Skip to main content Accessibility help
×
Home

Delivering palliative care to patients and caregivers in inner-city communities: Challenges and opportunities

  • Karen Kayser (a1), Rosanna F. DeMarco (a2), Charu Stokes (a1), Susan DeSanto-Madeya (a2) and Philip C. Higgins (a1)...

Abstract

Objective:

Social and economic barriers can hinder access to quality palliative and end-of-life care for patients living in inner-city communities. Using a community-based participatory research (CBPR) approach, we investigated the stresses associated with living with a chronic disease and barriers to access and utilization of palliative care resources experienced by low-income patients and caregivers in five inner-city communities.

Methods:

Four focus groups (N = 33) were conducted with community stakeholders, including healthcare professionals (social workers and nurses), persons living with chronic illnesses (e.g., HIV/AIDS, cardiovascular disease, and cancer), and caregivers. Focus group responses were analyzed using thematic analyses.

Results:

Patients' and caregivers' stresses centered around five themes: lack of family support, communication barriers with healthcare professionals, minority stress, caregiver burden, and lack of spiritual support. The community stakeholders identified resources and services to improve access to care and the quality of life of underserved, low-income populations living with chronic illnesses.

Significance of Results:

A CBPR approach enabled us to develop an interdisciplinary and culturally sensitive intervention to begin addressing the palliative and end-of-life needs of the patients and caregivers of the inner-city community.

Copyright

Corresponding author

Address correspondence and reprint requests to: Karen Kayser, Kent School of Social Work, University of Louisville, Oppenheimer Hall, Louisville, Kentucky 40292. E-mail: karen.kayser@louisville.edu

References

Hide All
Aoun, S.M., Kristjanson, L.J., Currow, D.C., et al. (2005). Caregiving for the terminally ill: At what cost? Palliative Medicine, 19, 551555.
Baanders, A.N. & Heijmans, M. (2007). The impact of chronic diseases: The partner's perspective. Family and Community Health, 30, 305317.
Bayliss, E.A., Edwards, A.E., Steiner, J.F., et al. (2008). Processes of care desired by elderly patients with multimorbidities. Family Practice, 25, 287293.
Biordi, D.L. (2002). Social isolation. In Chronic Illness: Impact and Interventions, 5th ed.Lubkin, I.M. & Larsen, P.D. (eds.), pp. 119145. Sudbury, MA: Jones and Bartlett.
Bookbinder, M., Glajchen, M., McHugh, M., et al. (2011). Nurse practitioner–based models of specialist palliative care at home: Sustainability and evaluation of feasibility. Journal of Pain and Symptom Management, 41, 2534.
Brown, M.A. & Powell-Cope, G. (1991). AIDS family caregiving: Transitions through uncertainty. Nursing Research, 40, 338345.
Byock, I. & Twohig, J. (2006). Delivering palliative care in challenging settings and to hard-to-reach populations. In Textbook of Palliative Nursing, 2nd ed.Ferrell, B.R. & Coyle, N. (eds.), pp. 11091118. New York: Oxford University Press.
Centers for Disease Control and Prevention. (2011). Capacity building. http://www.cdc.gov/hiv/topics/cba/ (Accessed August 11, 2011).
Christopher, S., Watts, V., McCormick, A.K.H.G., et al. (2008). Building and maintaining trust in a community-based participatory research partnership. American Journal of Public Health, 98, 13981404.
Connor, S.R., Teno, J., Spence, C., et al. (2008). Family evaluation of hospice care: Results from voluntary submission of data. Journal of Pain & Symptom Management, 30, 917.
Davies, E. & Higginson, I.J. (eds.) (2004). Palliative Care. Copenhagen: World Health Organization.
DeMarco, R.F. & Segraves, M.M. (2012). Community assessment. In Community and Public Health Nursing: Evidence for Practice. Harkness, G. &. DeMarco, R. (eds.), pp. 175191. Philadelphia: Lippincott, Williams & Wilkins.
Dy, S.M., Reder, E.A., McHale, J.M., et al. (2003). Caring for patients in an inner-city home hospice: Challenges and rewards. Home Health Care Management & Practice, 15, 291299.
El Osta, B. & Bruera, B. (2006). Models of palliative care delivery. In Textbook of Palliative Medicine. Bruera, E., Higginson, I., von Gunten, C. & Ripamonti, C. (eds.), pp. 266276. New York: Oxford University Press.
Elsayem, A., Swint, K., Fisch, M.J., et al. (2004). Palliative care inpatient service in a comprehensive cancer center: Clinical and financial outcomes. Journal of Clinical Oncology, 22, 20082014.
Elsayem, A., Smith, M.L., Parmley, L., et al. (2006). Impact of a palliative care service on in-hospital mortality in a cancer center. Journal of Palliative Medicine, 9, 894902.
Fadul, N., Elsayem, A., Palmer, J.L., et al. (2007). Predictors of access to palliative care services among patients who died at a comprehensive cancer center. Journal of Palliative Medicine, 10, 11461152.
Faridi, Z., Grunbaum, J.A., Gray, B.S., et al. (2007). Community-based participatory research: Necessary next steps. Prevention in Chronic Disease, 4, A70.
Fatone, A.M., Moadel, A.B., Foley, F.W., et al. (2007). Urban voices: The quality-of-life experience among women of color with breast cancer. Palliative and Supportive Care, 5, 115125.
Ferrell, B.R., Virani, R. & Grant, M. (1998). Improving end-of-life care education in home care. Journal of Palliative Medicine, 1, 1119.
Ferrell, B.R., Virani, R. & Grant, M. (1999). Analysis of symptom assessment and management content in nursing textbooks. Journal of Palliative Medicine, 2, 161172.
Gaston, M.H., Barrett, S.E., Johnson, T.L., et al. (1998). Health care needs of medically underserved women of color: The role of the Bureau of Primary Health Care. Health and Social Work, 23, 8695.
Gaugler, J.E., Hanna, N., Linder, J., et al. (2005). Cancer caregiving and subjective stress: A multi-site, multi-dimensional analysis. Psycho-Oncology, 14, 771785.
Gysels, M. & Higginson, I. (2004). Improving Supportive and Palliative Care for Adults with Cancer: Research Evidence. London: National Institute for Clinical Excellence.
Harkness, G.A. & DeMarco, R.F. (eds.) (2012). Community and Public Health Nursing: Evidence for Practice. Philadelphia: Lippincott, Williams & Wilkins.
Hearn, J. & Higginson, I.J. (1998). Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review. Palliative Medicine, 12, 317332.
Higginson, I.J., Finlay, I., Goodwin, D.M., et al. (2002). Do hospital-based palliative care teams improve care for patients or families at end of life? Journal of Pain and Symptom Management, 23, 96106.
Hughes, A. (2005). Poverty and palliative care in the US: Issues facing the urban poor. International Journal of Palliative Nursing, 11, 613.
Israel, B.A., Schulz, A.J., Parker, E.A., et al. (1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19, 173202.
Jablonski, A. & Wyatt, G.K. (2005). A model for identifying barriers to effective symptom management at end-of-life. Journal of Hospice and Palliative Nursing, 7, 2336.
Johnson, D.C., Kassner, C.T., Houser, J., et al. (2005). Barriers to effective symptom management in hospice. Journal of Pain & Symptom Management, 29, 6979.
Jones, L. & Wells, K. (2007). Strategies for academic and clinician engagement in community-participatory partnered research. The Journal of the American Medical Association, 297, 407410.
Kane, R.L., Wales, J., Berstein, L., et al. (1984). A randomized controlled trial of hospice care. The Lancet, 323, 890894.
Kane, R., Berstein, L., Wales, J., et al. (1985). Hospice effectives in controlling pain. The Journal of the American Medical Association, 253, 26832686.
Koffman, J., Burke, G., Dias, A., et al. (2007). Demographic factors and awareness of palliative care and related services. Palliative Medicine, 21, 145153.
Krakauer, E.L., Crenner, C. & Fox, K. (2002). Barriers to optimum end-of-life care for minority patients. Journal of the American Geriatrics Society, 50, 182190.
Massachusetts Department of Public Health. (2007). Massachusetts deaths. http://www.mass.gov/dph/resep/resep.htm (Accessed October 26, 2009).
McCorkle, R., Hughes, L. & Levinson, B. (1998). Nursing interventions for newly diagnosed older cancer patients facing terminal illness. Journal of Palliative Care, 14, 3945.
Miller, J.F. (2000). Coping with Chronic Illness: Overcoming Powerlessness, 3rd ed.Philadelphia: F.A. Davis.
Minkler, M. & Wallerstein, N. (2003). Community-Based Participatory Research for Health. San Francisco: Jossey-Bass.
Morrison, R.S. & Meier, D.E. (2004). High rates of advance care planning in New York City's elderly population. Archives of Internal Medicine, 164, 24212426.
National Hospice and Palliative Care Organization. (2007). NHPCO facts and figures: Hospice care in America. http://www.caringinfo.org (Accessed September 10, 2009).
O'Hare, P.A., Malone, D., Lusk, E., et al. (1993). Unmet needs of black patients with cancer post-hospitalization: A descriptive study. Oncology Nursing Forum, 20, 659664.
O'Mahony, S., McHenry, J., Snow, D., et al. (2008). A review of barriers to utilization of the Medicare hospice benefits in urban populations and strategies for enhanced access. Journal of Urban Health, 85, 281–90.
Palattiyil, G. & Chakrabarti, M. (2008). Coping strategies of families in HIV/AIDS care: Some exploratory data from two developmental contexts. AIDS Care, 20, 881885.
Poochikian-Sarkissian, S., Sidani, S., Wenneberg, R.A., et al. (2008). Psychological impact of illness intrusiveness in epilepsy: Comparison of treatments. Psychology, Health Medicine, 13, 129145.
Reese, D.J., Aher, R.E., Nair, S., et al. (1999). Hospice access and use by African Americans: Addressing cultural and institutional barriers through participatory action research. Social Work, 44, 549559.
Reese, D.J., Melton, E. & Ciaravino, K. (2004). Programmatic barriers to providing culturally competent end-of-life care. American Journal of Hospice and Palliative Care, 21, 357364.
Smith, A.K., McCarthy, E.P., Paulk, E., et al. (2008). Racial and ethnic differences in advance care planning among patients with cancer: Impact of terminal illness acknowledgment, religiousness, and treatment preferences. Journal of Clinical Oncology, 26, 41314137.
Teno, J.M., Clarridge, B.R., Casey, V., et al. (2004). Family perspectives on end-of-life care at the last place of care. The Journal of the American Medical Association, 291, 8893.
Travis, S. & Piercy, K. (2002). Family caregivers. In Chronic Illness: Impact and Interventions, 5th ed.Lubkin, I.M. & Larsen, P.D. (eds.), pp. 233260. Sudbury: Jones and Bartlett.
Turner, H.A. & Catania, J.A. (1997). Informal caregiving to persons with AIDS in the United States: Caregiver burden among central cities residents eighteen to forty-nine years old. American Journal of Community Psychology, 25, 3559.
Wardlaw, L.A. (1994). Sustaining informal caregivers for persons with AIDS. Family in Society: The Journal of Contemporary Human Services, 75, 373384.
Watson, J., Hockley, J. & Dewar, B. (2006). Barriers to implementing an integrated care pathway for the last days of life in nursing homes. International Journal of Palliative Nursing, 12, 234240.
Winston, C.A., Leshner, P., Kramer, J., et al. (2005). Overcoming barriers to access and utilization of hospice and palliative care services in African-American communities. Omega, 50, 151163.
Zemzar, I.S. (1984). Adjustment to health loss: Implications for psychosocial treatment. In Community Health Care for Chronic Physical Illness: Issues and models. Milligan, S.M. (ed.), pp. 4448. Cleveland, OH: Case Western Reserve University Press.

Keywords

Delivering palliative care to patients and caregivers in inner-city communities: Challenges and opportunities

  • Karen Kayser (a1), Rosanna F. DeMarco (a2), Charu Stokes (a1), Susan DeSanto-Madeya (a2) and Philip C. Higgins (a1)...

Metrics

Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed