Education-related needs for children with cystic fibrosis: Perspectives of US pediatric care teams.
cystic fibrosis
education
program development
Journal
Pediatric pulmonology
ISSN: 1099-0496
Titre abrégé: Pediatr Pulmonol
Pays: United States
ID NLM: 8510590
Informations de publication
Date de publication:
Jan 2024
Jan 2024
Historique:
revised:
08
09
2023
received:
14
06
2023
accepted:
26
09
2023
pubmed:
5
10
2023
medline:
5
10
2023
entrez:
5
10
2023
Statut:
ppublish
Résumé
Patients with cystic fibrosis (CF) often bring education-related concerns to their medical teams. Concerns around the ability for CF care teams to identify and address these concerns exist. We sought to describe CF care team perceptions of (1) patient and family education-related needs, (2) how these needs are identified, documented and addressed, and (3) education-related resource gaps. A survey was emailed to pediatric care teams in the CF Foundation Care Center Network in April 2022. Individuals or care teams could complete the survey. Responses were aggregated for descriptive analysis. Sixty-seven programs responded representing 52% of United States pediatric CF centers. Most centers (88%) indicated social workers primarily address school concerns. Care teams often complete school forms (99%), coach families to communicate with schools (96%), communicate with schools directly (90%), and develop educational plans (76%). Formal education risk assessment and support programs are relatively uncommon (19%). Common student-specific needs include carrying medications (75%) and leaving class for gastrointestinal issues (54%). Needs reported are informational materials for families and schools (94%), staff education about school concerns and how to address them (91%), additional staff for education-related issues (65%), and expertise in education plan development (62%). CF care teams often lack comprehensive resources to identify and address education-related concerns. Systematically performing needs assessments, improving training for providers, and evaluating the benefits of education specialists on care teams may better identify and address education-related needs. Supporting educational progression will foster continued independence and well-being in adulthood.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
95-100Subventions
Organisme : Cystic Fibrosis Foundation
ID : BOAT21Q10
Informations de copyright
© 2023 Wiley Periodicals LLC.
Références
McBennett KA, Davis PB, Konstan MW. Increasing life expectancy in cystic fibrosis: advances and challenges. Pediatr Pulmonol. 2022;57(S1):S5-S12. doi:10.1002/ppul.25733
Orenstein DM, Abood RN. Cost(s) of caring for patients with cystic fibrosis. Curr Opin Pediatr. 2018;30(3):393-398. doi:10.1097/mop.0000000000000625
Targett K, Bourke S, Nash E, Murphy E, Ayres J, Devereux G. Employment in adults with cystic fibrosis. Occup Med. 2014;64(2):87-94. doi:10.1093/occmed/kqt140
Burker EJ, Sedway J, Carone S. Psychological and educational factors: better predictors of work status than FEV1 in adults with cystic fibrosis. Pediatr Pulmonol. 2004;38(5):413-418. doi:10.1002/ppul.20090
Laborde-Castérot H, Donnay C, Chapron J, et al. Employment and work disability in adults with cystic fibrosis. Journal of Cystic Fibrosis. 2012;11(2):137-143. doi:10.1016/j.jcf.2011.10.008
Lian R, Cavalheri V, Wood J, Jenkins S, Straker LM, Hill K. Higher levels of education are associated with full-time work in adults with cystic fibrosis. Respir Care. 2019;64(9):1116-1122. doi:10.4187/respcare.06607
Havermans T, Colpaert K, Vanharen L, Dupont LJ. Health related quality of life in cystic fibrosis: to work or not to work. J Cyst Fibros. 2009;8(3):218-223. doi:10.1016/j.jcf.2009.03.002
2021 Patient Registry Annual Data Report (2021). https://www.cff.org/sites/default/files/2021-11/Patient-Registry-Annual-Data-Report.pdf
Public High School Graduation Rates. United States Department of Education National Center for Education Statistics, 2023.
Healthy People 2030. High School Graduation. United States Department of Health and Human Services.
Grieve AJ, Tluczek A, Racine-Gilles CN, Laxova A, Albers CA, Farrell PM. Associations between academic achievement and psychosocial variables in adolescents with cystic fibrosis. J Sch Health. 2011;81(11):713-720. doi:10.1111/j.1746-1561.2011.00648.x
Bowdy A, Hente E, Filigno SS, et al. Longitudinal assessment of educational risk for K-12 students with cystic fibrosis. J Pediatr. 2022;253:238-244.e3.
Cystic Fibrosis Foundation. A Teacher's Guide to Cystic Fibrosis. Accessed February 20, 2023. https://www.cff.org/intro-cf/teachers-guide-cystic-fibrosis
Gathercole K. Managing cystic fibrosis alongside children's schooling: family, nurse and teacher perspectives. J Child Health Care. 2019;23(3):425-436. doi:10.1177/1367493518814930
Lum A, Wakefield CE, Donnan B, Burns MA, Fardell JE, Marshall GM. Understanding the school experiences of children and adolescents with serious chronic illness: a systematic meta-review. Child Care Health Dev. 2017;43(5):645-662. doi:10.1111/cch.12475
Johns Hopkins Cystic Fibrosis Center. School and Work. Accessed February 20, 2023. https://hopkinscf.org/clinical-care/school-and-work/
UAMS. CF in School. Accessed February 20, 2023. https://medicine.uams.edu/pediatrics/specialties/sections/pulmonology/patient-care/cystic-fibrosis-center/cf-in-school/
CF Foundation. CF Care Centers. https://www.cff.org/managing-cf/care-centers
SurveyMonkey. 2022. https://www.surveymonkey.com
Uhm JY, Choi MY. Barriers to and facilitators of school health care for students with chronic disease as perceived by their parents: A mixed systematic review. Healthcare. 2020;8(4):506. doi:10.3390/healthcare8040506
Elam M, Murphy C, Irwin MK. Validity, reliability, and feasibility of the brief school needs inventory: evaluating educational risk for students with chronic health conditions. Psycho Oncol. 2019;28(7):1483-1489. doi:10.1002/pon.5104
Filigno SS, Miller J, Moore S, et al. Assessing psychosocial risk in pediatric cystic fibrosis. Pediatr Pulmonol. 2019;54(9):1391-1397. doi:10.1002/ppul.24414