227
Views
0
CrossRef citations to date
0
Altmetric
Research Articles

Exploring the Lived Experiences of Rural Hospice Social Workers in Navigating “Cracked” Systems

&

References

  • Adshead, L., & Dechamps, A. (2016). End of life care: Everybody’s business. Journal of Social Work Practice, 30(2), 169–185. doi:10.1080/02650533.2016.1168379
  • Alcide, A., & Potocky, M. (2015). Adult hospice social work intervention outcomes in the United States. Journal of Social Work in End-of-Life & Palliative Care, 11(3-4), 367–385. doi:10.1080/15524256.2015.1107806
  • Baker, L., Egan-Lee, E., Martimianakis, M. A., & Reeves, S. (2011). Relationships of power: Implications for interprofessional education. Journal of Interprofessional Care, 25(2), 98–104. doi:10.3109/13561820.2010.505350
  • Beddoe, L. (2011). Critical Social Work: Theories and practices for a socially just world (2nd Edition). Australian Social Work, 64(2), 234–236. doi:10.1080/10304312.2011.579375
  • Bhatnagar, M., & Lagnese, K. (2020). Hospice Care. Treasure Island, FL: StatPearls Publishing, National Center for Biotechnology Information, U. S. National Library of Medicine.
  • Blacker, S., Head, B. A., Jones, B. L., Remke, S. S., & Supiano, K. (2016). Advancing hospice and palliative care social work leadership in interprofessional education and practice. Journal of Social Work in End-of-Life & Palliative Care, 12(4), 316–330. doi:10.1080/15524256.2016.1247771
  • Blumenberg, E., & Weinstein Agrawal, A. (2014). Getting around when you’re just getting by: Transportation survival strategies of the poor. Journal of Poverty, 18(4), 355–378. doi:10.1080/10875549.2014.951905
  • Buhler, W. K. (2007). Care of the chronically ill at home: An unresolved dilemma in health policy for the United States. Milbank Quarterly, 85(4), 611–639.
  • Cagle, J., Osteen, P., Sacco, P., & Jacobson-Frey, J. (2017). Psychosocial assessment by hospice social workers: A content review of instruments from a national sample. Journal of Pain and Symptom Management, 53(1), 40–48. doi:10.1016/j.jpainsymman.2016.08.016
  • Campbell, C. L., Merwin, E., & Yan, G. (2009). Factors that influence the presence of a hospice in a rural community. Journal of Nursing Scholarship : An Official Publication of Sigma Theta Tau International Honor Society of Nursing, 41(4), 420–428. doi:10.1111/j.1547-5069.2009.01310.x
  • Center for Disease Control (CDC). (2020). Retrieved from https://www.cdc.gov/aging/disparities/index.htm.
  • Chokshi, D. (2018). Income, poverty, and health inequality. JAMA, 319(13), 1312–1313. doi:10.1001/jama.2018.2521
  • Colaizzi, P. (1978). Psychological research as the phenomenologist view it. In R. Valle & M. King (Eds.), Existential phenomenological alternatives for psychology (pp. 48–71). New York, NY: Oxford University Press.
  • Cosgrove, D., Kramer, C. S., Mountz, S., & Lee, E. (2020). The role of identity in motivating and shaping the experiences of social work participatory action research scholars. Affilia, 35(4), 552–571. doi:10.1177/0886109920913331
  • Coustasse, A., Quiroz, T., & Lurie, S. (2008). To the bitter end: Disparities in end-of-life care. Journal of Hospital Marketing & Public Relations, 18(2), 167–185. doi:10.1080/15390940802232473
  • Creswell, J. W. (2018). Qualitative inquiry & research design: Choosing among five approaches (4th ed.). Thousand Oaks, CA: Sage.
  • Curd, J., & Hong, M. (2022). “We are all just walking each other home”: Exploring the lived experiences of rural hospice social workers in “companioning” the dying. Journal of Social Work in End-of-Life & Palliative Care, 18(3), 252–272. doi:10.1080/15524256.2022.2093313
  • Davidson, J. (2016). Does the culture of modern day palliative care social work leave room for leadership? Journal of Social Work Practice, 30(2), 203–218. doi:10.1080/02650533.2016.1168385
  • Day, M. D. (2012). Interdisciplinary hospice team processes and multidimensional pain: A qualitative study. Journal of Social Work in End-of-Life & Palliative Care, 8(1), 53–76.
  • Doolittle, G. G., Nelson, E. /L., Spaulding, A. O., Lomenick, A. F., Krebill, H. M., Adams, N. J., … Barnes, J. L. (2019). TeleHospice: A Community-engaged model for utilizing mobile tablets to enhance rural hospice care. The American Journal of Hospice & Palliative Care, 36(9), 795–800. doi:10.1177/1049909119829458
  • Dowling, M. (2005). From Husserl to van Manen. A review of different phenomenological approaches. International Journal of Nursing Studies, 44(1), 131–142. doi:10.1016/j.ijnurstu.2005.11.026
  • Duncan-Daston, R., Foster, S., & Bowden, H. (2016). A look into spirituality in social work practice within the hospice setting. Journal of Religion & Spirituality in Social Work: Social Thought, 35(3), 157–178. doi:10.1080/15426432.2015.1102672
  • Fourie, C. (2015). Moral distress and moral conflict in clinical ethics. Bioethics, 29(2), 91–97. doi:10.1111/bioe.12064
  • Gerstorf, D., Ram, N., Goebel, J., Schupp, J., Lindenberger, U., & Wagner, G. G. (2010). Where people live and die makes a difference: Individual and geographic disparities in well-being progression at the end of life. Psychology and Aging, 25(3), 661–676. doi:10.1037/a0019574
  • Giesbrecht, M., Mollison, A., Whitlock, K., & Stajduhar, K. I. (2023). “Once you open that door, it’s a floodgate”: Exploring work-related grief among community service workers providing care for structurally vulnerable populations at the end of life through participatory action research. Palliative Medicine, 37(4), 558–566. doi:10.1177/02692163221139727
  • Hardy, D., Chan, W., Liu, C., Cormier, J., Xia, R., Bruera, E., & Du, X. (2010). Racial disparities in the use of hospice services according to geographic residence and socioeconomic status in an elderly cohort with nonsmall cell lung cancer. Cancer, 117(7), 1506–1515. doi:10.1002/cncr.25669
  • Haxton, J. E., & Boelk, A. Z. (2010). Service families on the frontline: Challenges and creative solutions in rural hospice social work. Social Work in Health Care, 49(6), 526–550. doi:10.1177/02692163221139727
  • Henson, J. S. (2020). Burnout or compassion fatigue: A comparison of concepts. Medsurg Nursing, 29(1), 77–95.
  • Hermann, C. P. (2001). Spiritual needs of dying patients: A qualitative study. Oncology Nursing Forum, 28(1), 67–72.
  • Hill, C. V., Pérez-Stable, E. J., Anderson, N. A., & Bernard, M. A. (2015). The national institute on aging health disparities research framework. Ethnicity & Disease, 25(3), 245–254.
  • Keith-Jennings, B., Llobrera, J., & Dean, S. (2019). Links of the supplemental nutrition Assistance program with food insecurity, poverty, and health: Evidence and potential. American Journal of Public Health, 109(12), 1636–1640. doi:10.2105/AJPH.2019.305325
  • Latimer, A., Fantus, S., Pachner, T. M., Benner, K., & Leff, V. (2023). Palliative and hospice social workers’ moral distress during the COVID-19 pandemic. Palliative & Supportive Care, 21(4), 628–633. PMID: 36165291. doi:10.1017/S1478951522001341
  • Lopez, K., & Willis, D. (2004). Descriptive versus interpretive phenomenology: Their contributions to nursing knowledge. Qualitative Health Research, 14(5), 726–735. doi:10.1177/1049732304263638
  • Marmo, S., & Berkman, C. (2018). Social workers’ perceptions of job satisfaction, interdisciplinary collaboration, and organizational leadership. Journal of Social Work in End-of-Life & Palliative Care, 14(1), 8–27. doi:10.1080/15524256.2018.1437590
  • Mason, M. (2010). Sample size and saturation in PhD studies using qualitative interviews [63 paragraphs]. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 11(3), Art 8.
  • McPherson, C. J., Wilson, K. G., & Murray, M. A. (2007). Feeling like a burden: Exploring the perspectives of patients at the end of life. Social Science & Medicine (1982), 64(2), 417–427. doi:10.1016/j.socscimed.2006.09.013
  • Mixer, S. J., Fornehed, M. L., Varney, J., & Lindley, L. C. (2014). Culturally congruent end-of-life care for rural Appalachian people and their families. Journal of Hospice and Palliative Nursing : JHPN : The Official Journal of the Hospice and Palliative Nurses Association, 16(8), 526–535. doi:10.1097/NJH.0000000000000114
  • Munhall, P. L. (2012). Nursing research: A qualitative perspective (5th ed.). Sudbury, MA: Jones and Bartlett Publishers.
  • National Hospice & Palliative Care Organization (NHPCO). (2020). Retrieved from at Hospice Facts & Figures | NHPCO
  • National Hospice & Palliative Care Organization (NHPCO). (2021a). Retrieved from 418.56.pdf (nhpco.org)
  • National Hospice & Palliative Care Organization (NHPCO). (2021b). Retrieved from at Social Worker | NHPCO
  • National Hospice & Palliative Care Organization. (2018). Retrieved from at History of Hospice | NHPCO
  • Norton, E. M., & Miller, P. J. (2012). What their terms of living and dying might be: Hospice social workers discuss Oregon’s Death with Dignity Act. Journal of Social Work in End-of-Life & Palliative Care, 8(3), 249–264. doi:10.1080/15524256.2012.708295
  • Oliver, D. P., & Peck, M. (2008). Inside the interdisciplinary team experiences of hospice social workers. Journal of Social Work in End-of-Life & Palliative Care, 2(3), 7–21. doi:10.1300/J457v02n03_03
  • Ordille, J. (2016). Phenomenology in end-of-life care: Implications for philosophy and clinical practice. Clinical Social Work Journal, 44(2), 170–178. doi:10.1007/s10615-015-0536-3
  • Parker Oliver, D., Washington, K., Demiris, G., Wittenberg-Lyles, E., & Novak, H. (2012). Problem solving interventions: An opportunity for hospice social workers to better meet caregiver needs. Journal of Social Work in End-of-Life & Palliative Care, 8(1), 3–9. doi:10.1080/15524256.2012.650669
  • Pease, B., Goldingay, S., Hosken, N., & Nipperess, S. (2020). Doing critical social work: Transformative practices for social justice. New York, NY: Routledge.
  • Pehlivan, T., & Güner, P. (2017). Compassion fatigue: The known and unknown. Journal of Psychiatric Nursing, 9(2), 129–134. doi:10.14744/phd.2017.25582
  • Quinn-Lee, L., Olson-McBride, L., & Unterberger, A. (2014). Burnout and death anxiety in hospice social workers. Journal of Social Work in End-of-Life & Palliative Care, 10(3), 219–239. doi:10.1080/15524256.2014.938891
  • Reese, D. J. (2011). Interdisciplinary perceptions of the social work role in hospice: Building upon the classic Kulys and Davis study. Journal of Social Work in End-of-Life & Palliative Care, 7(4), 383–406. doi:10.1080/15524256.2011.623474
  • Rine, C. M. (2018). Is social work prepared for diversity in hospice and palliative care? Health & Social Work, 43(1), 41–50. doi:10.1093/hsw/hlx048
  • Royal College of Nursing. (2014). Only one third of dying people who wish to die at home actually do, survey finds. Nursing Standard, 28(46), 8–8.
  • Rubin, R. (2015). Improving The Quality of Life at the End of Life. JAMA, 313(21), 2110–2112. doi:10.1001/jama.2015.4234
  • Sewell, A. A. (2017). Inequality: Live poor, die young. Nature, 545(7654), 286–287. doi:10.1038/545286a
  • Smalley, K. B., & Warren, J. C. (2012). Rurality as a diversity issue. In Rural mental health: Issues, policies, and best practices (pp. 37–47).
  • Smallwood, N. (2010). Poorest are more likely to die in hospital. British Medical Journal, 341(7769), 366.
  • Snow, D., Zurcher, L., & Sjoberg, G. (1982). Interviewing by comment: An adjunct to the direct question. Qualitative Sociology, 5(4), 285–311. doi:10.1007/BF00986755
  • Spronk, H. E. (2014). Boundaries, hospice and rural communities: Social workers’ perspective.
  • Stensland, M., & Landsman, M. (2017). Burnout among Iowa hospice social workers: A test of the job demands-resources model. Journal of Social Work in End-of-Life & Palliative Care, 13(4), 219–238. doi:10.1080/15524256.2017.1385567
  • Webb, W. A. (2015). When dying at home is not an option: Exploration of hostel staff views on palliative care for homeless people. International Journal of Palliative Nursing, 21(5), 236–244. doi:10.12968/ijpn.2015.21.5.236
  • Weisenfluh, S. M., & Csikai, E. L. (2013). Professional and educational needs of hospice and palliative care social workers. Journal of Social Work in End-of-Life & Palliative Care, 9(1), 58–73. doi:10.1080/15524256.2012.758604
  • Wheeler, M. (2018). Indiana’s community and home options to institutional care for the elderly and disabled (CHOICE) program. The Reporter, 22(15). Retrieved from https://www.iidc.indiana.edu/irca/articles/indianas-community-and-home-options-to-institutional-care-for-the-elderly-and-disabled-choice-program.html
  • Williams, B. (2004). Dying young, dying poor: A sociological examination of existential suffering among low-socioeconomic status patients. Journal of Palliative Medicine, 7(1), 27–37. doi:10.1089/109662104322737223
  • Wu, H.-L., & Volker, D. L. (2009). The use of theory in qualitative approaches to research: Application in end-of-life studies. Journal of Advanced Nursing, 65(12), 2719–2732. doi:10.1111/j.1365-2648.2009.05157.x

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.