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Predictors of caregiver distress among palliative home care clients in Ontario: Evidence based on the interRAI Palliative Care

Published online by Cambridge University Press:  22 March 2012

John P. Hirdes ,
Shannon Freeman ,
Trevor Frise Smith  and
Paul Stolee
John P. Hirdes*
Affiliation:
School of Public Health and Health Systems, University of Waterloo, Waterloo, Ontario, Canada
Shannon Freeman
Affiliation:
School of Public Health and Health Systems, University of Waterloo, Waterloo, Ontario, Canada
Trevor Frise Smith
Affiliation:
Department of Sociology, Nipissing University, North Bay, Ontario, Canada
Paul Stolee
Affiliation:
School of Public Health and Health Systems, University of Waterloo, Waterloo, Ontario, Canada
*
Address correspondence and reprint requests to: John P. Hirdes, Department of Health Studies and Gerontology, University of Waterloo, 200 University Avenue West, Waterloo, Ontario, Canada N2L 3G1. E-mail: [email protected]
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Abstract

Objective:

This study examines predictors of caregiver distress among community-based palliative care clients. Analyses are based upon interRAI Palliative Care (interRAI PC) assessment data from palliative home care programs in three regions in Ontario, Canada.

Method:

The study sample involved all community-based palliative care clients in Ontario who were assessed with the interRAI PC as part of normal clinical practice during pilot implementation of the instrument between 2007 and 2009 (N = 3,929). The assessments were performed by trained case managers and were used as the basis for determining service needs to be addressed through services contracted from provider agencies. The main study outcome of interest was the presence of one or more indicators of caregiver distress: helper(s) unable to continue caring activities; primary informal helper expresses feelings of distress, anger, or depression; family or close friends report feeling overwhelmed by person's illness.

Results:

Caregiver distress was evident among about 22% of palliative home care clients. Multivariate analyses identified included clinical instability (Changes in Health, End Stage disease, Signs and Symptoms [CHESS] scale), depressive symptoms, cognitive impairment, and positive outlook as significant client-level predictors. Significant caregiver characteristics included hours of informal care. Three service use/provider variables were significant predictors of caregiver distress: the specific home care agency, hospitalizations in the last 90 days, and nursing visits.

Significance of results:

Caregiver distress affects approximately one in five palliative care clients in the community. This may lead to a number of adverse outcomes for the caregiver and client. The experience of distress is affected by client, caregiver, and agency characteristics that are readily identified by the interRAI PC assessment instrument. The present results point to the need for a care planning protocol that may be used on a targeted basis for clients experiencing or at elevated risk of caregiver distress.

Keywords

Caregiver distressAssessmentInterRAI PC
Type
Original Articles
Information
Palliative & Supportive Care , Volume 10 , Issue 3 , September 2012 , pp. 155 - 163
Copyright
Copyright © Cambridge University Press 2012

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References

REFERENCES

Aranda, S. & Hayman-White, K. (2001). Home caregivers of the person with advanced cancer: An Australian perspective. Cancer Nursing, 24, 300–307.CrossRefGoogle ScholarPubMed
Aronson, J. (1990) Women's perspectives on informal care of the elderly: Public ideology and personal experience of giving and receiving care. Ageing and Society, 10, 61–84.CrossRefGoogle Scholar
Brink, P., Smith, T.F. & Kitson, M. (2008) Determinants of do-not-resuscitate orders in palliative home care. Journal of Palliative Medicine, 11, 226–232.CrossRefGoogle ScholarPubMed
Brink, P., Smith, T.F. & Linkewich, B. (2006). Factors associated with pressure ulcers in palliative home care. Journal of Palliative Medicine, 9, 1369–1375.CrossRefGoogle ScholarPubMed
Burrows, A.B., Morris, J.N., Simon, S.E., et al. (2000). Development of a minimum data set-based depression rating scale for use in nursing homes. Age Ageing, 29, 165–172.CrossRefGoogle ScholarPubMed
Chappell, N. & Reid, C. (2002). Burden and well-being among caregivers: Examining the distinction. The Gerontologist, 42, 772–780.CrossRefGoogle ScholarPubMed
Deeken, J., Taylor, K., Mangan, P., et al. (2003). Care for the caregivers: A Review on self-report instruments developed to measure the burden, needs and quality of life of informal caregivers. Journal of Pain and Symptom Management, 26, 922–953.CrossRefGoogle ScholarPubMed
Dumont, S., Turgeon, J., Allard, P., et al. (2006). Caring for a loved one with advanced cancer: Determinants of psychological distress in family caregivers. Journal of Palliative Medicine, 9, 912–921.CrossRefGoogle ScholarPubMed
Earle, C.C., Park, E.R., Lai, B., et al. (2003). Identifying potential indicators of the quality of end-of-life cancer care from administrative data. Journal of Clinical Oncology, 21, 1133–1138.CrossRefGoogle ScholarPubMed
Emanuel, E., Fairclough, D., Slutsman, J., et al. (2000). Understanding economic and other burdens of terminal illness: The Experience of patients and their caregivers. Annals of Internal Medicine, 132, 451–459.CrossRefGoogle ScholarPubMed
Ferrario, S., Cardillo, V., Balzarini, E., et al. (2004). Advanced cancer at home: Caregiving and bereavement. Palliative Medicine, 18, 129–136.CrossRefGoogle Scholar
Fredriksen, K.I. & Scharlach, A.E. (1999). Employee family care responsibilities. Family Relations, 48, 189–196.CrossRefGoogle Scholar
Fried, T.R., Bradley, E., O'Leary, J., et al. (2005). Unmet desire for caregiver–patient communication and increased caregiver burden. Journal of the American Geriatrics Society, 53, 59–65.CrossRefGoogle ScholarPubMed
Fries, B.E., Morris, J.N., Bernabei, R., et al. (2007). Rethinking the resident assessment protocols (Letter to the Editor). Journal of the American Geriatrics Society, 55, 1139–1140.CrossRefGoogle Scholar
Fries, B.E., Simon, S.E., Morris, J.N., et al. (2001). Pain in US nursing homes: Validating a pain scale for the minimum data set. The Gerontologist, 41, 173–179.CrossRefGoogle ScholarPubMed
Gaugler, J.E., Hanna, H., Linder, J., et al. (2005). Cancer caregiving and subjective stress: A Multi-site, multi-dimensional analysis. Psycho-Oncology, 14, 771–785.CrossRefGoogle ScholarPubMed
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, 1105–1117.CrossRefGoogle ScholarPubMed
Goldstein, N., Concato, J., Fried, T.R., et al. (2004). Factors associated with caregiver burden among caregivers of terminally ill patients with cancer. Journal of Palliative Care, 20, 38–43.CrossRefGoogle ScholarPubMed
Gomes, B. & Higginson, I.J. (2006). Factors influencing death at home in terminally ill patients with cancer: systematic review. British Medical Journal, 332, 515–521.CrossRefGoogle ScholarPubMed
Gray, L.C., Berg, K., Fries, B.E., et al. (2009). Sharing clinical information across care settings: The birth of an integrated assessment system. BioMed Central Health Services Research, 9, 71.CrossRefGoogle ScholarPubMed
Higginson, I.J. & Sen-Gupta, G.J.A. (2000). Place of care in advanced cancer: A qualitative systematic literature review of patient preferences. Journal of Palliative Medicine, 3, 287–300.CrossRefGoogle Scholar
Hirdes, J.P. (2006). Addressing the health needs of frail elderly people: Ontario's experience with an integrated health information system. Age and Ageing, 35, 329–331.CrossRefGoogle ScholarPubMed
Hirdes, J.P., Ljunggren, G., Morris, J.N., et al. (2008). Reliability of the interRAI suite of assessment instruments: A 12-country study of an integrated health information system. BioMed Central Health Services Research, 8, 277.CrossRefGoogle ScholarPubMed
Hirdes, J.P., Frijters, D.H. & Teare, G.F. (2003). The MDS-CHESS scale: A new measure to predict mortality in institutionalized older people. Journal of the American Geriatric Society, 51, 96–100.CrossRefGoogle Scholar
Hirst, M. (2005). Carer distress: A prospective, population-based study. Social Science & Medicine, 61, 697–708.CrossRefGoogle ScholarPubMed
Hwang, S., Chang, V.T., Alejandro, Y., et al. (2003). Caregiver unmet needs, burden, and satisfaction in symptomatic advanced cancer patients at a VA medical center. Palliative & Supportive Care, 1, 319–329.CrossRefGoogle Scholar
Kristjanson, L. & Aoun, S. (2004). Palliative care for families: Remembering the hidden patients. Canadian Journal of Psychiatry, 49, 359–365.CrossRefGoogle ScholarPubMed
Landi, F., Tua, E., Onder, G., et al. (2000). Minimum data set for home care: a valid instrument to assess frail older people living in the community. Medical Care, 38, 1184–1190.CrossRefGoogle ScholarPubMed
McWilliam, C.L. & Sangster, J.F. (1994). Managing patient discharge to home: The challenges of achieving quality care. International Journal for Quality in Health Care, 6, 147–161.CrossRefGoogle Scholar
Morris, J., Fries, B.E. & Morris, S.A. (1999). Scaling ADLs within the MDS. Journal of Gerontology A Biological Sciences54A, M546–M553.CrossRefGoogle ScholarPubMed
Morris, J.N., Fries, B.E., Mehr, D.R., et al. (1994). MDS cognitive performance scale. Journal of Gerontology, 49, M174–182.CrossRefGoogle ScholarPubMed
Pinquart, M. & Sorenson, S. (2003). Associations of Stressors and uplifts of care giving with caregiver burden and depressive mood. The Journal of Gerontology, 58B, P112–P128.CrossRefGoogle Scholar
Ramirez, A., Addington-Hall, J. & Richards, M. (1998). ABC of Palliative Care: The Carers. British Medical Journal, 316, 208–211.CrossRefGoogle ScholarPubMed
Spillman, B.C. & Black, K.J. (2005). Staying the Course: Trends in Family Caregiving. Washington, DC: AARP.Google Scholar
Steel, K., Ljunggren, G., Topinkova, E., et al. (2003). The RAI-PC: An assessment instrument for palliative care in all settings. Journal of Hospice and Palliative Care, 20, 211–219.CrossRefGoogle ScholarPubMed
Tilden, V., Tolle, S., Drach, L., et al. (2004). Out-of-hospital death: Advance care planning, decedent symptoms and caregiver burden. Journal of the American Geriatrics Society, 52, 532–539.CrossRefGoogle ScholarPubMed
Vitaliano, P.P., Zhang, J. & Scanlan, J.M. (2003). Is caregiving hazardous to one's physical health? A meta-analysis. Psychological Bulletin, 129, 946–972.CrossRefGoogle ScholarPubMed
Weaver, F.M., Perloff, L. & Waters, T. (1998). Patients' and caregivers' transition from hospital to home: needs and recommendations. Home Health Care Services Quarterly, 17, 27–48.CrossRefGoogle ScholarPubMed
Wiles, J. (2003). Informal caregivers' experiences of formal support in a changing context. Health and Social Care in the Community, 11, 189–207.CrossRefGoogle Scholar
Wilkinson, A. & Lynn, J. (2005). Caregiving for advanced chronic illness patients. Techniques in Regional Anesthesia and Pain Management, 9, 122–132.CrossRefGoogle Scholar