SynthesisPalliative medicine2023
Understanding parent experiences of end-of-life care for children: A systematic review and qualitative evidence synthesis.
Synthesis in Palliative medicine, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
25 citing papers in PubMed, 2 syntheses or guidelines pooled it, 37 citations in OpenAlex.
- Experiences of Family Caregivers of Children Aged 1-23 Months Who Have Received Pediatric Palliative Care: A Systematic Review With Qualitative Metasynthesis.Journal of nursing scholarship : an official publication of Sigma Theta Tau International Honor Society of Nursing · 2025Pooled it
- Parents' experiences of being involved in medical decision-making for their child with a life-limiting condition: A systematic review with narrative synthesis.Palliative medicine · 2024Pooled it
- Noticing and responding to end-of-life suffering in the PICU: A co-designed conceptual framework for nursing practice.Intensive & critical care nursing · 2026Article
- "Golden" moments and more in grief talk: Healthcare professionals' approaches to discussing loss and grief with parents of children with severe neurological impairment.Palliative medicine · 2026Article
- Japanese Version of the Quality of Dying and Death in the PICU Instrument: Development and Validation in Eight Centers in Japan.Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies · 2026Article
- Life-Sustaining Treatment Decisions and Parent Caregiving Experiences for Children With Medical Complexity.JAMA network open · 2026Article
- Interdisciplinary collaboration in pediatric palliative care: a qualitative study on barriers and facilitators as perceived by parents and healthcare professionals.European journal of pediatrics · 2026Article
- Moving toward meaningful shared decision-making in neonatal care: clinical practice and policy implications in Korea.Clinical and experimental pediatrics · 2026Article
- Understanding Why Parents Say Yes or No to Organ Donation When Their Child Dies: Mixed-Methods Study.Journal of advanced nursing · 2026Article
- Surgeon Perspectives on Cleft Lip and Palate Repair in Patients With Life-Limiting and Terminal Illnesses: An ACPA Member Survey.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2026Article
- Documented rituals in pediatric intensive care: a decade of sacramental and symbolic practices in a pluralistic clinical setting.BMC pediatrics · 2026Article
- Article
- "The American journal of hospice & palliative care · 2025Article
- "We're teetering on unsteady ground" parents' experiences of accessing 24/7 paediatric end-of-life care: a qualitative study.BMC palliative care · 2025Article
- Improving Intensive End-of-Life Care for Infants and Children: A Scoping Review of Intervention Elements.Children (Basel, Switzerland) · 2025Review
- Pediatric Palliative Care Patient Transfers of Location at End-of-Life: A 7-Year Retrospective Study.Healthcare (Basel, Switzerland) · 2025Article
- Parents' experiences of paediatric end-of-life care in the UK: a multisite qualitative study.BMJ supportive & palliative care · 2025Article
- Parents' experiences of the financial and employment impacts of their child receiving end-of-life care: a national qualitative study.BMC palliative care · 2025Article
- Nurturing compassion in neonatal end-of-life care: a qualitative exploration of palliative care nurses' roles and experiences.BMC nursing · 2025Article
- Paediatric Palliative Care in Clinical Practice: Ethical Issues in Advance Care Planning and End-of-Life Decisions.Journal of evaluation in clinical practice · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundAn estimated 21 million children worldwide would benefit from palliative care input and over 7 million die each year. For parents of these children this is an intensely emotional and painful time through which they will need support. There is a lack of synthesised research about how parents experience the care delivered to their child at the end of life.
aimTo systematically identify and synthesise qualitative research on parents' experiences of end-of-life care of their child.
designA qualitative evidence synthesis was conducted. The review protocol was registered in PROSPERO (CRD42021242946). DATA SOURCES: MEDLINE, EMBASE, CINAHL, PsycINFO and Web of Science databases were searched for qualitative studies published post-2000 to April 2020. Studies were appraised for methodological quality and data richness. Confidence in findings was assessed by GRADE-CERQual.
resultsAbout 95 studies met the eligibility criteria. A purposive sample of 25 studies was taken, of good-quality papers with rich data describing the experience of over 470 parents. There were two overarching themes: parents of children receiving end-of-life care experienced a profound need to fulfil the parental role; and care of the parent. Subthemes included establishing their role, maintaining identity, ultimate responsibility, reconstructing the parental role, and continuing parenting after death.
conclusionsServices delivering end-of-life care for children need to recognise the importance for parents of being able to fulfil their parental role and consider how they enable this. What the parental role consists of, and how it's expressed, differs for individuals. Guidance should acknowledge the need to enable parents to parent at their child's end of life.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
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.