ArticleBMC medical ethics2022
Decision-making approaches for children with life-limiting conditions: results from a qualitative phenomenological study.
Article in BMC medical ethics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
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Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Exploring the experiences of neonatal parents for neonatal palliative care: a meta-synthesis of qualitative research.BMC palliative care · 2025Pooled it
- Moving toward meaningful shared decision-making in neonatal care: clinical practice and policy implications in Korea.Clinical and experimental pediatrics · 2026Article
- Paediatric Palliative Care in Clinical Practice: Ethical Issues in Advance Care Planning and End-of-Life Decisions.Journal of evaluation in clinical practice · 2025Article
- Exploring communication preferences and risk thresholds of clinicians and parents of febrile infants under 90 days presenting to the emergency department: a qualitative study.Archives of disease in childhood · 2024Article
- Article
- A shared decision-making model in pediatric palliative care: a qualitative study of healthcare providers.BMC palliative care · 2023Article
- Shared decision-making for children with medical complexity in community health services: a scoping review.BMJ paediatrics open · 2023Article
- Physician-reported characteristics, representations, and ethical justifications of shared decision-making practices in the care of paediatric patients with prolonged disorders of consciousness.BMC medical ethics · 2023Article
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4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundFor children with life-limiting conditions who are unable to participate in decision-making, decisions are made for them by their parents and paediatricians. Shared decision-making is widely recommended in paediatric clinical care, with parents preferring a collaborative approach in the care of their child. Despite the increasing emphasis to adopt this approach, little is known about the roles and responsibilities taken by parents and paediatricians in this process. In this study, we describe how paediatricians approach decision-making for a child with a life-limiting condition who is unable to participate in decision-making for his/herself.
methodsThis qualitative phenomenological study involved 25 purposively sampled paediatricians. Verbatim transcripts from individual semi-structured interviews, conducted between mid-2019 and mid-2020, underwent thematic analysis. Interviews were based around a case vignette matched to the clinical experience of each paediatrician.
resultsTwo key themes were identified in the exploration of paediatricians' approach to decision-making for children with life-limiting conditions: (1) there is a spectrum of paediatricians' roles and responsibilities in decision-making, and (2) the specific influences on paediatricians' choice of approach for end-of-life decisions. In relation to (1), analysis showed four distinct approaches: (i) non-directed, (ii) joint, (iii) interpretative, and (iv) directed. In relation to (2), the common factors were: (i) harm to the child, (ii) possible psychological harm to parents, (iii) parental preferences in decision-making, and (iv) resource allocation.
conclusionsDespite self-reporting shared decision-making practices, what paediatricians often described were physician-led decision-making approaches. Adopting these approaches was predominantly justified by paediatricians' considerations of harm to the child and parents. Further research is needed to elucidate the issues identified in this study, particularly the communication within and parental responses to physician-led approaches. We also need to further study how parental needs are identified in family-led decision-making approaches. These nuances and complexities are needed for future practice guidance and training around paediatric decision-making.
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