Skip to main content Accessibility help
×
Home

Supporting home hospice family caregivers: Insights from different perspectives

  • Lee Ellington (a1), Kristin G. Cloyes (a1), Jiayun Xu (a1), Lanell Bellury (a2), Patricia H. Berry (a3), Maija Reblin (a4) and Margaret F. Clayton (a1)...

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.

Copyright

Corresponding author

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/.

References

Hide All
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), 213219. Epub ahead of print Nov 3, 2015. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4733635/.
Applebaum, A.J. & Breitbart, W. (2013). Care for the cancer caregiver: A systematic review. Palliative & Supportive Care, 11(03), 231252. Epub ahead of print Oct 10, 2012. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4973511/.
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. 103124. New York: Springer Science + Business Media.
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), 172182.
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), 393399. Epub ahead of print Apr 7. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4162503/.
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), 92115.
Carter, P.A. (2001). A not-so-silent cry for help: Older female cancer caregivers' need for information. Journal of Holistic Nursing, 19(3), 271284.
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), 409436.
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), 294302. Epub ahead of print Jul 5.
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), 735748.
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.
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), 13511357. Available from http://jamanetwork.com/journals/jama/fullarticle/193646.
Donelan, K., Hill, C.A., Hoffman, C., et al. (2002). Challenged to care: Informal caregivers in a changing health system. Health Affairs, 21(4), 222231. Available from http://content.healthaffairs.org/content/21/4/222.long.
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), 10131019.
Fineberg, I.C. (2005). Preparing professionals for family conferences in palliative care: evaluation results of an interdisciplinary approach. Journal of Palliative Medicine, 8(4), 857866.
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), 21132120. Epub ahead of print Feb 9.
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), 5764. Epub ahead of print Jan 4.
Harding, R. & Higginson, I. (2001). Working with ambivalence: Informal caregivers of patients at the end of life. Supportive Care in Cancer, 9(8), 642645.
Hospice and Palliative Credentialing Center (2016). Certifications Offered. Available from http://hpcc.advancingexpertcare.org/competence/certifications-offered/.
Institute of Medicine (2003). Health Professions Education: A Bridge to Quality. Washington, DC: The National Academies Press.
Institute of Medicine (2010). Redesigning Continuing Education in the Health Professions. Washington, DC: The National Academies Press.
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.
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), 19871995. Epub ahead of print Mar 17.
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), 266274. Epub ahead of print May 15, 2015.
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), 13251332. Epub ahead of print Dec 1, 2010. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3263486/.
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), 11011104. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2883517/pdf/jpm.2009.0178.pdf.
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), 799807. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2763012/pdf/gbp033.pdf.
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.
McGuire, D.B., Grant, M. & Park, J. (2012). Palliative care and end of life: The caregiver. Nursing Outlook, 60(6), 351356.
McLaughlin, D., Sullivan, K. & Hasson, F. (2007). Hospice at home service: The carer's perspective. Supportive Care in Cancer, 15(2), 163170. Epub ahead of print Aug 30, 2006.
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.
Northouse, L., Williams, A.L., Given, B., et al. (2012). Psychosocial care for family caregivers of patients with cancer. Journal of Clinical Oncology, 30, 12271234. Epub ahead of print Mar 12.
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), 699706. Epub ahead of print May 31, 2009.
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), 729735. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2891692/.
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), 118.
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), 295303.
Saldana, J. (2013). The Coding Manual for Qualitative Researchers, 2nd ed. London: Sage Publications.
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), 448454. Epub ahead of print Dec 15, 2010.
Taplin, S.H., Weaver, S., Salas, E., et al. (2015). Reviewing cancer care team effectiveness. Journal of Oncology Practice. 11(3), 239246. Available from http://ascopubs.org/doi/full/10.1200/jop.2014.003350.
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), 630641. Epub ahead of print Jul 6. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4649436/pdf/nihms713399.pdf.
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, 496507.
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), 442457. Epub ahead of print Dec 17, 2009. Available from https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0029794/.
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), 402408.
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), 316. Epub ahead of print Aug 17.
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), 315325.
Zhang, A.Y. & Siminoff, L.A. (2003). Silence and cancer: Why do families and patients fail to communicate? Health Communication, 15(4), 415429.

Keywords

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