Hostname: page-component-848d4c4894-x5gtn Total loading time: 0 Render date: 2024-05-28T11:53:49.065Z Has data issue: false hasContentIssue false
  • English
  • Français

Supporting home hospice family caregivers: Insights from different perspectives

Published online by Cambridge University Press:  03 May 2017

Lee Ellington ,
Kristin G. Cloyes ,
Jiayun Xu ,
Lanell Bellury ,
Patricia H. Berry ,
Maija Reblin  and
Margaret F. Clayton
Lee Ellington*
Affiliation:
College of Nursing, University of Utah, Salt Lake City, Utah, USA
Kristin G. Cloyes
Affiliation:
College of Nursing, University of Utah, Salt Lake City, Utah, USA
Jiayun Xu
Affiliation:
College of Nursing, University of Utah, Salt Lake City, Utah, USA
Lanell Bellury
Affiliation:
Georgia Baptist College of Nursing, Mercer University, Atlanta, Georgia, USA
Patricia H. Berry
Affiliation:
Hartford Center of Gerontological Excellence, Oregon Health and Science University, Portland, Oregon, USA
Maija Reblin
Affiliation:
Department of Health Outcomes and Behavior, Moffitt Cancer Center, Tampa, Florida, USA
Margaret F. Clayton
Affiliation:
College of Nursing, University of Utah, Salt Lake City, Utah, USA
*
Address correspondence and reprint requests to: Lee Ellington, College of Nursing, University of Utah, 10 South 2000 East, Salt Lake City, Utah 84112. E-Mail: lee.ellington@nurs.utah.edu or jixcerulean@gmail.com/.
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support.

Method:

Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups.

Results:

Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p < 0.05).

Significance of Results:

Our findings suggest differences in priorities for caregiver support across family caregivers, hospice nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.

Keywords

CaregiverCommunicationCaregiver supportHospice nursingComparative analysis
Type
Original Article
Information
Palliative & Supportive Care , Volume 16 , Issue 2 , April 2018 , pp. 209 - 219
Copyright
Copyright © Cambridge University Press 2017 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Albright, D.L., Washington, K., Parker Oliver, D., et al. (2016). The social convoy for family caregivers over the course of hospice. Journal of Pain and Symptom Management, 51(2), 213–219. Epub ahead of print Nov 3, 2015. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4733635/.Google Scholar
Applebaum, A.J. & Breitbart, W. (2013). Care for the cancer caregiver: A systematic review. Palliative & Supportive Care, 11(03), 231–252. Epub ahead of print Oct 10, 2012. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4973511/.CrossRefGoogle ScholarPubMed
Baile, W.F., Tacchi, P. & Aaron, J. (2012). What professionals in healthcare can do: Family caregivers as members of the treatment team. In Cancer Caregiving in the United States: Research, Practice, Policy. Talley, R.C. et al. (eds.), pp. 103–124. New York: Springer Science + Business Media.Google Scholar
Baldwin, P.K., Wittenberg-Lyles, E., Parker Oliver, D., et al. (2011). An evaluation of interdisciplinary team training in hospice care. Journal of Hospice and Palliative Nursing, 13(3), 172–182.Google Scholar
Brandt, B., Lutfiyya, M.N., King, J.A., et al. (2014). A scoping review of interprofessional collaborative practice and education using the lens of the Triple Aim. Journal of Interprofessional Care, 28(5), 393–399. Epub ahead of print Apr 7. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4162503/.Google Scholar
Cagle, J.G. & Kovacs, P.G. (2011). Informal caregivers of cancer patients: Perceptions about preparedness and support during hospice care. Journal of Gerontological Social Work, 54(1), 92–115.Google Scholar
Carter, P.A. (2001). A not-so-silent cry for help: Older female cancer caregivers' need for information. Journal of Holistic Nursing, 19(3), 271–284.Google Scholar
Caughlin, J.P., Mikucki-Enyart, S.L., Middleton, A.V., et al. (2011). Being open without talking about it: A rhetorical/normative approach to understanding topic avoidance in families after a lung cancer diagnosis. Communication Monographs, 78(4), 409–436.Google Scholar
Clayton, M.F., Latimer, S., Dunn, T.W., et al. (2011). Assessing patient-centered communication in a family practice setting: How do we measure it, and whose opinion matters? Patient Education and Counseling, 84(3), 294–302. Epub ahead of print Jul 5.Google Scholar
Cloyes, K.G., Rosenkranz, S.J., Wold, D., et al. (2014). To be truly alive: Motivation among prison inmate hospice volunteers and the transformative process of end-of-life peer care service. American Journal of Hospice and Palliative Medicine, 31(7), 735–748.CrossRefGoogle ScholarPubMed
Department of Health and Human Services & Centers for Medicare & Medicaid Services (2010). CMS Manual System. Publication 100-07: State Operations Provider Certification. Available from https://www.cms.gov/Regulations-and-Guidance/Guidance/Transmittals/Downloads/R99SOMA.pdf.Google Scholar
Detmar, S.B., Muller, M.J., Wever, L.D., et al. (2001). The patient–physician relationship. Patient–physician communication during outpatient palliative treatment visits: An observational study. The Journal of the American Medical Association, 285(10), 1351–1357. Available from http://jamanetwork.com/journals/jama/fullarticle/193646.CrossRefGoogle ScholarPubMed
Donelan, K., Hill, C.A., Hoffman, C., et al. (2002). Challenged to care: Informal caregivers in a changing health system. Health Affairs, 21(4), 222–231. Available from http://content.healthaffairs.org/content/21/4/222.long.Google Scholar
Ellington, L., Cloyes, K., Berry, P.H., et al. (2013). Complexities for hospice nurses in supporting family caregivers: Opinions from U.S. thought leaders. Journal of Palliative Medicine, 16(9), 1013–1019.Google Scholar
Fineberg, I.C. (2005). Preparing professionals for family conferences in palliative care: evaluation results of an interdisciplinary approach. Journal of Palliative Medicine, 8(4), 857–866.Google Scholar
Fukui, S., Fujita, J., Tsujimura, M., et al. (2011). Late referrals to home palliative care service affecting death at home in advanced cancer patients in Japan: A nationwide survey. Annals of Oncology, 22(9), 2113–2120. Epub ahead of print Feb 9.Google Scholar
Given, B.A., Given, C.W. & Sherwood, P.R. (2012). Family and caregiver needs over the course of the cancer trajectory. Journal of Supportive Oncology, 10(2), 57–64. Epub ahead of print Jan 4.Google Scholar
Harding, R. & Higginson, I. (2001). Working with ambivalence: Informal caregivers of patients at the end of life. Supportive Care in Cancer, 9(8), 642–645.Google Scholar
Hospice and Palliative Credentialing Center (2016). Certifications Offered. Available from http://hpcc.advancingexpertcare.org/competence/certifications-offered/.Google Scholar
Institute of Medicine (2003). Health Professions Education: A Bridge to Quality. Washington, DC: The National Academies Press.Google Scholar
Institute of Medicine (2010). Redesigning Continuing Education in the Health Professions. Washington, DC: The National Academies Press.Google Scholar
Institute of Medicine (2015). Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. Available from http://www.nationalacademies.org/hmd/Reports/2014/Dying-In-America-Improving-Quality-and-Honoring-Individual-Preferences-Near-the-End-of-Life.aspx.Google Scholar
Kent, E.E., Rowland, J.H., Northouse, L., et al. (2016). Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving. Cancer, 122(13), 1987–1995. Epub ahead of print Mar 17.CrossRefGoogle ScholarPubMed
Kim, Y., Shaffer, K.M., Carver, C.S., et al. (2016). Quality of life of family caregivers 8 years after a relative's cancer diagnosis: Follow-up of the National Quality of Life Survey for Caregivers. Psycho-Oncology, 25(3), 266–274. Epub ahead of print May 15, 2015.Google Scholar
Krimshtein, N.S., Luhrs, C.A., Puntillo, K.A., et al. (2011). Training nurses for interdisciplinary communication with families in the intensive care unit: An intervention. Journal of Palliative Medicine, 14(12), 1325–1332. Epub ahead of print Dec 1, 2010. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3263486/.Google Scholar
Kutner, J., Kilbourn, K.M., Costenaro, A., et al. (2009). Support needs of informal hospice caregivers: A qualitative study. Journal of Palliative Medicine, 12(12), 1101–1104. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2883517/pdf/jpm.2009.0178.pdf.Google Scholar
Lau, D.T., Kasper, J.D., Hauser, J.M., et al. (2009). Family caregiver skills in medication management for hospice patients: A qualitative study to define a construct. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 64(6), 799–807. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2763012/pdf/gbp033.pdf.Google Scholar
Levit, L., Balogh, E., Nass, S., et al. (2013). Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press.Google Scholar
McGuire, D.B., Grant, M. & Park, J. (2012). Palliative care and end of life: The caregiver. Nursing Outlook, 60(6), 351–356.Google Scholar
McLaughlin, D., Sullivan, K. & Hasson, F. (2007). Hospice at home service: The carer's perspective. Supportive Care in Cancer, 15(2), 163–170. Epub ahead of print Aug 30, 2006.CrossRefGoogle ScholarPubMed
National Hospice and Palliative Care Organization (2015). NHPCO's Facts and Figures: Hospice Care in America. Available from https://www.nhpco.org/sites/default/files/public/Statistics_Research/2015_Facts_Figures.pdf.Google Scholar
Northouse, L., Williams, A.L., Given, B., et al. (2012). Psychosocial care for family caregivers of patients with cancer. Journal of Clinical Oncology, 30, 1227–1234. Epub ahead of print Mar 12.Google Scholar
Park, S.M., Kim, Y.J., Kim, S., et al. (2010). Impact of caregivers' unmet needs for supportive care on quality of terminal cancer care delivered and caregivers' workforce performance. Supportive Care in Cancer, 18(6), 699–706. Epub ahead of print May 31, 2009.Google Scholar
Parker Oliver, D., Demiris, G., Wittenberg-Lyles, E., et al. (2010). The use of videophones for patient and family participation in hospice interdisciplinary team meetings: A promising approach. European Journal of Cancer Care, 19(6), 729–735. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2891692/.Google Scholar
Parker Oliver, D., Wittenberg-Lyles, E., Washington, K., et al. (2013). Hospice caregivers' experiences with pain management: “I'm not a doctor, and I don't know if I helped her go faster or slower.” Journal of Pain and Symptom Management, 46(6), 1–18.Google Scholar
Pasacreta, J.V., Barg, F., Nuamah, I., et al. (2000). Participant characteristics before and 4 months after attendance at a family caregiver cancer education program. Cancer Nursing, 23(4), 295–303.Google Scholar
Saldana, J. (2013). The Coding Manual for Qualitative Researchers, 2nd ed. London: Sage Publications.Google Scholar
Salmon, P., Mendick, N. & Young, B. (2011). Integrative qualitative communication analysis of consultation and patient and practitioner perspectives: Towards a theory of authentic caring in clinical relationships. Patient Education and Counseling, 82(3), 448–454. Epub ahead of print Dec 15, 2010.Google Scholar
Taplin, S.H., Weaver, S., Salas, E., et al. (2015). Reviewing cancer care team effectiveness. Journal of Oncology Practice. 11(3), 239–246. Available from http://ascopubs.org/doi/full/10.1200/jop.2014.003350.Google Scholar
Tjia, J., Ellington, L. & Clayton, M.F. (2015). Managing medications during home hospice cancer care: The needs of family caregivers. Journal of Pain and Symptom Management, 50(5), 630–641. Epub ahead of print Jul 6. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4649436/pdf/nihms713399.pdf.Google Scholar
Totman, J., Pistrang, N., Smith, S., et al. (2015). “You only have one chance to get it right”: A qualitative study of relatives' experiences of caring at home for a family member with terminal cancer. Palliative Medicine, 29, 496–507.Google Scholar
Uitterhoeve, R.J., Bensing, J.M., Grol, R.P., et al. (2010). The effect of communication skills training on patient outcomes in cancer care: A systematic review of the literature. European Journal of Cancer Care, 19(4), 442–457. Epub ahead of print Dec 17, 2009. Available from https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0029794/.Google Scholar
Visser, A. & Wysmans, M. (2010). Improving patient education by an in-service communication training for health care providers at a cancer ward: Communication climate, patient satisfaction, and the need of lasting implementation. Patient Education and Counseling, 78(3), 402–408.Google Scholar
Walczak, A., Butow, P.N., Bu, S., et al. (2015). A systematic review of evidence for end-of-life communication interventions: Who do they target, how are they structured and do they work? Patient Education and Counseling. 99(1), 3–16. Epub ahead of print Aug 17.Google Scholar
Williams, A.L. & McCorkle, R. (2011). Cancer family caregivers during the palliative, hospice, and bereavement phases: A review of the descriptive psychosocial literature. Palliative & Supportive Care, 9(3), 315–325.Google Scholar
Zhang, A.Y. & Siminoff, L.A. (2003). Silence and cancer: Why do families and patients fail to communicate? Health Communication, 15(4), 415–429.Google Scholar