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Will Patients Want Hospice or Palliative Care if They Do Not Know What It Is?

Matsuyama, Robin K. PhD; Balliet, Wendy PhD; Ingram, Kathleen PhD; Lyckholm, Laurie J. MD; Wilson-Genderson, Maureen PhD; Smith, Thomas J. MD

Journal of Hospice & Palliative Nursing: January-February 2011 - Volume 13 - Issue 1 - p 41-46
doi: 10.1097/NJH.0b013e3182020520
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Approximately half the patients receiving hospice and palliative care services are those with cancer diagnoses. Both hospice and palliative care are underutilized by African Americans. Awareness of service availability is a prerequisite to accessing services. This study assessed awareness of hospice and palliative care among African American and non-Hispanic white patients at a cancer center. A cross-sectional survey was conducted at an urban, university-affiliated oncology clinic (N = 133). Participants were non-Hispanic white (58%) and African American (42%). Descriptive analyses were conducted to examine demographics and hospice and palliative care awareness. χ2 Tests were used for bivariate comparisons. Knowledge of hospice care was lower among African Americans than whites and among those with limited education. Knowledge of palliative care followed the same pattern, but even fewer people were aware of or could define those services. This lack of awareness may explain the disproportionately low use of hospice and palliative care by African Americans. Improved awareness of hospice and palliative care is a first step toward reducing disparities in utilization of important and useful services for persons with life-limiting illnesses. Lack of awareness may limit access by cancer patients to needed hospice and palliative care.

Robin K. Matsuyama, PhD, is Assistant Professor, Massey Cancer Center, Department of Social and Behavioral Health, Virginia Commonwealth University, Richmond.

Wendy Balliet, PhD, is PhD Student, Department of Psychology, Virginia Commonwealth University, Richmond.

Kathleen Ingram, PhD, is Associate Professor, Department of Psychology, Virginia Commonwealth University, Richmond.

Laurie J. Lyckholm, MD, is Professor and Eminent Scholar, Massey Cancer Center, Virginia Commonwealth University, Richmond.

Maureen Wilson-Genderson, PhD, is Adjunct Instructor, Department of Social and Behavioral Health, Virginia Commonwealth University, Richmond.

Thomas J. Smith, MD, Professor and Eminent Scholar, Massey Cancer Center, Virginia Commonwealth University, Richmond.

Address correspondence to Robin K. Matsuyama, PhD, Massey Cancer Center, Department of Social and Behavioral Health, Virginia Commonwealth University PO Box 980149, Richmond, VA 23298-0149 (Rmatsuyama@vcu.edu).

Funding was received from the Thomas Palliative Care Fund, Massey Cancer Center Pilot Award.

The authors report no conflicts of interest.

© 2011 The Hospice and Palliative Nurses Association