Any chronic health condition leading to increased health care needs in children and adolescents.
Conditions
Interventions
Group 1: PedSupport is a non-interventional mixed-methods study consisting of five components:
1) prospective longitudinal (cohort) survey of parents 0, 6, and 12 months after their child has been dia
Sponsors
Heinrich-Heine-Universität Düsseldorf/ Universitätsklinikum Düsseldorf
Eligibility
Sex/Gender
All
Age
No minimum to 16 Years
Inclusion criteria
Inclusion criteria: • Parents of children aged 0 to 16 years diagnosed with a chronic health care condition within six weeks of diagnosis, or within four weeks after birth for prenatal or perinatal diagnoses (initial diagnosis – ID). • Children with physical and/or mental health conditions that are likely to lead to increased health care utilization and/or participation restrictions. • A completed and signed online informed consent (EWE) for participation in online surveys at three time points following the informed decision. • Children aged 10 years and older, with their own consent.
Exclusion criteria
Exclusion criteria: • Children with oncological conditions. • Children whose conditions require only regular medication intake (e.g., latent hypothyroidism), without anticipated additional participation restrictions. • Parents of children already enrolled in an intervention study at the recruiting clinic. • Parents who have not provided consent to participate in the study.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Parental stress, measured via the PSQ-20, serves as the primary endpoint. | — |
Secondary
| Measure | Time frame |
|---|---|
| Secondary outcomes include care satisfaction, quality of life, parental health literacy, coping mechanisms, and social support. | — |
Countries
Germany
Contacts
Public ContactJenny Prüfe
Heinrich-Heine-Universität/ Universitätsklinikum Düsseldorf
Outcome results
None listed