ArticlePalliative medicine2020
Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study.
Article in Palliative medicine, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 33 papers, 3 of them syntheses that pooled it.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
33 citing papers in PubMed, 3 syntheses or guidelines pooled it, 75 citations in OpenAlex.
- Parental experiences in pediatric advance care planning for children with life-limiting illnesses: a qualitative meta-synthesis.BMC palliative care · 2026Pooled it
- A Dutch paediatric palliative care guideline: a systematic review and recommendations on advance care planning and shared decision-making.BMC palliative care · 2024Pooled it
- Factors associated with health professionals decision to initiate paediatric advance care planning: A systematic integrative review.Palliative medicine · 2021Pooled it
- Influence of pediatric advance care planning on the secondary outcomes of the BOOST pACP trial: determinants of communication between parents and adolescents with cancer.European journal of pediatrics · 2025Trial
- Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences: A Randomized Clinical Trial.JAMA network open · 2022Trial
- An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial.Pediatrics · 2022Trial
- The BOOST paediatric advance care planning intervention for adolescents with cancer and their parents: development, acceptability and feasibility.BMC pediatrics · 2022Trial
- Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT.Pediatrics · 2021Trial
- Parental Goals of Care for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Planning Conversations.The American journal of hospice & palliative care · 2026Article
- Planting seeds for seasons ahead: Communication strategies for prognostic disclosure in pediatric neuro-oncology.Neuro-oncology practice · 2026Article
- Experiences with an Advance Care Planning Intervention for Children with Life-Limiting Conditions: A Qualitative Study of Families and Clinicians Using the IMplementing Pediatric Advance Care Planning Toolkit.Children (Basel, Switzerland) · 2026Article
- Pediatric advance care planning: a mixed-methods evaluation of documentation and sharing in current practice.BMC palliative care · 2026Article
- Article
- "The American journal of hospice & palliative care · 2025Article
- Palliative Care for Children and Adults With Inherited Metabolic Disease in Europe: An Underutilised Service for Supportive Treatment and Care.Journal of inherited metabolic disease · 2025Article
- Barriers and facilitators of pain management in children: a scoping review.BMC anesthesiology · 2025Article
- Goals of care conversations and advance care planning for paediatric patients living with serious illness.Paediatrics & child health · 2024Review
- Les objectifs des échanges sur les soins et de la planification préalable des soins chez les patients d'âge pédiatrique atteints d'une maladie grave.Paediatrics & child health · 2024Review
- The Practical Application of the Individual Care Plan for Pediatric Palliative Care: A Mixed-Method Study.Children (Basel, Switzerland) · 2024Article
- Palliative care for children: methodology for the development of a national clinical practice guideline.BMC palliative care · 2023Review
Corrections and comments
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Authors and funding
8 authors at 2 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAlthough 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.
aimThe study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties.
designThe 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/
participantsWe included bereaved parents, health care providers and stakeholders of care networks.
resultsKey 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.
conclusionA 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.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.