Advance Care Planning with children and adolescents with serious, progressive and life-limiting diseases.
Conditions
Interventions
Group 1: Piloting the structured pediatrc Advance Care Planning intervention.
Sponsors
Ludwig-Maximilians-Universität (KöR)
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Families within the care of the Kinderpalliativzentrum München and which take part in Advance Care Planning discussion are included. Families have to give written informed consent to participation in the study.
Exclusion criteria
Exclusion criteria: Exclusion criteria are insufficient language skills (interview language).
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Evaluation of the structured, pediatric Advance Care Planning intervention | — |
Secondary
| Measure | Time frame |
|---|---|
| Evaluation of the intervention: Time of measurement t0 (before intervention, baseline) outcome measures parents: Quality of life of the parents, quality of life of the child, decisional conflict, self efficacy, depression, anxiety, trust in medical and non-medical staff Outcome measure health care professionals: physician-parent-relationship, guiding discussions, disagreements , moral distress Time of measurement t1 (during the intervention): participated observation of the interaction Time of measurement t2 (immediately after the end of the intervention) Outcome measures as t0 additionally for parents and health care professionals: Quality of communication Time of measurement t3 (6 months after the end of the intervention) outcome measures as t0 additionally for parents: decisional regret additionally for stakeholders: implementation of pACP documents | — |
Countries
Germany
Contacts
Public ContactAnna Monz
Kinderpalliativzentrum Dr. von Haunersches Kinderspital Klinikum der Universität München
Outcome results
None listed