Abstract
ContextDecision-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. ObjectivesAdvance 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. MethodsBereaved 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. ResultsThe 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. ConclusionParents 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.
Highlights
Decision-making about treatment for children with life-limiting conditions is challenging
Parents and health care professionals regularly express their uncertainty about the right time, the content and the implementation of pediatric Advance care planning (ACP).[5,6,11,12]
This paper reports the development of a pediatric ACP (pedACP) program, using a participatory research process to meet the specific needs of children, parents and professionals
Summary
Decision-making about treatment for children with life-limiting conditions is challenging. Parents and families of children with life-limiting diseases value having the chance to discuss end-of-life topics, to explore concerns, to express their preferences and to make preparations.[5−9] In contrast to adult surrogates, parents have simultaneously the roles of parental decision makers, affected persons and in general the main caregivers.[8,10] Parents and health care professionals regularly express their uncertainty about the right time, the content and the implementation of pediatric ACP (pedACP).[5,6,11,12] Major challenges are prognostic uncertainty, ambivalence of parents and professionals regarding pedACP, as well as the deep emotional impact of decision-making for children at the end of life.[7,13−15]
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