Questions & Answers About Hospice
For You Or A Loved One
Specifically developed for the African American community
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Resources for Families & Providers: National Hospice & Palliative Care Organization www.nhpco.org |
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Printed brochures are available free of charge in limited quantities to health and community-based organizations serving seriously ill older adults. To order please call: 818.837.3775 x125
Background
In June 2007, Partners in Care received a grant from PacifiCare/United Healthcare for the purpose of developing and distributing a hospice brochure specifically targeting the African American population. Working with Dr. Susan Enguidanos, USC School of Gerontology, Partners in Care incorporated stories of real Hospice patients to improve knowledge and awareness of Hospice services.
Partners is a recognized leader in the field of end-of-life care and has tested and evaluated a model of end-of-life care that employs a multidisciplinary team approach that successfully demonstrated cost-effectiveness and high levels of patient satisfaction. The model is known as In Home Palliative Care and has been widely adopted as the standard of care for terminally ill patients. To learn more: http://www.picf.org/landing_pages/74,3.html
Partners is also committed to reducing ethnic health disparities and projects such as this help us understand the needs and cultural appropriateness of a specific ethnic group. In all of its work, Partners seeks to improve health outcomes for all ethnicities by testing and evaluating approaches to care that are sensitive to cultural values and beliefs.
Issue Statement
Traditionally, terminally ill minorities have encountered a myriad of barriers in accessing Hospice and other end-of-life care services. These barriers include limited knowledge and lack of familiarity with Hospice programs as well as misconceptions of the program (Born, Greiner, Sylvia, Butler, & Ahluwalia, 2004; Reese et al., 1999). Our goal is to reduce ethnic disparities in access to end-of-life care, improve knowledge and awareness of hospice and palliative care programs among African Americans and, eventually, increase enrollment in hospice and palliative care programs among terminally ill African Americans.
Theoretical Concepts
The brochure was developed based on theoretical concepts, including Social Learning Theory (Bandura, 1977) and Theory of Reasoned Action (Ajzen & Fishbein, 1980), that have been used with other health behaviors (Corby, Enguidanos, & Hall, 1996; Terry, Liebman, Person, Bond, Dillard-Smith, et al., 1999).
Approach
This brochure aims to overcome these barriers by developing educational materials that contain culturally appropriate role model stories about African American families’ personal experiences with end-of-life care programs.
The stories provide an opportunity for vicarious learning through the actions of others, and aim to impact behavioral intentions through increasing awareness of Hospice care and changing attitudes toward it. In particular, the stories, developed directly from interviews with local community members, present initial misconceptions held of Hospice by these individuals and the oftentimes contrasting reality of the service.
Through the stories of real Hospice patients and family members, paired with Hospice facts and figures, we hope to improve knowledge, attitudes, and beliefs about Hospice care and provide seriously ill African Americans information they need to make an informed decisions about end of life care.
Methodology
Personal interviews were conducted with hospice patients and family members of current and past hospice patients. These personal stories incorporate the language of the storyteller and carry the cultural values and imagery of the intended audience.
Focus groups were conducted with two adult groups to solicit feedback on imagery, language and the graphic elements of the brochure to ensure cultural appropriateness and resonance with the target audience. More than 20 African American adults, male and female participated in the focus groups.
Evaluation
Evaluation of the brochures is underway – interviews are being conducted and outcomes from interviews will be published on this web page when they become available.
References
Ajzen, I., & Fishbein, M. (1980). Understanding attitudes and predicting social behavior. Englewood Cliffs, NJ: Prentice-Hall.
Bandura, A. (1977). Social learning theory. Englewood Cliffs, NJ: Prentice Hall.
Born W, Greiner KA, Sylvia E, Butler J, Ahluwalia JS. (2004). Knowledge, attitudes and beliefs about end-of-life care among inner-city African Americans and Latino/Hispanic Americans. Journal of Palliative Medicine, 7(2): 247-256.
Corby NH, Enguidanos SM, Kay LS. Development and use of role model stories in a community level HIV risk reduction intervention. Public Health Reports. 1996;111(Suppl 1):54–58
Reese, D. J., Ahern, R. E., Nair, S., O'Faire, J. D., & Warren, C. (1999). Hospice access and use by African Americans: addressing cultural and institutional barriers through participatory action research. Social Work, 44(6), 549-559.
Terry MA, Leibman J, Person B, Bond L, Dillard-Smith C, Turnstall C. The Woman and Infants Demonstration Project: An integrated approach to AIDS prevention and research. AIDS Education & Prevention. 1999;11(2):107–121
USC Davis School of Gerontology
The USC Davis School and its research and services component, the USC Ethel Percy Andrus Gerontology Center, are improving the quality of life for older persons through research and education.
As the oldest and largest school of gerontology in the world, the USC Davis School has a long tradition of forging new pathways in the field of aging. A multidisciplinary institution from its inception in 1975, the USC Davis School was built on the bedrock of excellence in aging research. Research in molecular biology, neuroscience, demography, psychology, sociology and public policy is conducted under the auspices of the Andrus Gerontology Center, founded in 1964.
