Title

Qualitative study about experiences with (medical) monitoring and imaging by children with lung diseases and their caregivers

Leading partner

Tilburg University

Work Package

WP4

Sites

Erasmus MC-Sophia Children’s Hospital, Rotterdam, the Netherlands

Population

90 children (45 girls and 45 boys) with CF, COPD and asthma, aged 8-18, together with their respective care givers.

Objectives

1. Assess how children cope with and monitor their lung disease
2. Explore how children imagine themselves and their lungs in creative/artistic output
3. Understand how children and their caregivers experience the clinical monitoring procedures, and how it informs sense-making
4. Explore how caregivers assess potential risks of the clinical monitoring procedures
5. Explore how (the design of) monitoring/imaging technologies might be improved

Procedure

Children and their caregivers will be at the Erasmus MC-Sophia to undergo CT, spirometry and 3D MR spirometry, as part of the clinical study titled ADVANCER. In between the clinical examinations, a postdoc researcher or designated health specialist will take the survey with the child and their caregivers. The survey employs Likert-scale questions, open questions and a creative drawing assignment.