ArticleBMC palliative care2018
Bereaved parents' experiences of research participation.
Article in BMC palliative care, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 1 of them a synthesis 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
24 citing papers in PubMed, 1 synthesis or guideline pooled it, 55 citations in OpenAlex.
- 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
- 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
- Pre- and post-bereavement experiences and support needs of family caregivers in hospital settings in Türkiye: a qualitative interview study.BMC palliative care · 2026Article
- What are fathers' experiences of neonatal-perinatal palliative care? A Scoping review.BMC palliative care · 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
- "We're teetering on unsteady ground" parents' experiences of accessing 24/7 paediatric end-of-life care: a qualitative study.BMC 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
- Hospitalization- and death-related financial and employment effects in parents of children with life-limiting conditions: a fixed-effects analysis.European journal of pediatrics · 2024Article
- "They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions.Palliative medicine · 2023Article
- Developing a Core Outcome Set for Prognostic Research in Palliative Cancer Care: Protocol for a Mixed Methods Study.JMIR research protocols · 2023Article
- Article
- Bereaved parents involvement in maternity hospital perinatal death review processes: 'Nobody even thought to ask us anything'.Health expectations : an international journal of public participation in health care and health policy · 2023Review
- "Your heart keeps bleeding": lived experiences of parents with a perinatal death in Northern Uganda.BMC pregnancy and childbirth · 2022Article
- End of life care for infants, children and young people (ENHANCE): Protocol for a mixed methods evaluation of current practice in the United Kingdom [version 1; peer review: 2 approved].NIHR open research · 2022Article
- Long-distance caregiving at the end of life: a protocol for an exploratory qualitative study in Germany.BMC palliative care · 2022Article
- The Reactions of Adolescents, Parents and Clinicians to Participating in Qualitative Research Interviews Regarding Adolescents Bereaved by Suicide and Other Traumatic Death.International journal of environmental research and public health · 2022Article
- A good death in the child with life shortening illness: A qualitative multiple-case study.Palliative medicine · 2021Article
- "It Can Be Hard But It's Not Bad": Three Questions to Solicit Caregiver Perceptions of Benefits and Burdens to Participating in Pediatric Palliative Care Research.Journal of palliative medicine · 2021Article
- Measuring quality of life in life-threatening illness - content validity and response processes of MQOL-E and QOLLTI-F in Swedish patients and family carers.BMC palliative care · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 3 institutions in 3 countries.
Funding
Abstract
backgroundAs understandings of the impacts of end-of-life experiences on parents' grief and bereavement increase, so too does the inclusion of bereaved parents into research studies exploring these experiences. However, designing and obtaining approval for these studies can be difficult, as guidance derived from bereaved parents' experiences of the research process are limited within the current literature.
methodsWe aimed to explore bereaved parents' experiences of research participation in a larger grounded theory study exploring experiences of the death of a child in the paediatric intensive care unit. Data were obtained during follow-up phone calls made to 19 bereaved parents, five of whom provided data from their spouse, 1 week after their participation in the study. Participants were asked to reflect on their experiences of research participation, with a focus on recruitment methods, timing of research contact, and the location of their interview. Parents' responses were analysed using descriptive content analysis.
resultsOur findings demonstrate that despite being emotionally difficult, parents' overall experiences of research participation were positive. Parents preferred to be contacted initially via a letter, with an opt in approach viewed most favourably. Most commonly, participants preferred that research contact occurred within 12-24 months after their child's death, with some suggesting contact after 6 months was also appropriate. Parents also preferred research interviews conducted in their own homes, though flexibility and parental choice was crucial.
conclusionsFindings from this study offer further insight to researchers and research review committees, to help ensure that future studies are conducted in a way that best meets the unique needs of bereaved parents participating in research.
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.