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. 2020 Mar;34(3):300-308.
doi: 10.1177/0269216319900317. Epub 2020 Jan 27.

Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study

Kerstin Hein  1 , Kathrin Knochel  1 , Vedrana Zaimovic  1 , Daniel Reimann  1 , Anna Monz  1 , Nari Heitkamp  1 , Gian Domenico Borasio  2 , Monika Führer  1
Affiliations

Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study

Kerstin Hein et al. Palliat Med. 2020 Mar.

Abstract

Background: Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning.

Aim: The study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties.

Design: The study had a qualitative design with a participatory approach. Participants constituted an advisory board and took part in two transdisciplinary workshops. Data were collected in discussion and dialogue groups and analysed using content analysis.

Setting/participants: We included bereaved parents, health care providers and stakeholders of care networks.

Results: Key elements were discussions, documentation, implementation, timing and participation of children and adolescents. Parents engage in discussions with facilitators and persons of trust to reach a decision. Documentation constitutes the focus of professionals, who endorse brief recommendations for procedures in case of emergencies, supplemented by larger advance directives. Implementation hindrances include emotional barriers of stakeholders, disagreements between parents and professionals and difficulties with emergency services. Discussion timing should take into account parental readiness. The intervention should be repeated at regular intervals, considering emerging needs and increasing awareness of families over time. Involving children and adolescents in advance care planning remains a challenge.

Conclusion: A paediatric advance care planning intervention should take into account potential pitfalls and barriers including issues related to timing, potential conflicts between parents and professionals, ambiguity towards written advance directives, the role of non-medical carers for paediatric advance care planning implementation, the need to involve the child and the necessity of an iterative process.

Keywords: Advance care planning; advance directives; decision-making; paediatrics; palliative care.

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Conflict of interest statement

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

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