ArticleBMJ open2020
My child's legacy: a mixed methods study of bereaved parents and providers' opinions about collaboration with NICU teams in quality improvement initiatives.
Article in BMJ open, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers, 2 of them syntheses that pooled it.
What it found
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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
7 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Patient and Public Involvement Work With Parents of Children With Life-Limiting Conditions and Bereaved Parents: A Rapid Systematic Review.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- Considerations for Practice in Supporting Parental Bereavement in the Neonatal Intensive Care Unit-a Systematic Review.Journal of palliative care · 2024Pooled it
- Optimistic vs Pessimistic Message Framing in Communicating Prognosis to Parents of Very Preterm Infants: The COPE Randomized Clinical Trial.JAMA network open · 2024Trial
- 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
- Article
- Parental perspectives about information and deferred versus two-stage consent in studies of neonatal asphyxia.Archives of disease in childhood. Fetal and neonatal edition · 2023Article
- Parents' Views on Autopsy, Organ Donation, and Research Donation After Neonatal Death.JAMA network open · 2023Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveAlthough stakeholders' participation in healthcare is increasingly recommended, bereaved parents are often excluded for perceived potential risks to them. The objective of this study is to describe the ongoing involvement and the perspectives of bereaved parents engaged in different types of activities in Neonatal Intensive Care Units and providers who work with them. DESIGN/
methodsMixed methods convergent analysis.
settingCanadian paediatric tertiary care university hospital.
participantsAll bereaved members of the resource parents group (n=8) and most providers who work with them (n=16) answered a satisfaction/needs questionnaires.
resultsSince 2011, eight bereaved parents were involved in a large number of activities mostly related to palliative care (research, education or clinical care initiatives). Three engaged in peer-to-peer support activities while the others preferred activities outside of clinical units and/or without direct interactions with other families. All of them reported that their participation had positive impacts, but two parents also reported a reactivation of traumatic experiences during a medical simulation activity. All participants expressed a desire for further collaboration. Motivation to contribute gravitated around two central themes: helping others and helping themselves. Many wanted to give back, help other families, improve the system and meet with providers who had cared for their child. All stated that this kind of involvement empowered them and gave meaning to their experiences. Providers and researchers all reported positive experiences, mainly due to the unique perspectives of bereaved parents who took part in their projects.
conclusionsWith careful recruitment and supervision, some bereaved parents can become resource parents involved in different types of activities. It is important to understand the positive impacts this type of engagement can have on their healing process and to control the risks related to their participation. Research is needed to develop pertinent tools and measures to evaluate the outcomes and impacts of their participation.
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Registered trials
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