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Participatory Development of a Modular Advance Care Planning Program in Pediatric Palliative Care (MAPPS)
Kathrin Knochel1, Vedrana Zaimovic1, Birga Gatzweiler1
1Center for Pediatric Palliative Care (K.K., V.Z., B.G., K.K.H., N.H., A.M., D.R., M.F.), Dr von Hauner Children's Hospital, University of Munich, Munich, Germany.
Insights
This study developed a flexible, modular pediatric advance care planning (ACP) program to support decision-making for children with life-limiting conditions, integrating family and professional needs. The program emphasizes quality of life and individualized communication throughout the care trajectory.
Area of Science:
- Pediatric Palliative Care
- Bioethics
- Health Services Research
Background:
- Decision-making in pediatric palliative care is complex, involving children lacking capacity, parental responsibilities, and family system dynamics.
- A standardized pediatric approach to advance care planning (ACP) is currently lacking.
- Existing ACP frameworks do not adequately address the unique needs of children and their families.
Purpose of the Study:
- To develop a pediatric ACP program (pedACP) tailored to the specific needs of children, parents, and healthcare professionals.
- To create a structured yet flexible framework for advance care planning in pediatric palliative care.
- To enhance shared decision-making and communication for children with life-limiting conditions.
Main Methods:
- Collaborative development involving bereaved parents of children with life-limiting conditions and pediatric ACP professionals.
- Utilized constellation analysis to define content, actors, tools, and timelines for pedACP.
- Iterative refinement of the pedACP program draft based on participant feedback.
Main Results:
- The developed pedACP program features a modular design with fixed and flexible components, focusing on children's quality of life and individualized interdisciplinary communication.
- Key themes include timing, communication strategies, child engagement, and structural considerations.
- Participants found the program comprehensive, flexible, and suitable for diverse patient and family needs.
Conclusions:
- The collaborative approach successfully integrated diverse perspectives to create a pediatric ACP program.
- The modular pedACP program is perceived as effective in addressing the complex needs of pediatric patients, families, and healthcare providers.
- This program offers a valuable tool for improving advance care planning in pediatric palliative care settings.
Context:
Decision-making in pediatric palliative care concerns mainly children without decision-making capacity. It has to balance the child's best interests, parental responsibility and the impact on the family system.
Objectives:
Advance care planning (ACP) supports decision making about future medical care. A consistent pediatric approach is still missing. This study aimed at developing a pediatric ACP program (pedACP) meeting specific needs of children, parents and professionals.
Methods:
Bereaved parents of children with life-limiting conditions and professionals involved in pedACP participated. Employing the technique of constellation analysis, they collaboratively assigned content, actors, tools and warning notes about pedACP along a timeline. The researchers analyzed, systematized and translated these results into a pedACP program draft, which was revised by the participants.
Results:
The participants' overall focus was on the children's quality of life and an individualized interdisciplinary communication process along the disease trajectory. The program was conceptualized in modular design with fixed modules at the beginning (to build a trustful relationship and frame the process) and at the end (to summarize results and prepare implementation). The main discussions are structured in flexible modules (About the child, Emergencies, Disease-specific scenarios and End of life care). General themes cover timing, communication, engaging children and structural issues. The participants appreciated the program's comprehensiveness and flexibility.
Conclusion:
Parents and professionals combined their perspectives on reflecting goals of care and the complexity of pedACP. They perceived the resulting modular program as suitable for meeting the individual needs of patients, families and professional stakeholders.
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