ArticleBMJ open2019
Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: a qualitative interview study.
Article in BMJ open, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 44 papers, 9 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
44 citing papers in PubMed, 9 syntheses or guidelines pooled it, 105 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
- Family Caregivers' Experiences of Services for Children With Medical Complexity: A Systematic Review and Qualitative Evidence Synthesis.Health expectations : an international journal of public participation in health care and health policy · 2025Pooled it
- Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review.BMC palliative care · 2025Pooled it
- The needs of family members of people with severe or profound intellectual disabilities when collaborating with healthcare professionals: a systematic review.Journal of intellectual disability research : JIDR · 2025Pooled 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
- The elements of end-of-life care provision in paediatric intensive care units: a systematic integrative review.BMC palliative care · 2024Pooled 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
- Experiences of fathers of children with a life-limiting condition: a systematic review and qualitative synthesis.BMJ supportive & palliative care · 2023Pooled it
- Understanding parent experiences of end-of-life care for children: A systematic review and qualitative evidence synthesis.Palliative medicine · 2023Pooled it
- Parents Value Shared Decision-Making and Sensitive Communication During End-of-Life Care in Neonatal Intensive Care: An Exploratory Study.Acta paediatrica (Oslo, Norway : 1992) · 2026Observational
- Life-Sustaining Treatment Decisions and Parent Caregiving Experiences for Children With Medical Complexity.JAMA network open · 2026Article
- Nurses' experiences of end-of-life communication with children who have life-threatening conditions in paediatric intensive care units: a qualitative descriptive study.BMC palliative care · 2026Article
- 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
- Identifying the pathways to increased death literacy: Building a conceptual causal model through a mixed-methods pragmatic ESC-DAGs approach.Palliative care and social practice · 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
- Parental Self-Efficacy in Managing Pediatrics' Medications and Treatments in Jordan: A Cross-Sectional Study.Healthcare (Basel, Switzerland) · 2025Article
- Forging an easier path through graduation: Improving the patient transition from paediatric to adult critical care.World journal of critical care medicine · 2025Review
- Challenges in Clinical Decision-Making for Nurses in Neonatal Intensive Care Unit (NICU): A Qualitative Study.Critical care research and practice · 2025Article
- Children's complex health: Maternal experiences of care and decision making.Journal of child health care : for professionals working with children in the hospital and community · 2024Article
- Goals of care conversations and advance care planning for paediatric patients living with serious illness.Paediatrics & child health · 2024Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 3 institutions in 1 country.
Funding
Abstract
objectivesTo provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU).
designAn in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on the interview transcripts.
settingA PICU in a large National Health Service (NHS) tertiary children's hospital in the West Midlands, UK.
participants17 parents of 11 children who had died in the PICU.
resultsFive interconnected themes were identified related to end of life care decision-making:(1) parents have significant knowledge and experiences that influence the decision-making process.(2) Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions.(3) Verbal and non-verbal communication with healthcare professionals impacts on the family experience.(4) Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a 'place of acceptance'.(5) Families perceive benefits to receiving end of life care for their child in a PICU. CONCLUSIONS AND IMPLICATIONS: The death of a child is an intensely emotional experience for all involved. This study adds to the limited evidence base related to parental experiences of end of life care decision-making and provides findings that have international relevance, particularly related to place of care and introduction of end of life care discussions. The expertise and previous experience of parents is highly relevant and should be acknowledged. End of life care decision-making is a complex and nuanced process; the information needs and preferences of each family are individual and need to be understood by the professionals involved in their care.
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.