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Cases of the Jensons and Matthews Brief Review of Literature Methodology Findings How to Help Families Be Ready for Hospice Future Studies
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Gaps in literature related to the decision making process for hospice and end of life care There is limited research about what makes a family ready to enroll in hospice
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End of Life Communication and Involvement of Health Care Professionals (Csikai, 2006; Cassarett, Crowley, & Hirschman, 2004) Factors which affect hospice utilization (Haley et., 2002; Zhang & Siminoff, 2003)
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Sample of Convenience Two focus groups - - key informants -- family members Three individual interviews -- two doctors -- one pastor
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16 participants six family members seven participants in the key informants three key informant individual interviews
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Gender › 5 males › 11 female Ethnicity › 12 Caucasian › 2 African American › 2 Hispanic Professions › 4 nurses › 3 social workers › 2 doctors › 1 pastor
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Role of Doctor in Explaining Terminal Illness > Need face-to-face conversation > Important how hospice is explained > Understandable terminology
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Lack of Education and Negative Perceptions › Knowing someone who utilized hospice › Educate health care professionals › End-of-life discussions
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Religious Beliefs > Christians more willing > Impacts decision > Minister and church community important > Same faith= differing views
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Cultural Beliefs › African American › Hispanic › Asian
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Family Support* Duration of Care giving* Physical Decline* Acceptance of Terminal Illness* *handout
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Age of patient* Gender of Primary Caregiver* Trusting relationship with doctor or hospice staff* Previous discussion about end of life issues*
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Combining qualitative methods provides more comprehensive review Multiple factors were confirmed Fills gap
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Results can not be generalized Group was not culturally diverse Unable to gain information from families who did not choose hospice
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Negative Perceptions --Point out support family provides --Identify hospice as a support --Focus on the family strengths Extend boundaries of support
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Sole/primary caregiver? Physical help? Concerns about progression of the illness?
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Spiritual or cultural beliefs? Comfort medications? End-of-life issues? Receiving help?
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Impact of religious and cultural beliefs Compare readiness to enroll compared to utilizing hospice services Test reliability and validity of assessment tool Quantitative research on what factors determine a family’s readiness for hospice
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Casarett, D. J., Crowley, R. L., & Hirschman, K. B. (2004). How should clinicians describe hospice to patients and families? Journal of the American Geriatrics Society, 52(11), 1923-1928. Cherlin, E., Fried, T., Prigerson, H. G., Schulman-Green, D., Johnson-Hurzeler, R., & Bradley, E. H. (2005). Communication between physicians and family caregivers about care at the end of life: When do discussions occur and what is said? Journal of Palliative Medicine, 8(6), 1176-1185. Csikai, E. L. (2006). Bereaved hospice caregivers' perceptions of the end-of -life care communication process and the involvement of health care professionals. Journal of Palliative Medicine, 9(6), 1300-1309. Grange, C. M., Matsuyama, R. K., Ingram, K. M., Lyckholm, L. J., & Smith, T. J. (2008). Identifying supportive and unsupportive responses of others: Perspectives of African American and caucsasian cancer patients. Journal of Psychosocial Oncology, 26 (1), 81-99.
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Haley, W., Allen, R., Reynolds, S., Chen, H., Burton, A., & Gallegher -Thompson, D. (2002). Family issues in end-of-life decision making and end-of-life care. American Behavioral Scientist, 46 (2), 284-298. Jnowiak, S. M. (1995). Bereavement experiences of African-Americans: The use of focus groups. Psy.D. Dissertation, Indiana University of Pennsylvania, United States- Pennsylvania. Lambert, S. D. & Loiselle, C. G. (2008). Combining individual interviews and focus groups to enhance data richness. Journal of Advanced Nursing, 62(2), 228-237. Ogle, K. S., Mavis, B. & Wyatt, G. K. (2002). Physicians and hospice care: Attitudes, knowledge, and referrals. Journal of Palliative Medicine, 5(1), 85-92. Zhang, A. Y., & Siminoff, L. A. (2003). The role of the family in treatment decision making by patients with cancer. Oncology Nursing Forum, 30(6), 1022
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