John G Cagle1, Daniel J Van Dussen2, Krystal L Culler3, Iraida Carrion4, Seokho Hong5, Jack Guralnik6, Sheryl Zimmerman7. 1. School of Social Work, University of Maryland, Baltimore, MD, USA jcagle@ssw.umaryland.edu. 2. Department of Gerontology, Youngstown State University, Youngstown, OH, USA. 3. College of Health Solutions, Arizona State University, Phoenix, AZ, USA. 4. School of Social Work, University of South Florida, Tampa, FL, USA. 5. School of Social Work, University of Maryland, Baltimore, MD, USA. 6. Division of Gerontology, Department of Epidemiology and Public Health, University of Maryland School of Medicine, Baltimore, MD, USA. 7. School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
Abstract
CONTEXT: Poor knowledge and misperceptions about hospice are believed to be common, but there is scant evidence about the public's understanding of hospice. OBJECTIVES: To examine hospice knowledge among geographically diverse adults; and describe linkages between knowledge, attitudes and beliefs about hospice care, and demographics. METHODS: A small cross-sectional telephone survey of adults living in the contiguous US was conducted using randomly selected numbers (cell phone and landline) and over-sampling of minorities. Measures assessed knowledge (23-item test), attitudes (8-item scale), experiences and preferences related to hospice. RESULTS: 123 participants completed surveys (response rate 46%). 106 (86%) had heard about hospice, 65 (54%) of whom had a personal experience with hospice. Participants had an average hospice knowledge test score of 18 (SD = 3.4) indicating moderate knowledge of hospice. A majority of respondents (62%) did not know that hospice cannot provide concurrent cure-oriented care. Misperceptions about eligibility, coverage of hospice, the provision of hospice in nursing homes or to persons who live alone were not uncommon (missed by >20%). Greater knowledge of hospice was associated with more favorable attitudes about the hospice philosophy of care (r = .22, p = .023) and a greater preference for hospice (p = .049). Respondents who were more educated, worked in the medical field, were non-Hispanic White, and had direct experience with hospice were also more likely to be more knowledgeable about hospice. CONCLUSION: Despite relatively high hospice awareness and favorability, myths and misperceptions about hospice still abound--and may drive ethnic disparities in end-of-life care. Educational interventions and future study are needed.
CONTEXT: Poor knowledge and misperceptions about hospice are believed to be common, but there is scant evidence about the public's understanding of hospice. OBJECTIVES: To examine hospice knowledge among geographically diverse adults; and describe linkages between knowledge, attitudes and beliefs about hospice care, and demographics. METHODS: A small cross-sectional telephone survey of adults living in the contiguous US was conducted using randomly selected numbers (cell phone and landline) and over-sampling of minorities. Measures assessed knowledge (23-item test), attitudes (8-item scale), experiences and preferences related to hospice. RESULTS: 123 participants completed surveys (response rate 46%). 106 (86%) had heard about hospice, 65 (54%) of whom had a personal experience with hospice. Participants had an average hospice knowledge test score of 18 (SD = 3.4) indicating moderate knowledge of hospice. A majority of respondents (62%) did not know that hospice cannot provide concurrent cure-oriented care. Misperceptions about eligibility, coverage of hospice, the provision of hospice in nursing homes or to persons who live alone were not uncommon (missed by >20%). Greater knowledge of hospice was associated with more favorable attitudes about the hospice philosophy of care (r = .22, p = .023) and a greater preference for hospice (p = .049). Respondents who were more educated, worked in the medical field, were non-Hispanic White, and had direct experience with hospice were also more likely to be more knowledgeable about hospice. CONCLUSION: Despite relatively high hospice awareness and favorability, myths and misperceptions about hospice still abound--and may drive ethnic disparities in end-of-life care. Educational interventions and future study are needed.
Keywords:
Medicare Hospice Benefit; attitudes and beliefs; end of life; hospice knowledge; myths and misconceptions about hospice; preference for hospice
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