SynthesisPalliative medicine2024
Parents' experiences of being involved in medical decision-making for their child with a life-limiting condition: A systematic review with narrative synthesis.
Synthesis in Palliative medicine, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 2 of them syntheses that pooled it.
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Who cites it
10 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Parental awareness, attitudes and decision-making of off-label use in children: a systematic review and meta-analysis.BMJ paediatrics open · 2026Pooled it
- Exploring the experiences of neonatal parents for neonatal palliative care: a meta-synthesis of qualitative research.BMC palliative care · 2025Pooled it
- Healthcare provider's perceptions of family values when making end-of-life care decisions for their children: developing and implementing a survey tool.Palliative care and social practice · 2026Article
- Nurses' perspectives on emergency room healthcare constraints in implementing family-centered care: A qualitative study in Indonesia.Belitung nursing journal · 2026Article
- Bereaved parents' perspectives of factors influencing decision-making about place of end-of-life care for children with life-limiting, life-threatening conditions: an all-Ireland qualitative study.BMC palliative care · 2025Article
- Personalizing ICU liberation for critically Ill children: shaping the future of the ABCDEF bundle.Current opinion in pediatrics · 2025Review
- Hoping Against Hope: Ethical Considerations when Trying Unproven Treatments for Seriously Ill Children.Asian bioethics review · 2025Article
- Exploring Distinct Profiles in Paediatric Bioethics-An Analysis of Proactive and Reactive Approaches by Adults.Children (Basel, Switzerland) · 2025Article
- A network analysis of timing and conditions present at time of death for periviable infants (22+0-23+6 weeks) admitted to neonatal intensive care after receiving survival-focused care at birth.Frontiers in pediatrics · 2025Article
- Article
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundParental involvement in the decision-making processes about medical treatment for children with life-limiting conditions is recognised as good practice. Previous research highlighted factors affecting the decision-making process, but little is known about how parents experience their participation.
aimTo explore how parents experience their participation in the process of decision-making about treatment and future care for their children with life-limiting conditions.
designA systematically constructed review using narrative synthesis. The PRISMA guidelines were followed to report the findings. Databases Medline, EMBASE, SCOPUS, CINAHL and PsycINFO were searched up to December 2023. The study protocol was registered at PROSPERO (RN CRD42021215863).
resultsFrom the initial 2512 citations identified, 28 papers met the inclusion criteria and were included in the review. A wide range of medical decisions was identified; stopping general or life-sustaining treatment was most frequent. Narrative synthesis revealed six themes: (1) Temporal aspects affecting the experience with decision-making; (2) Losing control of the situation; (3) Transferring the power to decide to doctors; (4) To be a 'good' parent and protect the child; (5) The emotional state of parents and (6) Sources of support to alleviate the parental experience.
conclusionsParental experiences with decision-making are complex and multifactorial. Parents' ability to effectively participate in the process is limited, as they are not empowered to do so and the circumstances in which the decisions are taking place are challenging. Healthcare professionals need to support parental involvement in an effective way instead of just formally asking them to participate.
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Registered trials
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