"Can You Give Me Respect?" Experiences of the Urban Poor on a Dedicated AIDS Nursing Home Unit

Journal of the Association of Nurses in AIDS Care

Volumn 19, Issue 5, 2008, Pages 342-356

  Hughes, Anne ^a   Davies, Betty ^a   Gudmundsdottir, Maria ^a  

^a NONE

Author keywords

dignity; health disparities; HIV; homeless; marginalization; minorities; nursing home; palliative care; qualitative research; race; respect; substance abuse; urban poor

Indexed keywords

ACQUIRED IMMUNE DEFICIENCY SYNDROME; ARTICLE; FEMALE; HUMAN; MALE; MIDDLE AGED; NURSING; NURSING HOME; POVERTY; URBAN POPULATION;

ACQUIRED IMMUNODEFICIENCY SYNDROME; FEMALE; HUMANS; MALE; MIDDLE AGED; NURSING HOMES; POVERTY; URBAN POPULATION;

EID: 50249168319     PISSN: 10553290     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.jana.2008.04.008     Document Type: Article

References (75)

1. Aday L.A. At risk in America: The health and health care needs of vulnerable populations. 2nd ed. (2001), Jossey-Bass, San Francisco
2. Anderson E.H., and Spencer M.H. Cognitive representations of AIDS: A phenomenological study. Qualitative Health Research 12 (2002) 1338-1352
3. Benner P. The tradition and skill of interpretive phenomenology in studying health, illness and caring practices. In: Benner P. (Ed). Interpretive phenomenology: Embodiment, caring and ethics in health and illness (1994), Sage, Thousand Oaks, CA 99-128
4. Benner P., Tanner C.A., and Chesla C.A. Expertise in nursing practice: Caring, clinical judgment and ethics (1996), Springer, New York
5. Benner P., and Wrubel J. The primacy of caring: Stress and coping in health and illness (1989), Addison-Wesley, Menlo Park, CA
6. Bergland A., and Kirkevold M. Thriving in nursing homes in Norway: Contributing aspects described by residents. International Journal of Nursing Studies 43 (2006) 681-691
7. Bolton L.B., Giger J.N., and Georges C.A. Structural and racial barriers to health care. In: Villarruel A.M., and Porter C.P. (Eds). Annual review of nursing research. Structural and racial barriers to health care Vol. 22 (2004), Springer Publishing, New York 39-58
8. Born W., Greiner K.A., Sylvia E., Butler J., and Ahluwalia J.S. Knowledge, attitudes, and beliefs about end-of-life care among inner-city African Americans and Latinos. Journal of Palliative Medicine 7 (2004) 247-256
9. Brechtl J.R., Patrick P.A., Visintainer P., and Brand D.A. Predictors of death within six months in patients with advanced AIDS. Palliative & Supportive Care 3 (2005) 265-272
10. Buchanan R.J., Wang S., and Huang C. Analyses of nursing home residents with HIV and dementia using the minimum data set. Journal of Acquired Immune Deficiency Syndromes 26 (2001) 246-255
11. Bunting S.M., and Seaton R. Health care participation of perinatal women with HIV: What helps and what gets in the way?. Health Care for Women International 20 (1999) 563-578
12. Carroll J.F., McGovern J.J., McGinley J.J., Torres J.C., Walker J.R., Pagan E.S., et al. A program evaluation study of a nursing home operated as a modified therapeutic community for chemically dependent persons with AIDS. Project Samaritan AIDS Services, Inc.'s Residential Health Care Facility, Highbridge Section, Bronx, NY. Journal of Substance Abuse Treatment 18 (2000) 373-386
13. Castro A., and Farmer P. Understanding and addressing AIDS-related stigma: From anthropological theory to clinical practice in Haiti. American Journal of Public Health 95 (2005) 53-59
14. Centers for Disease Control and Prevention. (2007). Proportions of AIDS cases and population by race/ethnicity reported in 2005: 50 states and DC. Retrieved November 1, 2007, from http://www.cdc.gov/hiv/topics/surveillance/resources/slides/race-ethnicity/slides/race-ethnicity.pdf
15. Chochinov H.M., Hack T., McClement S., Kristjanson L., and Harlos M. Dignity in the terminally ill: A developing empirical model. Social Science and Medicine 54 (2002) 433-443
16. Chochinov H.M., Krisjanson L.J., Hack T., Hassard T., McClement S., and Harlos M. Dignity in the terminally ill: Revisited. Journal of Palliative Medicine 9 (2006) 666-672
17. Cibulka N.J. Conception practices of HIV-infected women in the Midwest. Journal of the Association of Nurses in AIDS Care 18 (2007) 3-12
18. Cohen M.A. Psychodynamic psychotherapy in an AIDS nursing home. Journal of the American Academy of Psychoanalysis 27 (1999) 121-133
19. Crawley L., and Kagawa-Singer M. Racial, cultural, and ethnic factors affecting the quality of end-of-life care in California: Findings and recommendations (2007), California Health Care Foundation, Oakland, CA
20. Crawley L., Payne R., Bolden J., Payne T., Washington P., and Williams S. Palliative and end-of-life care in the African American community. Journal of the American Medical Association 284 (2000) 2518-2521
21. DeNavas-Walt, C., Proctor, B. D., & Lee, C. H. (2006). Income, poverty, and health insurance coverage in the United States: 2005 (Current Population Reports, P60-231). Retrieved February 7, 2007, from http://www.census.gov/prod/2006pubs/p60-231.pdf
22. Duffy L. Suffering, shame, and silence: The stigma of HIV/AIDS. Journal of the Association of Nurses in AIDS Care 16 (2005) 13-20
23. Dreyfus H.L. Being-in-the-world: Commentary on Heidegger's Being and Time (1991), MIT Press, Cambridge, MA
24. Enes S.P. An exploration of dignity in palliative care. Palliative Medicine 17 (2003) 263-269
25. Engle V.F., Fox-Hill E., and Graney M.J. The experience of living-dying in a nursing home: Self-reports of Black and White older adults. Journal of American Geriatric Society 46 (1998) 1091-1096
26. Field M.J., and Cassel C.K. Approaching death: Improving care at the end of life (1997), National Academy Press, Washington, DC
27. Fields S.D., and Jemmott L.S. The love and belonging healthcare needs of HIV infected African-American men upon admission to an AIDS dedicated nursing home. Journal of National Black Nurses Association 14 (2003) 38-44
28. Fields S.D., and Selwyn P.A. The physiologic health care needs of HIV-infected Black men on admission to an AIDS-dedicated nursing home. Journal of the Association of Nurses in AIDS Care 14 (2003) 63-72
29. Fullilove M.T. The House of Joshua: Meditations on family and place (1999), University of Nebraska Press, Lincoln, NE
30. Goulet J.L., Molde S., Constantino J., Gaughan D., and Selwyn P.A. Psychiatric comorbidity and the long-term care of people with AIDS. Journal of Urban Health 77 (2000) 213-221
31. Groger L. Coming to terms: African-Americans' complex ways of coping with life in a nursing home. International Journal of Aging and Human Development 55 (2002) 183-205
32. Hack T.F., Chochinov H.M., Hassard T., Kristjanson L.J., McClement S., and Harlos M. Defining dignity in terminally ill cancer patients: A factor-analytic approach. Psycho-Oncology 13 (2004) 700-708
33. Hall J.M. Marginalization revisited: Critical, postmodern and liberation perspectives. Advances in Nursing Science 22 (1999) 88-102
34. Hall J.M., Stevens P.E., and Meleis A.I. Marginalization: A guiding concept for valuing diversity in nursing knowledge development. Advances in Nursing Science 16 (1994) 23-41
35. Heidegger M. Being and time (J. Macquarrie & E. Robinson, Trans.) (1962), Harper Collins, New York (Original work published 1927)
36. Hughes, A. M. (2007). "Can you give me respect?" Experiences of the urban poor with advanced disease. Unpublished dissertation, University of California San Francisco.
37. Hughes A., Gundmundsdottir M., and Davies B. Everyday struggling to survive: Experiences of the urban poor living with advanced cancer. Oncology Nursing Forum 34 (2007) 1113-1118
38. Jacobson N. Dignity and health: A review. Social Science and Medicine 64 (2007) 292-302
39. Kayser-Jones J. The experience of dying: An ethnographic nursing home study. Gerontologist, 42 Spec No 3 (2002) 11-19
40. Kleiman S. Phenomenology: To wonder and search for meanings. Nurse Researcher 11 (2004) 7-19
41. Kleinman A. Writing at the margin: Discourse between anthropology and medicine (1995), University of California Press, Berkeley, CA
42. Krakauer E.L., Crenner C., and Fox K. Barriers to optimum end-of-life care for minority patients. Journal of the American Geriatric Society 50 (2002) 182-190
43. Lehrman S.E., Gentry D., and Fogarty T.E. Predictors of California nursing facilities' acceptance of people with HIV/AIDS. Health Services Research 32 (1998) 867-880
44. Leung D. Granting death with dignity: Patient, family and professional perspectives. International Journal of Palliative Nursing 13 (2007) 170-174
45. Lynn J., Schuster J.L., and Kabcenell A. Improving care for the end of life: A source book for health care managers and clinicians (2000), Oxford University, New York
46. MacIntyre R. Mortal men: Living with asymptomatic HIV (1999), Rutgers University Press, New Brunswick, NJ
47. Macklin R. Dignity is a useless concept. British Medical Journal 327 (2003) 1419-1420
48. Madriz E. Focus groups in feminist research. In: Denzin N.K., and Lincoln Y.S. (Eds). Handbook of qualitative research (2000), Sage Publications, Thousand Oaks, CA 835-850
49. Moran M. The spirituality of people of color living with AIDS in long-term care. Journal of Pastoral Care & Counseling 59 (2005) 247-254
50. National Institutes of Health. (2004). National Institutes of Health State of the Science Conference Statement: Improving end-of-life care. Retrieved March 29, 2008, from http://consensus.nih.gov/2004/2004EndOfLifeCareSOS024html.htm
51. Ncama B.P., and Uys L.R. Exploring the fear of contracting HIV/AIDS among trauma nurses in the province of Kwazulu-Natal. Curationis 26 (2003) 11-18
52. Ohlen J. Violation of dignity in care-related situations. Research and Theory for Nursing Practice: An International Journal 18 (2004) 371-385
53. O'Neill J.F., Romaguera R., Parham D., and Marconi K. Practicing palliative care in resource-poor settings. Journal of Pain and Symptom Management 24 (2002) 148-151
54. Outlaw F.H. Stress and coping: The influence of racism on the cognitive appraisal processing of African Americans. Issues in Mental Health Nursing 14 (1993) 399-409
55. Pearson W.S., and Hueston W.J. Treatment of HIV/AIDS in the nursing home: Variations in rural and urban long-term care settings. Southern Medical Journal 97 (2004) 338-341
56. Pleschberger S. Dignity and the challenge of dying in nursing homes: The residents' view. Age and Ageing 36 (2007) 197-202
57. Rajabiun S., Mallinson R.K., McCoy K., Coleman S., Drainoni M.L., Rebholz C., et al. Getting me back on track": The role of outreach interventions in engaging and retaining people living with HIV/AIDS in medical care. AIDS Patient Care and STDs 21 Suppl 1 (2007) S20-S29
58. Robichaud L., Durand P.J., Bedard R., and Quellet J.P. Quality of life indicators in long term care: Opinions of elderly residents and their families. Canadian Journal of Occupational Therapy. Revue Canadienne d Ergotherapie 73 (2006) 245-251
59. Rogers A., Karlsen S., and Addington-Hall J. 'All the services were excellent. It is when the human element comes in that things go wrong': Dissatisfaction with hospital care in the last year of life. Journal of Advanced Nursing 31 (2000) 768-774
60. Ross R., Sawatphanit W., Draucker C.B., and Suwansujarid T. The lived experiences of HIV-positive, pregnant women in Thailand. Health Care for Women International 28 (2007) 731-744
61. Ross R., Sawatphanit W., and Suwansujarid T. Finding peace (Kwam Sa-ngob Jai): A Buddhist way to live with HIV. Journal of Holistic Nursing 25 (2007) 228-235 discussion 236-227
62. Ruangjiratain S., and Kendall J. Understanding women's risk of HIV infection in Thailand through critical hermeneutics. Advances in Nursing Science 21 (1998) 42-51
63. Saunders J.M. Self-caring in a family unit of an HIV-positive individual: A hermeneutical inquiry. Clinical Nursing Research 3 (1994) 334-352
64. Selwyn P.A., and Forstein M. Overcoming the false dichotomy of curative vs palliative care for late-stage HIV/AIDS. Journal of the American Medical Association 290 (2003) 806-814
65. Selwyn P.A., Goulet J.L., Molde S., Constantino J., Fennie K.P., Wetherill P., et al. HIV as a chronic disease: Implications for long-term care at an AIDS-dedicated skilled nursing facility. Journal of Urban Health 77 (2000) 187-203
66. Seymour J., and Clark D. Phenomenological approaches to palliative care research. Palliative Medicine 12 (1998) 127-131
67. Shin J.K., Newman L.S., Gebbie K.M., and Fillmore H.H. Quality of care measurement in nursing home AIDS care: A pilot study. Journal of the Association of Nurses in AIDS Care 13 (2002) 70-76
68. Smedley B.D., Stith A.Y., and Nelson A.R. Unequal treatment: Confronting racial and ethnic disparities in health care (2003), National Academy Press, Washington, DC
69. Street A.F., and Kissane D.W. Constructions of dignity in end-of-life care. Journal of Palliative Care 17 (2001) 93-101
70. SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatment (SUPPORT). Journal of the American Medical Association 274 (1995) 1591-1598
71. Tarzian A.J., Neal M.T., and O'Neil J.A. Attitudes, experiences and beliefs affecting end-of-life decision-making among homeless individuals. Journal of Palliative Medicine 8 (2005) 36-48
72. Turner K., Chye R., Aggarwal G., Philip J., Skeels A., and Lickiss J. Dignity in dying: A preliminary study of patients in the last three days of life. Journal of Palliative Care 12 (1996) 7-13
73. Uphold C.R., and Mkanta W.N. Review: Use of health care services among persons living with HIV infection: State of the science and future directions. AIDS Patient Care and STDs 19 (2005) 473-485
74. Van Manen M. Researching lived experience (1990), State University of New York Press, Albany, NY
75. Zerwekh J.V. Caring on the ragged edge: Nursing persons who are disenfranchised. Advances in Nursing Science 22 (2000) 47-61