Expanding the Support of Family Caregivers of Diverse Patients With Cancer and Diabetes
Summary
This study investigates the feasibility, acceptability, and preliminary efficacy of enCompass Humana, a social support intervention for caregivers of patients with cancer and diabetes. The enCompass program aims to improve support for these caregivers through a randomized feasibility study of a pilot-tested coaching and navigation program. Caregiver services and system-level support are essential, but successful interventions for cancer caregivers are rarely standardized or systematically disseminated. Consequently, many programs do not reach the most underserved caregivers. Challenges to implementation include substantial clinical staff involvement, lack of dissemination and implementation information, and failure to tailor interventions to rural contexts. Despite the lack of standardized supportive interventions, national reports and legislative efforts increasingly recognize the need to support caregivers. Caregivers reported unmet needs in all domains of social support, including instrumental help (e.g., in-home help, housekeeping), logistical and coordination support (e.g., food delivery, accompanying patients to appointments), information about illness and progression, emotional support, self-care guidance, and financial assistance (e.g., parking costs, lost wages). Caregivers show high interest in services but cited uncertainty and lack of strategies for accessing resources. Many are unaware of existing services. Interviews with oncology clinicians and healthcare administrators revealed similar findings: resources exist, but there is no system to match them with caregivers' needs. Preliminary data suggest the intervention improves caregiver coping self-efficacy and reduces anxiety and depression in patients. With input from stakeholders, including caregivers, patients, family caregiving experts, and clinical care experts, the study team adapted the CARING application into enCompass to mitigate structural barriers and normalize support-seeking. The long-term goal is to adapt this psychosocial support program to increase self-efficacy, support-seeking, and reduce loneliness among caregivers. It is hypothesized that enCompass will build self-efficacy and coping skills, serving caregivers throughout the patient's illness and complications.
Arms & interventions
- BehavioralSurvey
Participants will receive up to eight coaching sessions with a caregiver coach and resource materials and access to an online tool designed to help caregivers find resources.
- Otherthe resource booklet from the American Cancer Society
The caregiver will receive the resource booklet from the American Cancer Society.
Outcome measures
Primary
Acceptability of the Intervention Measure (AIM)
The AIM is a 4-item, 5-point Likert scale that measures intervention acceptability. The scale measures each statement from 1, "Completely disagree," to 5, "Completely agree." Scale items are averaged to produce a mean score. The AIM takes approximately 2 minutes to complete by caregivers.
Time frame: 8 weeks
Secondary
Coping Self-Efficacy Scale (CSES)
Time frame: Baseline, 8 weeks, 6 months
Zarit Burden Assessment - Revised
Time frame: Baseline, 8 weeks, 6 months
Duke-UNC Functional Support Questionnaire (FSSQ)
Time frame: Baseline, 8 weeks, 6 months
Hospital Anxiety and Depression Scale (HADS) - Caregivers
Time frame: Baseline, 8 weeks, 6 months
Exit interview for Acceptability
Time frame: 6 months
Karnovsky Performance Score
Time frame: Baseline, 8 weeks, 6 months
NCCN Distress Thermometer
Time frame: Baseline, 8 weeks, 6 months
Hospital Anxiety and Depression Scale (HADS) - Patients
Time frame: Baseline, 8 weeks, 6 months
Eligibility criteria
Study locations (3)
Moffitt Cancer Center
Tampa, Florida, 33612
UNC Lineberger Comprehensive Cancer Center
Chapel Hill, North Carolina, 27514
University of Vermont Cancer Center
Burlington, Vermont, 05401