ArticleJournal of pain and symptom management2021
Associations Between Hospice Care and Scary Family Caregiver Experiences.
Article in Journal of pain and symptom management, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 1 of them a synthesis 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
9 citing papers in PubMed, 1 synthesis or guideline pooled it, 16 citations in OpenAlex.
- Meta-synthesis of qualitative research on comfort experiences of family caregivers in hospice care: a systematic review.Frontiers in public health · 2026Pooled it
- When Is the Best Time to Deliver Supportive Interventions to Hospice Family Caregivers? A Multi-Method Study.The Gerontologist · 2025Trial
- Evaluation of the Quality of Delirium Website Content for Patient and Family Education: Cross-Sectional Study.Journal of medical Internet research · 2025Article
- Close but Not Close Enough: How Distance Caregiving is Associated with Hospice Family Caregiver Hospice Communication Experiences.Health communication · 2024Article
- Predictors of Post-traumatic Stress Symptoms (PTSS), Depression, and Anxiety among Caregivers of Children with Acute Lymphoblastic Leukaemia (ALL).Asian Pacific journal of cancer prevention : APJCP · 2023Article
- "It was terrible, I didn't sleep for two years": A mixed methods exploration of sleep and its effects among family caregivers of in-home hospice patients at end-of-life.Palliative medicine · 2022Article
- Receipt of Hospice Aide Visits Among Medicare Beneficiaries Receiving Home Hospice Care.Journal of pain and symptom management · 2022Article
- Predicting Hospice Transitions in Dementia Caregiving Dyads: An Exploratory Machine Learning Approach.Innovation in aging · 2022Article
- Methodological Challenges for Epidemiologic Studies of Deprescribing at the End of Life.Current epidemiology reports · 2021Article
Corrections and comments
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Authors and funding
5 authors at 1 institution in 1 country.
Funding
Abstract
contextHospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations.
objectivesTo examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life.
methodsSecondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale.
resultsHospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers.
conclusionHospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.
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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.