دورية أكاديمية
أعرض في EDS

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

التفاصيل البيبلوغرافية
العنوان: Education-related needs for children with cystic fibrosis: Perspectives of US pediatric care teams.
المؤلفون: Hjelm M; Division of Pulmonary Medicine, Cincinnati Children's Hospital Medical Center (CCHMC), Cincinnati, Ohio, USA.; Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA., Hente E; Division of Pulmonary Medicine, Cincinnati Children's Hospital Medical Center (CCHMC), Cincinnati, Ohio, USA., Schuler CL; Division of Pulmonary Medicine, Cincinnati Children's Hospital Medical Center (CCHMC), Cincinnati, Ohio, USA.; Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.; Division of Hospital Medicine, Cincinnati Children's Hospital Medical Center (CCHMC), Cincinnati, Ohio, USA., Duan Q; Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center (CCHMC), Cincinnati, Ohio, USA., Strong S; Division of Pulmonary Medicine, Cincinnati Children's Hospital Medical Center (CCHMC), Cincinnati, Ohio, USA.; Center for School Services and Educational Research, Cincinnati Children's Hospital Medical Center (CCHMC), Cincinnati, Ohio, USA., Boat T; Division of Pulmonary Medicine, Cincinnati Children's Hospital Medical Center (CCHMC), Cincinnati, Ohio, USA.; Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA., Filigno S; Division of Pulmonary Medicine, Cincinnati Children's Hospital Medical Center (CCHMC), Cincinnati, Ohio, USA.; Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.; Division of Behavioral Medicine and Clinical Psychology, Center for School Services and Educational Research, Cincinnati Children's Hospital Medical Center (CCHMC), Cincinnati, Ohio, USA.
المصدر: Pediatric pulmonology [Pediatr Pulmonol] 2024 Jan; Vol. 59 (1), pp. 95-100. Date of Electronic Publication: 2023 Oct 05.
نوع المنشور: Journal Article
اللغة: English
بيانات الدورية: Publisher: Wiley-Liss Country of Publication: United States NLM ID: 8510590 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1099-0496 (Electronic) Linking ISSN: 10990496 NLM ISO Abbreviation: Pediatr Pulmonol Subsets: MEDLINE
أسماء مطبوعة: Publication: <2005-> : Hoboken, NJ : Wiley-Liss
Original Publication: [Philadelphia, PA] : W.B. Saunders, [c1985-
مواضيع طبية MeSH: Cystic Fibrosis*/therapy, Humans ; Child ; United States ; Schools ; Surveys and Questionnaires ; Students ; Patient Care Team
مستخلص: Objective: 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.
Methods: 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.
Results: 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%).
Conclusion: 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.
(© 2023 Wiley Periodicals LLC.)
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معلومات مُعتمدة: BOAT21Q10 Cystic Fibrosis Foundation
فهرسة مساهمة: Keywords: cystic fibrosis; education; program development
تواريخ الأحداث: Date Created: 20231005 Date Completed: 20231216 Latest Revision: 20231216
رمز التحديث: 20231217
DOI: 10.1002/ppul.26716
PMID: 37796090
قاعدة البيانات: MEDLINE
الوصف
تدمد:1099-0496
DOI:10.1002/ppul.26716