Patient education for children with interstitial lung diseases and their caregivers: A pilot study

Niemitz, Mandy; Schrader, Miriam; Carlens, Julia; Hengst, Meike; Eismann, Claudia; Goldbeck, Lutz; Griese, Matthias und Schwerk, Nicolaus (2019): Patient education for children with interstitial lung diseases and their caregivers: A pilot study. In: Patient Education and Counseling, Bd. 102, Nr. 6: S. 1131-1139

Abstract

Objective: Patient education in children with rare chronic diseases like children's interstitial lung disease (chILD) remains a challenge. Aims: To develop and evaluate a component-based educational program for individual counselling and to improve patients' and caregivers' self-efficacy and treatment satisfaction. Furthermore, to create chILD-specific educational material and assess physicians' satisfaction with the intervention as well as patients' health-related quality of life (HrQoL). Methods: The study was conducted in two German centers for pediatric pulmonology, as a single-group intervention with pre-post-follow-up design. Results: Participants (N=107, age: M=7.67, SD= 5.90) showed significant improvement of self-efficacy (self-report: t = 2.89, p < 0.01;proxy-report: t=3.03, p < 0.01), and satisfaction (patients: t=3.56, p = 0.001;parents t= 6.38, p < 0.001) with the medical consultations. There were no pre-post differences in HrQoL. Participants were highly satisfied with the material and the physicians with the program. Conclusions: The chILD education-program is a promising strategy to improve patients' and their parents' self-efficacy and treatment-satisfaction. Specific effects of the intervention need to be determined in a randomized controlled trial. Practice implication: Healthcare providers managing pediatric patients with chILD, may choose to use a patient education-program specifically tailored to the needs of chILD patients and their families, such as the program described here, which is the first of its kind. (C) 2019 Elsevier B.V. All rights reserved.

• Dokumententyp: Zeitschriftenartikel
• Fakultät: Medizin
• Themengebiete: 600 Technik, Medizin, angewandte Wissenschaften > 610 Medizin und Gesundheit
• ISSN: 0738-3991
• Sprache: Englisch