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Advance care planning in pediatric palliative care: a pilot study

Not Applicable
Recruiting
Conditions
Advance Care Planning with children and adolescents with serious, progressive and life-limiting diseases.
Registration Number
DRKS00016866
Lead Sponsor
udwig-Maximilians-Universität (KöR)
Brief Summary

Not available

Detailed Description

Not available

Recruitment & Eligibility

Status
Recruiting
Sex
All
Target Recruitment
40
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 are insufficient language skills (interview language).

Study & Design

Study Type
interventional
Study Design
Not specified
Primary Outcome Measures
NameTimeMethod
Evaluation of the structured, pediatric Advance Care Planning intervention
Secondary Outcome Measures
NameTimeMethod
Evaluation of the intervention:<br><br>Time of measurement t0 (before intervention, baseline) <br>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<br>Outcome measure health care professionals: physician-parent-relationship, guiding discussions, disagreements , moral distress<br><br>Time of measurement t1 (during the intervention): participated observation of the interaction<br><br>Time of measurement t2 (immediately after the end of the intervention) <br>Outcome measures as t0<br>additionally for parents and health care professionals: Quality of communication<br> <br><br>Time of measurement t3 (6 months after the end of the intervention) <br>outcome measures as t0 <br>additionally for parents: decisional regret<br>additionally for stakeholders: implementation of pACP documents<br>
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