ArticleBMC palliative care2016
"It still haunts me whether we did the right thing": a qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers.
Article in BMC palliative care, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 33 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
33 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- The impacts and effectiveness of support for people bereaved through advanced illness: A systematic review and thematic synthesis.Palliative medicine · 2020Pooled it
- The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review.Palliative medicine · 2020Pooled it
- Pre- and post-bereavement experiences and support needs of family caregivers in hospital settings in Türkiye: a qualitative interview study.BMC palliative care · 2026Article
- Caregiving needs of patients with terminal cancer and their families: a field study of family meetings.BMC palliative care · 2026Article
- 'I'm tired of justifying why my life has stopped': A qualitative analysis of the experiences and support needs of young people caring at the end of life and into bereavement.Palliative care and social practice · 2026Article
- A qualitative exploration of the impact of healthcare pre- and post-death on bereavement experiences.Palliative & supportive care · 2025Article
- Participants' Perceptions of Advantages and Drawbacks of "Drop-In" Versus "Closed-Group" Formats Related to Cancer Bereavement Program Delivery.Current oncology (Toronto, Ont.) · 2025Article
- A qualitative study of conflict experiences of Chinese physicians and nurses experiencing death of relatives: effects of dual roles.Frontiers in psychiatry · 2025Article
- Multiple points of system failure underpin continuous subcutaneous infusion safety incidents in palliative care: A mixed methods analysis.Palliative medicine · 2025Article
- What functions do palliative care bereavement services deliver? A scoping review.Palliative care and social practice · 2025Review
- 'Beyond the Reach of Palliative Care': A Qualitative Study of Patient and Public Experiences and Anticipation of Death and Dying.Qualitative health research · 2024Article
- The CAREPAL-8: a short screening tool for multidimensional family caregiver burden in palliative care.BMC palliative care · 2024Article
- Narrating Final Memories From Spousal Loss: The Role of Place and Quality of Death.The American journal of hospice & palliative care · 2024Article
- Resources to Support Decision-Making Regarding End-of-Life Nutrition Care in Long-Term Care: A Scoping Review.Nutrients · 2024Article
- "Being an informal caregiver - strengthening resources": mixed methods evaluation of a psychoeducational intervention supporting informal caregivers in palliative care.BMC palliative care · 2024Article
- A qualitative exploration of the dynamics of guilt experience in family cancer caregivers.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2023Article
- Prolonged grief during and beyond the pandemic: factors associated with levels of grief in a four time-point longitudinal survey of people bereaved in the first year of the COVID-19 pandemic.Frontiers in public health · 2023Article
- Are you tripping comfortably? Investigating the relationship between harm reduction and the psychedelic experience.Harm reduction journal · 2022Article
- Caregiver bereavement outcomes in advanced cancer: associations with quality of death and patient age.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2022Article
- Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic.Palliative medicine · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
backgroundResearch suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC.
methodsThe priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public.
resultsSeveral grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a "void" created by the withdrawal of professional support after death. Communication and support needs were also identified by participants.
conclusionThis analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues.
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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.