability to step out of the classroom as needed for gastrointestinal problems (50%). Nurses, program coordinators, and social workers are the team members addressing school needs most often (55%, 42%, and 90%, respectively). Sixty-two percent of respondents reported having access to a hospital-based teacher for education support during inpatient stays, 10% had access to school services or educational support, and 5% had access to someone with a background or training in education or teaching (other than hospital-based teacher) for ambulatory care. Upon closure of the survey, the above data will be updated, and more complete identification of current resources and future needs will be described at the 2022 North American Cystic Fibrosis Conference. Conclusion(s) This survey will be the most comprehensive assessment to date of ongoing school services at CF centers nationally. Results will be used to identify specific areas of need to guide development of a roadmap addressing proactive monitoring of school functioning and resources in the CF care modelCopyright © 2022, European Cystic Fibrosis Society. All rights reserved