children, adolescents and young adults with life limiting conditions, no matter of the underlying disease
Conditions
Interventions
Group 1: Evaluation of EAPC-recommendations from the perspective of close relatives/family caregivers and pediatric patients' own view:
We will develop a questionnaire based on the EAPC-recommendation
Sponsors
Fachverband SAPV Hessen e.V.
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: • Signed informed consent form; in case of minors or patients unable to give consent: (additionally) signed informed consent form by child’s custody (usually both parents) • Patients: age = 27 years • family caregivers, child’s custody, close relatives (second or third degree of kinship, e.g. siblings) or close caregivers without family relationship of a pediatric patient receiving SAPV • Professional caregivers and their cooperation partners due to the German law (§ 132d SGB V) • SAPV service was not provided before 01/01/2015 • SAPV service provision takes/took place in Hesse
Exclusion criteria
Exclusion criteria: • no signed informed consent form • lack of German language skills • Patients: age > 27
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| This study (WP 2) tend to provide valuable knowledge about the special needs of pediatric patients receiving specialized outpatient palliative care in contrast to adult patients. The needs assessment will be evaluate from the perspective of their close relatives/family caregivers and their professional caregivers and, as far as possible, from their own perspective. The results should help concretizing the SAPV guideline with regard to special needs of children, children, adolescents and young adults with life limiting conditions. | — |
Countries
Germany
Contacts
Public ContactLisa Ulrich, MPH
Institut für Allgemeinmedizin, Goethe-Universität Frankfurt am Main
Outcome results
None listed