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Background: Family caregivers play an increasing role in cancer treatment decision‐making. We examined bias reported by family caregivers in the support they and their patient received from their healthcare team when making these decisions, including associations with distress. Methods: Analysis of 2021 national survey data of family caregivers of patients with cancer (N = 2703). Bias experienced in decision support was assessed with the item: "Have you felt that the support you and the person with cancer have received for making cancer‐related decisions by your doctor or healthcare team has been negatively affected by any of the following?" Check‐all‐that‐apply response options included: age, race, language, education, political affiliation, body weight, insurance type or lack of insurance, income, religion, sexual orientation, and gender/sex. Chi‐square and regression analyses assessed associations between bias and caregiver distress (GAD‐2, PHQ‐2). Results: Of 2703 caregiver respondents, 47.4% (n = 1281) reported experiencing ≥1 bias(es) when receiving decision support for making cancer‐related decisions. Bias was more prevalent among younger caregivers, males, transwomen/men or gender non‐conforming caregivers, racial/ethnic minorities, and those providing care over a longer time period. The odds of having high anxiety (GAD‐2 scores ≥ 3) were 2.1 times higher for caregivers experiencing one type of bias (adjusted OR, 2.1; 95% CI, 1.6–2.8) and 4.2 times higher for caregivers experiencing ≥2 biases (adjusted OR, 4.2; 95% CI, 3.4–5.3) compared to none. Similar results were found for high depression scores (PHQ‐2 scores ≥ 3). Conclusions: Nearly half of caregivers involved in their care recipients' cancer‐related decisions report bias in decision support received from the healthcare team. Experiencing bias was strongly associated with high psychological distress. [ABSTRACT FROM AUTHOR]

Background: The objective of this study was to assess the feasibility, acceptability, and potential efficacy of ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone-a lay navigator-led, early palliative care telehealth intervention for African American/Black and/or rural-dwelling family caregivers of individuals with advanced cancer (ClinicalTrials.gov identifier NCT03464188).Methods: This was a pilot randomized trial (November 2019 to March 2021). Family caregivers of patients with newly diagnosed, stage III/IV, solid-tumor cancers were randomized to receive either an intervention or usual care. Intervention caregivers were paired with a specially trained lay navigator who delivered 6 weekly, 20-minute to 60-minute telehealth coaching sessions plus monthly follow-up for 24 weeks, reviewing skills in stress management, self-care, getting help, staying organized, and future planning. Feasibility was assessed according to the completion of sessions and questionnaires (predefined as a completion rate ≥80%). Acceptability was determined through intervention participants' ratings of their likelihood of recommending the intervention. Measures of caregiver distress and quality of life were collected at 8 and 24 weeks.Results: Sixty-three family caregivers were randomized (usual care, n = 32; intervention, n = 31). Caregivers completed 65% of intervention sessions and 87% of questionnaires. Average ratings for recommending the program were 9.4, from 1 (not at all likely) to 10 (extremely likely). Over 24 weeks, the mean ± SE Hospital Anxiety and Depression Scale score improved by 0.30 ± 1.44 points in the intervention group and worsened by 1.99 ± 1.39 points in the usual care group (difference, -2.29; Cohen d, -0.32). The mean between-group difference scores in caregiver quality of life was -1.56 (usual care - intervention; d, -0.07). Similar outcome results were observed for patient participants.Conclusions: The authors piloted ENABLE Cornerstone, an intervention for African American and rural-dwelling advanced cancer family caregivers. The acceptability of the intervention and data collection rates were high, and the preliminary efficacy for caregiver distress was promising.Lay Summary: To date, very few programs have been developed to support under-resourced cancer family caregivers. To address this need, the authors successfully pilot tested an early palliative care program, called Educate, Nurture, Advise, Before Life Ends (ENABLE) Cornerstone, for African American and rural family caregivers of individuals with advanced cancer. Cornerstone is led by specially trained lay people and involves a series of weekly phone sessions focused on coaching caregivers to manage stress and provide effective support to patients with cancer. The authors are now testing Cornerstone in a larger trial. If the program demonstrates benefit, it may yield a model of caregiver support that could be widely implemented. [ABSTRACT FROM AUTHOR]

Background Objective Design Setting Participants Results Conclusions Implications Identifying priority challenges of older adults with chronic obstructive pulmonary disease (COPD) is critical to designing interventions aimed at improving their well‐being and independence.To prioritize challenges of older adults with COPD and those who care for them to guide refinement of a telephonic nurse coach intervention for patients with COPD and their family caregivers (EPIC: Empowering People to Independence in COPD).Multiphase study guided by Baltes Theory of Successful Aging and the 5Ms Framework: Phase 1: Nominal group technique (NGT), a structured process of prioritizing responses to a question through group consensus. Phase 2: Rapid qualitative analysis. Phase 3: Intervention mapping and refinement.Ambulatory, virtual.Older adults with COPD, family caregivers, clinic staff (nurses, respiratory therapists), clinicians (physicians, nurse practitioners), and health system leaders.NGT sessions were conducted by constituency group with 37 participants (n = 7 patients, n = 6 family caregivers, n = 8 clinic staff, n = 9 clinicians, n = 7 health system leaders) (Phase 1). Participants generated 92 statements across five themes (Phase 2): (1) “Barriers to care”, (2) “Family caregiver needs”, (3) “Functional status and mobility issues”, (4) “Illness understanding”, and (5) “COPD care complexities”. Supplemental oxygen challenges emerged as a critical problem, and prioritized challenges differed by group. Patients and clinic staff prioritized “Functional status and mobility issues”, family caregivers prioritized “Family caregiver needs”, and clinicians and health system leaders prioritized “COPD care complexities”. Intervention mapping (Phase 3) guided EPIC refinement focused on meeting patient priorities of independence and mobility but accounting for all priorities.Diverse constituency groups identified priority challenges for older adults with COPD. Functional status and mobility issues, particularly related to supplemental oxygen, emerged as patient prioritized challenges.Patient‐centered interventions for older adults with COPD must account for their prioritized functional and supplemental oxygen needs and explore diverse constituent perspectives to facilitate intervention enrichment. [ABSTRACT FROM AUTHOR]

Outcomes: 1. Describe roles that caregivers play in supporting patients with cancer treatment decision making 2. Describe challenges that caregivers face when supporting patients with cancer treatment decision making Family caregivers play a critical role in patients' cancer treatment decisions. Using data from a large US national survey, we aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision making. Family caregiver–reported data were analyzed from a national survey conducted by CancerCare® from February to July, 2021. Four caregiver roles were explored in the context of cancer treatment decision making (eg, treatment location, treatment plan, starting/stopping treatment): 1) observer (patient as the primary decision maker); 2) primary decision maker; 3)shared decision maker with the patient; and 4) delegator of the decision to the healthcare team. Ten separate challenges faced by caregivers (eg, information, cost, treatment understanding) were then examined. Chi-square tests and multivariable logistic regression analyses were used to assess differences and associations with caregiver sociodemographic characteristics. Of 2,703 caregiver respondents, 61.5% (n=1,661) reported involvement in patient decisions about cancer treatment. Among these caregivers, 22.2% were an observer, 21.3% were the primary decision maker, 53.9% shared decisions with the patient, and 18.1% delegated treatment decisions to the healthcare team. A majority of caregivers (67.1%) reported at least one challenge when providing assistance with decisions, the most frequent being not knowing how treatments would affect the patient's physical condition (23.0%) and quality of life (21.3%). In multivariable models, whether or not the caregiver was Hispanic/Latino/a was the strongest predictor of facing at least one challenge (b=-.581, Wald=10.69, p<.01). Over 60% of family caregivers were involved in patients' cancer treatment decisions. Major challenges were lack of information about the impact of treatments on patients' physical health and quality of life. Challenges may be more commonly faced by Hispanic/Latino/a caregivers. Results underscore and direct palliative care clinicians' efforts to involve and advocate for including families in patient decision making. [ABSTRACT FROM AUTHOR]