Hostname: page-component-cd9895bd7-p9bg8 Total loading time: 0 Render date: 2024-12-22T21:07:16.741Z Has data issue: false hasContentIssue false
  • English
  • Français

Social support needs: Discordance between home hospice nurses and former family caregivers

Published online by Cambridge University Press:  17 February 2014

Maija Reblin ,
Kristin G. Cloyes ,
Joan Carpenter ,
Patricia H. Berry ,
Margaret F. Clayton  and
Lee Ellington
Maija Reblin*
Affiliation:
University of Utah, College of Nursing, Salt Lake City, Utah
Kristin G. Cloyes
Affiliation:
University of Utah, College of Nursing, Salt Lake City, Utah
Joan Carpenter
Affiliation:
University of Utah, College of Nursing, Salt Lake City, Utah
Patricia H. Berry
Affiliation:
University of Utah, College of Nursing, Salt Lake City, Utah
Margaret F. Clayton
Affiliation:
University of Utah, College of Nursing, Salt Lake City, Utah
Lee Ellington
Affiliation:
University of Utah, College of Nursing, Salt Lake City, Utah
*
Address correspondence and reprint requests to: Maija Reblin, College of Nursing, University of Utah, 10 South 2000 East, Salt Lake City, Utah 84112. E-mail: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

The two goals of our study were to (1) identify which of five types of social support (Informational, Esteem, Emotional, Tangible, Belonging) are most cited by hospice nurses and family caregivers and (2) determine the match in perception of support needs.

Method:

As part of a larger multiphase project, focus groups were conducted with former family caregivers and hospice nurses to discuss their experiences of home hospice care and to gather their opinions on the important issues involved in that care. Transcripts of focus group discussions were coded for support type (Informational, Esteem, Emotional, Tangible, Belonging) based on definitions from the literature. Nurse and caregiver data were compared to assess for potential match.

Results:

Analysis of coded data suggested that nurses see different types of support to be needed in equal measure across their caseloads, while caregivers expressed priorities for some types of support. Illustrative examples of each type of support are provided and discussed.

Significance of Results:

Because matching support provided with the type of support desired has been linked to improved physical and psychological outcomes, it is important to focus on this match in healthcare populations particularly vulnerable to psychological stress, including family caregivers of home hospice patients. This research has implications for interventions to match support provision to caregiver needs, or for education for home hospice providers to ensure that they are not only sensitive to the possibility of a broad range of needs but also to the necessity to tailor care to those needs.

Keywords

HospiceCaregiverSocial support
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 3 , June 2015 , pp. 465 - 472
Copyright
Copyright © Cambridge University Press 2014 

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

Arora, N.K., Finney Rutten, L.J., Gustafson, D.H., et al. (2007). Perceived helpfulness and impact of social support provided by family, friends, and health care providers to women newly diagnosed with breast cancer. Psycho-Oncology, 16(5), 474–486.Google Scholar
Baron, R.S., Cutrona, C.E., Hicklin, D., et al. (1990). Social support and immune function among spouses of cancer patients. Journal of Personality and Social Psychology, 59(2), 344–352.Google Scholar
Bee, P.E., Barnes, P. & Luker, K.A. (2009). A systematic review of informal caregivers' needs in providing home-based end-of-life care to people with cancer. Journal of Clinical Nursing, 18(10), 1379–1393.Google Scholar
Berry, P.H. & Griffie, J. (2010). Planning for the actual death. In Oxford textbook of palliative nursing, 3rd ed. Ferrell, B.R. & Coyle, N. (eds.), pp. 629–644. New York: Oxford University Press.Google Scholar
Bolger, N. & Amarel, D. (2007). Effects of social support visibility on adjustment to stress: Experimental evidence. Journal of Personality and Social Psychology, 92(3), 458–475.Google Scholar
Bolger, N., Zuckerman, A. & Kessler, R.C. (2000). Invisible support and adjustment to stress. Journal of Personality and Social Psychology, 79(6), 953–961.Google Scholar
Cloyes, K.G., Carpenter, J.G., Berry, P.H., et al. (under review). “A true human interaction”: Comparison of family caregiver and hospice nurse perspectives on needs of family hospice caregivers.Google Scholar
Coyle, N. (2010). Introduction to palliative care nursing care. In Oxford textbook of palliative nursing, 3rd ed. Ferrell, B.R. & Coyle, N. (eds.), pp. 3–11. New York: Oxford University Press.Google Scholar
Crane, P.A. & Constantino, R.E. (2003). Use of the Interpersonal Support Evaluation List (ISEL) to guide intervention development with women experiencing abuse. Issues in Mental Health Nursing, 24(5), 523–541.Google Scholar
Cutrona, C. & Russell, D. (1990). Type of social support and specific stress: Toward a theory of optimal matching. In Social support: An interactional view. Sarason, I.G. et al. (eds.), pp. 319–366. New York: Wiley.Google Scholar
Doorenbos, A.Z., Given, B., Given, C.W., et al. (2007). The influence of end-of-life cancer care on caregivers. Research in Nursing & Health, 30(3), 270–281.Google Scholar
DuBenske, L.L., Wen, K.Y., Gustafson, D.H., et al. (2008). Caregivers' differing needs across key experiences of the advanced cancer disease trajectory. Palliative & Supportive Care, 6(3), 265–272.Google Scholar
Egan City, K.A. & Labyak, M.J. (2010). Hospice palliative care for the 21st century: A model for quality end-of-life care. In Oxford textbook of palliative nursing, 3rd ed. Ferrell, B.R. & Coyle, N. (eds.), pp. 13–52. New York: Oxford University Press.Google Scholar
Given, B., Wyatt, G., Given, C., et al. (2004). Burden and depression among caregivers of patients with cancer at the end of life. Oncology Nursing Forum, 31(6), 1105–1117.Google Scholar
Holt-Lunstad, J., Smith, T.B. & Layton, J.B. (2010). Social relationships and mortality risk: A meta-analytic review. PLoS Medicine, 7(7), e1000316.Google Scholar
Horowitz, L.M., Krasnoperova, E.N., Tatar, D.G., et al. (2001). The way to console may depend on the goal: Experimental studies of social support. Journal of Experimental Social Psychology, 37, 49–61.Google Scholar
House, J.S., Landis, K.R. & Umberson, D. (1988). Social relationships and health. Science, 241(4865), 540–545.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.Google Scholar
Lehman, D.R., Ellard, J.H. & Wortman, C.B. (1986). Social support for the bereaved: Recipients' and providers' perspectives on what is helpful. Journal of Consulting and Clinical Psychology, 54, 438–446.Google Scholar
Linden, W. & Vodermaier, A. (2012). Mismatch of desired versus perceived social support and associated levels of anxiety and depression in newly diagnosed cancer patients. Supportive Care in Cancer, 20(7), 1449–1456.Google Scholar
Maisel, N.C. & Gable, S.L. (2009). The paradox of received social support: The importance of responsiveness. Psychological Science, 20(8), 928–932.Google Scholar
Markowitz, A.J. & McPhee, S.J. (2003). Complexities in prognostication in advanced cancer: “To help them live their lives the way they want to.” The Journal of the American Medical Association, 290(15), 98–104.Google Scholar
National Ethics Committee of the Veterans Health Administration (2003). Ethical boundaries in the patient–clinician relationship. Washington, DC: Veterans Health Administration, Department of Veterans Affairs.Google Scholar
Neuling, S.J. & Winefield, H.R. (1988). Social support and recovery after surgery for breast cancer: Frequency and correlates of supportive behaviours by family, friends and surgeon. Social Science & Medicine, 27(4), 385–392.Google Scholar
Newton, M., Bell, D., Lambert, S., et al. (2002). Concerns of hospice patient caregivers. The ABNF Journal, 13(6), 140–144.Google Scholar
Nijboer, C., Triemstra, M., Tempelaar, R., et al. (2000). Patterns of caregiver experiences among partners of cancer patients. The Gerontologist, 40(6), 738–746.Google Scholar
Reynolds, J.S. & Perrin, N.A. (2004). Mismatches in social support and psychosocial adjustment to breast cancer. Health Psychology, 23(4), 425–430.Google Scholar
Rodakowski, J., Skidmore, E.R., Rogers, J.C., et al. (2012). Role of social support in predicting caregiver burden. Archives of Physical Medicine and Rehabilitation, 93(12), 2229–2236.Google Scholar
Teno, J.M., Gozalo, P.L., Bynum, J.P., et al. (2013). Change in end-of-life care for Medicare beneficiaries: Site of death, place of care, and health care transitions in 2000, 2005, and 2009. The Journal of the American Medical Association, 309(5), 470–477.Google Scholar
Thoits, P.A. (1986). Social support as coping assistance. Journal of Consulting and Clinical Psychology, 54(4), 416–423.Google Scholar
Weitzner, M.A., McMillan, S.C. & Jacobsen, P.B. (1999). Family caregiver quality of life: Differences between curative and palliative cancer treatment settings. Journal of Pain and Symptom Management, 17(6), 418–428.Google Scholar