ArticleJournal of pain and symptom management2013
Hospice caregivers' experiences with pain management: "I'm not a doctor, and I don't know if I helped her go faster or slower".
Article in Journal of pain and symptom management, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04869085 (The Use of a Digital Application for Reporting Pain and Pain Management in Home Hospice), which is not on this 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.
The Use of a Digital Application for Reporting Pain and Pain Management in Home Hospice
Who cites it
24 citing papers in PubMed, 1 synthesis or guideline pooled it, 52 citations in OpenAlex.
- Family Caregiver Challenges in Pain Management for Patients with Advanced Illnesses: A Systematic Review.Journal of palliative medicine · 2022Pooled it
- The pain identification and communication toolkit: a training program to support family caregivers of persons with ADRD.BMC geriatrics · 2025Trial
- A Hospice Intervention for Caregivers: Improving Home Hospice Management of End-Of-Life Symptoms (I-HoME) Pilot Study.Journal of the American Geriatrics Society · 2025Trial
- Hospice Family Caregiver Involvement in Care Plan Meetings: A Mixed-Methods Randomized Controlled Trial.The American journal of hospice & palliative care · 2017Trial
- Examining Social Support and Digital Literacy Among Caregivers of People Living With Dementia Receiving Hospice Services.The American journal of hospice & palliative care · 2025Article
- Bedbound Status During the Last Year of Life Among Community-Dwelling Older Adults.JAMA network open · 2025Article
- Pain Management Education for Rural Hospice Family Caregivers: A Pilot Study With Embedded Implementation Evaluation.The American journal of hospice & palliative care · 2024Article
- Close but Not Close Enough: How Distance Caregiving is Associated with Hospice Family Caregiver Hospice Communication Experiences.Health communication · 2024Article
- Adapting an Intervention to Address Barriers to Pain Management in Hospice: Formative Research to Inform EMPOWER-D for Dementia Caregivers.Palliative medicine reports · 2024Article
- Assessing the feasibility, acceptability, and preliminary efficacy of a novel symptom management care delivery intervention for caregivers receiving home hospice care: The I-HoME protocol.Contemporary clinical trials · 2024Article
- A study protocol for e-PainSupport: The use of a digital application for reporting pain and pain management in home hospice.Contemporary clinical trials communications · 2023Article
- Simultaneously reassuring and unsettling: a longitudinal qualitative study of community anticipatory medication prescribing for older patients.Age and ageing · 2022Article
- Symptom Management Experience of End-of-Life Family Caregivers: A Population-Based Study.Journal of pain and symptom management · 2022Article
- Survival in hospice patients with dementia: the effect of home hospice and nurse visits.Journal of the American Geriatrics Society · 2021Article
- Associations Between Hospice Care and Scary Family Caregiver Experiences.Journal of pain and symptom management · 2021Article
- Understanding the Experience of Cancer Pain From the Perspective of Patients and Family Caregivers to Inform Design of an In-Home Smart Health System: Multimethod Approach.JMIR formative research · 2020Article
- Development and Preliminary Evaluation of a Pain Management Manual for Hospice Providers to Support and Educate Family Caregivers.The American journal of hospice & palliative care · 2019Article
- Communicating Caregivers' Challenges With Cancer Pain Management: An Analysis of Home Hospice Visits.Journal of pain and symptom management · 2018Article
- Pain Management Concerns From the Hospice Family Caregivers' Perspective.The American journal of hospice & palliative care · 2018Article
- Pain in Hospice Patients With Dementia: The Informal Caregiver Experience.American journal of Alzheimer's disease and other dementias · 2016Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 3 institutions in 1 country.
Funding
Abstract
contextThose caring for their loved ones in hospice experience tremendous stress, being faced with numerous decisions as they work to manage the pain experienced by their loved one. Although hospice care teams create pain management strategies, it is the role of the caregiver to implement these plans.
objectivesThe purpose of this study was to further understand the hospice caregiver experience relating to pain management.
methodsSemistructured interviews with 146 caregivers provided data for the study. Responses to seven questions asking for a ranking of end-of-life pain management indicated a less than ideal experience. Available narratives from 38 caregivers were analyzed for themes related to further understanding of the concerns.
resultsFive themes were identified in the data including difficulty with administration of pain medicines, concerns about side effects of medications, insecurity with pain assessment, frustrations with communication among health care team members, and memories of unrelieved pain.
conclusionThese findings should raise concern among hospice professionals, whose commitment is to the management of pain, including emotional pain, with a focus on both the patient and the family as a unit of care. These data clearly suggest that hospice providers have an opportunity to be sensitive to perceptions held by caregivers regarding pain management. Effective planning for pain control must incorporate the values and beliefs not only of each patient but also of the family caregiver.
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.