SynthesisHealth expectations : an international journal of public participation in health care and health policy2024
Patient and Public Involvement Work With Parents of Children With Life-Limiting Conditions and Bereaved Parents: A Rapid Systematic Review.
Synthesis in Health expectations : an international journal of public participation in health care and health policy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 3 papers.
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
3 citing papers in PubMed.
- Comfort, benefit, and distress: An exploratory study of research experiences of bereaved parents in the neonatal intensive care unit.Journal of perinatology : official journal of the California Perinatal Association · 2026Article
- Bereavement Groups for Parents Who Have Lost a Child: A Qualitative Study of Parental Experiences in a Danish Context.Scandinavian journal of caring sciences · 2026Article
- Engaging Children and Young People in Pediatric Palliative Care Research: A Scoping Review Protocol of Patient and Public Involvement Practices.HRB open research · 2025Article
Corrections and comments
- Erratum issued
Authors and funding
5 authors.
Funding
Abstract
backgroundGuidance and principles for involving the public in research or service planning exist but are not specific to the needs of parents of children with life-limiting conditions or bereaved parents.
aimReview the evidence on involving parents of children with life-limiting conditions and bereaved parents in research, service planning and advocacy, and use this to develop best practice guidance.
methodsRapid review following the Cochrane Rapid Reviews Methods Group Guidance. MEDLINE and EMBASE were searched for primary studies of any design and literature/systematic reviews, and grey literature searching was conducted. Sources reporting on involving parents of children with life-limiting conditions or bereaved parents in healthcare, research, or charity work in any setting, were included. Data were charted using the UK standards for public involvement in research (PPI). Two PPI consultation workshops were conducted with parents (n = 13) and healthcare professionals/charity representatives (n = 7).
resultsSix sources were included. Four reported benefits of parental involvement and two reported burdens. In relation to best practice, two reported on the importance of inclusive opportunities, three on working together, four on support and learning, three on communications, one on impact, and one on governance. PPI consultation workshops highlighted new factors which were not present in the literature around communication and understanding the impact of involvement.
conclusionOrganisations working with this group should consider offering inclusive approaches to improve diversity, levelling power imbalances, ensuring flexibility of approach, and appropriate communication and impact. PATIENT OR PUBLIC CONTRIBUTION: The study was conducted in collaboration with 13 parents of children with life-limiting conditions and bereaved parents, and seven palliative care professionals. The group were involved at key stages of the review and contributed to the development of the findings and conduct of the review.
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.