Family caregivers’ perspectives on communication with cancer care providers

Abstract

Purpose/Objectives: Family caregivers of individuals living with cancer are often highly involved in communication with healthcare teams, yet little is known about their experiences, needs, and preferences in this role. To address this gap in the knowledge base, researchers sought to explore family caregivers’ perspectives on communication with oncology care providers.

Design and Methods: Researchers conducted a secondary inductive thematic analysis of qualitative interviews originally collected as part of a randomized clinical trial of a supportive intervention for family caregivers of patients with cancer (N = 63).

Participants: Participants were family caregivers of adult patients with cancer. Most were patients’ spouses/long-term partners (52.3%) or adult children/grandchildren (29.2%). Caregivers of patients with all cancer types and stages of disease progression were eligible for study enrollment.

Findings: Caregivers valued communication with healthcare providers who were attentive, genuine, broadly focused on patients and caregivers’ experiences, sensitive to unmet information needs, and responsive to the potentially different communication preferences of patients and caregivers.

Interpretation: Family caregivers expressed a strong preference for person-centered communication, conceptualized as communication that helps healthcare providers meet the needs of patients and caregivers both as individuals and as an interdependent unit of care, and that acknowledges individuals’ experiences beyond their prescribed roles of “cancer patient” and “caregiver.”

Implications for Psychosocial Oncology Practice: Psychosocial oncology providers’ strong orientation to the biopsychosocial and spiritual aspects of cancer care delivery make them uniquely positioned to support family caregivers. Findings suggest that providers should explicitly communicate their commitment to both patient and family care, involve family caregivers in psychosocial assessment activities and subsequent intervention, and strive to honor patients and caregivers’ potentially different communication preferences.

Keywords:

• caregiver
• communication
• family
• oncology
• qualitative research

Acknowledgments

The authors acknowledge the invaluable contributions of Diane Huneke, RN; Mary L. Cunningham, RN, AOCNS; Tammy Reeder, RN, BSN; Anna Hulbert, MD; and the family caregivers who generously volunteered their time to participate in this study.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This study was supported by the National Cancer Institute Research Award Number R21CA191165 (Principal Investigator: Washington) and is registered as clinical trial record NCT02427490. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute or the National Institutes of Health.

Notes on contributors

Karla T. Washington

Karla T. Washington, MSW, PhD, is an Associate Professor in the University of Missouri Department of Family and Community Medicine. Dr. Washington’s research focuses on interdisciplinary teamwork in palliative care and family caregiving at end of life.

Kevin W. Craig

Kevin W. Craig, MD, MSPH, is an Associate Professor of Clinical Family and Community Medicine at the University of Missouri. He is Medical Director of the Supportive and Palliative Care Program at University of Missouri Health Care.

Debra Parker Oliver

Debra Parker Oliver, MSW, PhD, is the Paul Revare MD Family Professor of Family Medicine at the University of Missouri School of Medicine, where she studies behavioral interventions for family caregivers of patients receiving hospice and palliative care.

Jeffrey S. Ruggeri

Jeffrey S. Ruggeri, BS, is a student at the University of Missouri School of Medicine. He is a member of the Geriatrics Scholars Program and is pursuing a career in Emergency Medicine.

Samantha R. Brunk

Samantha R. Brunk, BS, is a student at the University of Missouri School of Medicine, where she served as President of the Geriatrics Interest Group for two years and is an active member in the Geriatrics Scholars Program.

Andrea K. Goldstein

Andrea K. Goldstein, BS, is a student at the University of Missouri School of Medicine. She plans to pursue residency training in Obstetrics and Gynecology, and hopes to focus on making healthcare more accessible for all women.

George Demiris

George Demiris, PhD, is a Penn Integrates Knowledge (PIK) University Professor at the University of Pennsylvania with a joint appointment in the School of Nursing’s Department of Biobehavioral Health Sciences and the Perelman School of Medicine’s Department of Biostatistics, Epidemiology and Informatics. Dr. Demiris studies informatics approaches to supporting seriously ill adults and their family caregivers.