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Toward a model of continuous care: A necessity for caregiving partners

Published online by Cambridge University Press:  11 February 2015

Melissa P. Masterson ,
Karen E. Hurley ,
Talia Zaider  and
David W. Kissane
Melissa P. Masterson*
Affiliation:
Department of Psychiatry & Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, New York Department of Clinical Psychology, Fordham University, Bronx, New York
Karen E. Hurley
Affiliation:
Department of Psychiatry & Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, New York Teachers College, Columbia University, New York, New York
Talia Zaider
Affiliation:
Department of Psychiatry & Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, New York
David W. Kissane
Affiliation:
Faculty of Medicine, Nursing and Health Sciences, School of Psychology and Psychiatry, Monash University, Clayton, Victoria, Canada Department of Psychiatry, Weill Medical College of Cornell University, New York, New York
*
Address correspondence and reprint requests to: Melissa P. Masterson, Department of Psychiatry & Behavioral Sciences, Memorial Sloan Kettering Cancer Center, 641 Lexington Avenue, 7th Floor, New York, New York 10022. E-Mail: [email protected]
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Abstract

Objective:

Caregiving partners constitute a unique group, who provide both physical and emotional care for patients. There has been extensive research conducted on caregivers during either the caregiving or bereavement phase; however, these phases are often treated as separate entities rather than as part of a continuum.

Method:

In this paper, utilizing relevant literature and clinical observations, we map the emotional journey and lived experience of caregivers moving from disease progression, to the end of life, to the dying process itself, and then through life after the death of a partner. Along this journey, we identify the links between pre-death caregiving and bereavement.

Results:

Our illustration raises awareness regarding the unmet needs experienced by caregiving partners across the continuum and provides an alternative framework through which clinicians can view this course.

Significance:

of Results We bolster arguments for improved palliative care services and early interventions with distressed caregiving partners by emphasizing continuity of care both before and after a patient's death.

Keywords

CaregivingBereavementContinuity of carePartners
Type
Review Article
Information
Palliative & Supportive Care , Volume 13 , Issue 5 , October 2015 , pp. 1459 - 1467
Copyright
Copyright © Cambridge University Press 2015 

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References

REFERENCES

Allen, S.M. (1994). Gender differences in spousal caregiving and unmet need for care. Journal of Gerontology, 49(4), 187–195.Google Scholar
Bauer, J. & Bonanno, G.A. (2001). I can, I do, I am: The narrative differentiation of self-efficacy and other self-evaluations while adapting to bereavement. Journal of Research in Personality, 35, 424–448.Google Scholar
Bednard-DuBenske, L.L., Wen, K., 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.CrossRefGoogle Scholar
Beng, T.S., Guan, C., Seang, L.K., et al. (2013). The experiences of suffering of palliative care informal caregivers in Malaysia: A thematic analysis. The American Journal of Hospice & Palliative Care, 30(5), 473–489.CrossRefGoogle ScholarPubMed
Bonanno, G.A., Wortman, C.B. & Nesse, R.M. (2004). Prospective patterns of resilience and maladjustment during widowhood. Psychology and Aging, 19(2), 260–271.Google Scholar
Braun, M., Mikulincer, M., Rydall, A., et al. (2007). Hidden morbidity in cancer: Spouse caregivers. Journal of Clinical Oncology, 25(30), 4829–4834.Google Scholar
Carlsson, M.E. & Nilsson, I.M. (2007). Bereaved spouses' adjustment after the patients' death in palliative care. Palliative & Supportive Care, 5, 397–404.Google Scholar
Collins, C., Liken, M., King, S., et al. (1993). Loss and grief among family caregivers of relatives with dementia. Qualitative Health Research, 3(2), 236–253.CrossRefGoogle Scholar
Croog, S.H., Burleson, J.A., Sudilovsky, A., et al. (2006). Spouse caregivers of Alzheimer patients: Problem responses to caregiver burden. Aging & Mental Health, 10(2), 87–100.Google Scholar
Duke, S. (2002). An exploration of anticipatory grief: The lived experience of people during their spouses' terminal illness and in bereavement. Journal of Advanced Nursing, 28(4), 829–839.CrossRefGoogle Scholar
Folkman, S., Lazarus, R.S., Dunkel-Schetter, C., et al. (1986). Dynamics of a stressful encounter: Cognitive appraisal, coping, and encountering outcomes. Journal of Personality and Social Psychology, 50(5), 992–1003.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), 1105–1115.Google Scholar
Haley, W.E., LaMonde, L.A., Han, B., et al. (2003). Predictors of depression and life satisfaction among spousal caregivers in hospice: Application of a stress process model. Journal of Palliative Medicine, 6(2), 215–224.Google Scholar
Holland, J.M., Thompson, C., Rozalski, V., et al. (2013). Bereavement-related regret trajectories among older adults. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 69(1), 41–47.Google Scholar
Holley, C.K. & Mast, B.T. (2009). The impact of anticipatory grief on caregiver burden in dementia caregivers. The Gerontologist, 49(3), 388–396.Google Scholar
Ishida, M., Onishi, H., Matsubara, M., et al. (2012). Psychological distress of the bereaved seeking medical counseling at a cancer center. Japanese Journal of Clinical Oncology, 42(6), 506–512.Google Scholar
Kim, Y. & Carver, C.S. (2012). Recognizing the value and needs of the caregiver in oncology. Current Opinion in Supportive and Palliative Care, 6(2), 280–288.Google Scholar
Lee, K.C., Chang, W., Chou, W., et al. (2013). Longitudinal changes and predictors of caregiving burden while providing end-of-life care for terminally ill cancer patients. Journal of Palliative Medicine, 16(6), 632–637.Google Scholar
Li, L.W. (2005). From caregiving to bereavement: Trajectories of depressive symptoms among wife and daughter caregivers. Journal of Gerontology, 60B(4), P190–P198.CrossRefGoogle Scholar
Lichtenthal, W.G. & Sweeney, C. (in progress). Families “at risk” of complicated bereavement.Google Scholar
Ling, S., Chen, M., Li, C., et al. (2013). Trajectory and influencing factors of depressive symptoms in family caregivers before and after the death of terminally ill patients with cancer. Oncology Nursing Forum, 40(1), E32–E40.Google Scholar
Masterson, M.P., Schuler, T.A. & Kissane, D.W. (2013). Family focused grief therapy: A versatile intervention in palliative care and bereavement. Bereavement Care, 32(3), 117–123.Google Scholar
Matthews, A. (2003). Role of gender differences in cancer-related distress: A comparison of survivor and caregiver self-reports. Oncology Nursing Forum, 30(3), 493–499.CrossRefGoogle ScholarPubMed
Milberg, A., Strang, P. & Jakobsson, M. (2004). Next of kin's experience of powerlessness and helplessness in palliative home care. Supportive Cancer in Care, 12, 120–128.Google Scholar
Navaie-Waliser, M., Spriggs, A. & Felman, P. (2002). Informal caregiving: Differential experiences by gender. Medical Care, 40(12), 1249–1259.CrossRefGoogle ScholarPubMed
Pusa, S., Persson, C. & Sundin, K. (2012). Significant others' lived experiences following a lung cancer trajectory: From diagnosis through and after the death of a family member. European Journal of Oncology Nursing, 16, 34–41.Google Scholar
Schulz, R., Mendelsohn, A.B., Haley, W.E., et al. (2003). End-of-life care and the effects of bereavement on family caregivers of persons with dementia. The New England Journal of Medicine, 349, 1936–1942.Google Scholar
Stroebe, M., Stroebe, W. & Schut, H. (2001). Gender differences in adjustment to bereavement: An empirical and theoretical review. Review of General Psychology, 5(1), 62–83.Google Scholar
van Baarsen, B. (2002). Theories on coping with loss: The impact of social support and self-esteem on adjustment to emotional and societal loneliness following a partner's death in later life. Journal of Gerontology, 57B(1), S33–S42.Google Scholar
Yamagishi, A., Morita, T., Miyashita, M., et al. (2010). The care strategy for families of terminally ill cancer patients who become unable to take nourishment orally: Recommendations from a nationwide survey of bereaved family members' experiences. Journal of Pain and Symptom Management, 40(5), 671–683.Google Scholar