Close but Not Close Enough: How Distance Caregiving is Associated with Hospice Family Caregiver Hospice Communication Experiences

ABSTRACT

Half of hospice family caregivers report having unmet information needs, which can contribute to poor pain and symptom management, emergency department use, and hospice disenrollment for care-recipients and to caregiver strain and stress. Effective communication between hospice teams and family caregivers is critical yet communication inadequacies persist. Despite the growing prevalence of distance caregiving, including in hospice care, and the relationship between caregiver proximity and communication effectiveness, little is known about how caregiver proximity is associated with caregiver perceptions of hospice communication. In this secondary analysis of quantitative data from two multisite randomized clinical trials (NCT03712410 and NCT02929108) for hospice family caregivers (N = 525), multivariate linear models with demographic and contextual controls were used to analyze caregivers’ perceptions of caregiver-centered communication with hospice providers based on caregiver proximity to the hospice care-recipient. In multivariate models, “local” hospice family caregivers who lived within 1 hour of the hospice care-recipient reported less effective communication with the hospice team than co-residing caregivers; and older caregivers rated communication more favorably than younger caregivers. To improve communication and collaboration between hospice teams and caregivers, regardless of proximity, distance communication training for hospice teams and interventions such as telehealth communication and virtual tools that enable triadic collaboration are recommended. Research is needed to understand why local caregivers, specifically, perceive communication quality less favorably and how hospice teams can better meet local and distance caregiver communication needs.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the National Institute of Nursing Research of the National Institutes of Health (R01NR012213), registered on Clinicaltrials.gov as NCT03712410 (PISCES: A Problem Solving Intervention for Hospice Caregivers, Principal Investigator Dr. GEORGE DEMIRIS) and the National Cancer Institute of the National Institutes of Health (R01CA203999), registered on ClinicalTrials.gov as NCT02929108 (ACCESS: Access for Cancer Caregivers for Education and Support for Shared Decision Making, Principal Investigator Dr. DEBRA PARKER OLIVER). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. In addition, Dr. Starr is supported by the Ruth L. Kirschstein National Research Service Award training program in Individualized Care for At Risk Older Adults at the University of Pennsylvania, National Institute of Nursing Research (T32NR009356).