ArticlePloS one2019
How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study.
Article in PloS one, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 63 papers, 5 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.
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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.
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Who cites it
63 citing papers in PubMed, 5 syntheses or guidelines pooled it, 104 citations in OpenAlex.
- Muslim communities' perspectives and preferences regarding end-of-life symptom management: a systematic review and narrative synthesis.BMJ open · 2026Pooled it
- Communication Interventions Targeting Both Patients and Clinicians in Oncology: A Systematic Review of Randomized Controlled Trials.Psycho-oncology · 2025Pooled it
- Decision-making in palliative care: patient and family caregiver concordance and discordance-systematic review and narrative synthesis.BMJ supportive & palliative care · 2023Pooled it
- Caregiving and Shared Decision Making in Breast and Prostate Cancer Patients: A Systematic Review.Current oncology (Toronto, Ont.) · 2023Pooled it
- Experiences of Using Patient Decision Aids for Decisions About Cancer Treatment: A Meta-Aggregation of Qualitative Studies.Cancer nursingPooled it
- Palliative Care Coaching for Family Caregivers of Patients With Advanced Cancer: A Randomized Clinical Trial.JAMA network open · 2026Trial
- Impact of a psychoeducational intervention to improve caregiver knowledge and attitudes toward palliative cancer care.Patient education and counseling · 2025Trial
- Feasibility and Acceptability of Facilitated Advance Care Planning in Outpatient Clinics: A Qualitative Study of Patient and Caregivers Experiences.Journal of applied gerontology : the official journal of the Southern Gerontological Society · 2024Trial
- Examining Caregiver Outcomes in the CONNECT Intervention for Patients With Advanced Cancer.Journal of pain and symptom management · 2023Trial
- An Early Palliative Care Telehealth Coaching Intervention to Enhance Advanced Cancer Family Caregivers' Decision Support Skills: The CASCADE Pilot Factorial Trial.Journal of pain and symptom management · 2022Trial
- A Pilot Study of a Primary Palliative Care Communication Intervention (PRECURSOR) to Address Supportive Oncology Needs for Patients With Incurable Cancer and Their Caregivers in the Outpatient Oncology Setting.Cancer control : journal of the Moffitt Cancer CenterTrial
- Exploring the Acceptability and Feasibility of a Self-directed Approach to Identifying Health Priorities in a Sample of Southern Older African American Adults with Multiple Chronic Conditions.Journal of racial and ethnic health disparities · 2026Article
- Factors influencing palliative care decision-making participation among elderly patients in the terminal stage: a cross-sectional study.BMC palliative care · 2026Article
- Roles undertaken by family caregivers to help individuals with cancer manage symptoms: a qualitative study of caregivers, patients, and oncology clinicians.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- A descriptive study of cancer care experiences and burden of rural South Dakotans.Palliative care and social practice · 2026Article
- Discordance in decision-making between patients with advanced cancer and caregivers from the perspective of healthcare professionals in specialist palliative care: A focus group study.Palliative & supportive care · 2025Article
- Immunotherapy Decision-Making Experiences of Patients With Cancer and Their Family Caregivers: A Qualitative Study.The journal of nursing research : JNR · 2025Article
- "You Want to Shield Your Kids": Patients' and Their Adult-Children's Serious Illness Conversations.Journal of pain and symptom management · 2025Article
- Do coping style and future time perspective relate to surrogate decision-making preparedness? A cross-sectional analysis of heart failure caregivers.Aging & mental health · 2025Article
- "It's a delicate dance": How informal caregivers experience the role and responsibilities of supporting someone living with a lower-grade glioma.Neuro-oncology practice · 2025Article
3 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
11 authors at 3 institutions in 1 country.
Funding
Abstract
aimsNumerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, however, little is known about the caregiver's role in supporting upstream patient decision-making. We aimed to describe the roles of family caregivers in assisting community-dwelling advanced cancer patients with healthcare decision-making across settings and contexts.
methodsQualitative study using one-on-one, semi-structured interviews with community-dwelling persons with metastatic cancer (n = 18) and their family caregivers (n = 20) recruited from outpatient oncology clinics of a large tertiary care academic medical center, between October 2016 and October 2017. Transcribed interviews were analyzed using a thematic analysis approach.
findingsCaregivers averaged 56 years and were mostly female (95%), white (85%), and the patient's partner/spouse (70%). Patients averaged 58 years and were mostly male (67%) in self-reported "fair" or "poor" health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients' upstream healthcare decision-making were: 1) seeking information about the cancer, its trajectory, and treatments options; 2) ensuring family and healthcare clinicians have a common understanding of the patient's treatment plan and condition; 3) facilitating discussions with patients about their values and the framing of their illness; 5) posing "what if" scenarios about current and potential future health states and treatments; 6) addressing collateral decisions (e.g., work arrangements) resulting from medical treatment choices; 6) originating healthcare-related decision points, including decisions about seeking emergency care; and 7) making healthcare decisions for patients who preferred to delegate healthcare decisions to their family caregivers.
conclusionsThese findings highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early decision support interventions for family caregivers.
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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.