ArticleHealth expectations : an international journal of public participation in health care and health policy2023
Family caregiver roles and challenges in assisting patients with cancer treatment decision-making: Analysis of data from a national survey.
Article in Health expectations : an international journal of public participation in health care and health policy, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 1 of them a synthesis that pooled it.
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Who cites it
22 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The benefits of early palliative care on psychological well-being, functional status, and health-related quality of life among cancer patients and their caregivers: a systematic review and meta-analysis.BMC palliative care · 2025Pooled it
- Exploring the determinants of health literacy and its effects on health-related outcomes in family caregivers of patients with cancer.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Trial
- Determinants of attendant satisfaction with oncology service quality in Tamil Nadu, India: a cross-sectional study.Scientific reports · 2026Article
- Cancer clinical trial recruitment for patients from rural areas: a scoping review.International journal for equity in health · 2026Article
- Caregivers as essential members of healthcare teams: lessons learned from enforcement of the "no visitors" policy during the COVID-19 pandemic in Ontario, Canada.BMC health services research · 2026Article
- Values elicitation among surgical oncologists: Findings from an international survey.European journal of surgical oncology : the journal of the European Society of Surgical Oncology and the British Association of Surgical Oncology · 2026Article
- Alberta Family Caregiver Strategy and Action Plan: Enhancing Integration Across Health and Social Care Systems.International journal of environmental research and public health · 2026Article
- Association of comorbidity burden with initial treatment allocation in older women with gynecologic cancer: a retrospective cohort study.Frontiers in medicine · 2026Article
- Analysis of Latent Profiles and Influencing Factors of Patient Activation Among Colorectal Cancer Patients with an Enterostomy.Patient preference and adherence · 2026Article
- Article
- Whose voice counts? Family caregivers' roles in shared decision making for chronic illness in urban South Korea: A qualitative study.PloS one · 2026Article
- Coping styles mediate the association between sense of coherence and symptom distress in patients with colorectal cancer undergoing chemotherapy: A cross-sectional study.Asia-Pacific journal of oncology nursing · 2025Article
- Stakeholder perspectives on the role of caregivers in cancer clinical trial decision-making: results of a qualitative study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Article
- Supportive care needs of the family caregivers of urostomy patients: a qualitative study.Scientific reports · 2025Article
- Decoding clinical trial jargon: helping people understand how safety and quality of life are assessed in cancer trials.Future oncology (London, England) · 2025Article
- Associations between physicians' SDM behaviour and participation of older patients and family members in triadic decision-making: An observational study.PEC innovation · 2024Article
- Breadth and Depth of Patient and Caregiver Supportive Services in Community Oncology (WF-1803CD).Psycho-oncology · 2024Article
- Caring through uncertainty: a qualitative exploration of older colorectal cancer caregivers' experiences during palliative chemotherapy.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024Article
- Assessing the association between quantity and quality of family caregiver participation in decision-making clinical encounters on patient activation in the metastatic breast cancer setting.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024Article
- How Do Patients and Caregivers in Advanced Illness Support One Another in Decision-Making for Patient Care? A Qualitative Interview Study of Patient and Caregiver Dyads in Specialist Palliative Care.Palliative medicine reports · 2024Article
Corrections and comments
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Authors and funding
13 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundWe aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision-making.
methodsFamily caregiver-reported data were analyzed from a national survey conducted in the United States by CancerCare® (2/2021-7/2021). Four select-all-that-apply caregiver roles were explored: (1) observer (patient as primary decision-maker); (2) primary decision-maker; (3) shared decision-maker with patient and (4) decision delegated to healthcare team. Roles were compared across five treatment decisions: where to get treatment, the treatment plan, second opinions, beginning treatment and stopping treatment. Ten challenges faced by caregivers (e.g., information, cost, treatment understanding) were then examined. χ
resultsOf 2703 caregiver respondents, 87.6% reported involvement in patient decisions about cancer treatment, including 1661 who responded to a subsection further detailing their roles and challenges with specific treatment decisions. Amongst these 1661 caregivers, 22.2% reported an observing role, 21.3% a primary decision-making role, 53.9% a shared decision-making role and 18.1% a role delegating decisions to the healthcare team. Most caregivers (60.4%) faced ≥1 challenge, the most frequent being not knowing how treatments would affect the patient's physical condition (24.8%) and quality of life (23.2%). In multivariable models, being Hispanic/Latino/a was the strongest predictor of facing at least one challenge (b = -0.581, Wald = 10.69, p < .01).
conclusionsMost caregivers were involved in patients' cancer treatment decisions. The major challenge was not understanding how treatments would impact patients' physical health and quality of life. Challenges may be more commonly faced by Hispanic/Latino/a caregivers. PATIENT OR PUBLIC CONTRIBUTION: The CancerCare® survey was developed in partnership with caregiving services and research experts to describe the role of cancer family caregivers in patient decision-making and assess their needs for support. All survey items were reviewed by a CancerCare advisory board that included five professional patient advocates and piloted by a CancerCare social worker and other staff who provide counselling to cancer caregivers.
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