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Preliminary study of themes of meaning and psychosocial service use among informal cancer caregivers

Published online by Cambridge University Press:  07 August 2013

Allison J. Applebaum ,
Carol J. Farran ,
Allison M. Marziliano ,
Anna R. Pasternak  and
William Breitbart
Allison J. Applebaum*
Affiliation:
Memorial Sloan-Kettering Cancer Center, New York, New York
Carol J. Farran
Affiliation:
Rush University, Chicago, Illinois
Allison M. Marziliano
Affiliation:
Memorial Sloan-Kettering Cancer Center, New York, New York
Anna R. Pasternak
Affiliation:
Dartmouth College, Hanover, New Hampshire
William Breitbart
Affiliation:
Memorial Sloan-Kettering Cancer Center, New York, New York
*
Address correspondence and reprint requests to: Allison J. Applebaum, Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, 641 Lexington Avenue, 7th Floor, New York, N.Y. 10022. E-mail: applebaa@mskcc.org
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Abstract

Objective:

The burden experienced by informal caregivers (ICs) of patients with advanced cancer is well documented. ICs are at risk for anxiety and depression, as well as existential concerns that arise when a loved one is facing a terminal illness. Few psychosocial interventions focus on existential concerns of ICs. However, a growing body of literature indicates that finding meaning in the experience of being an IC for a person with cancer has the potential to buffer against burden. The purpose of this study was to collect preliminary descriptive data regarding caregiver burden, meaning, and psychosocial service use to inform the adaptation of a meaning-centered intervention for ICs.

Method:

Twenty-five caregivers and 32 patients completed brief, anonymous questionnaires that asked about their role as a caregiver or their perception of their loved one as a caregiver, caregiver burden, and psychosocial service use.

Results:

Caregivers and patients identified anxiety and depression as top correlates of burden experienced by caregivers, whereas guilt, issues with role/sense of identity, and self-care were additional areas of concern. The majority of caregivers were not receiving psychosocial services, although they almost unanimously reported desiring services. A greater proportion of patients than caregivers believed that an intervention designed to enhance meaning would ameliorate burden, but, nevertheless, close to three quarters of caregivers reported interest in participating in such an intervention.

Significance of results:

These study findings provide further support for, at a minimum, engaging ICs of persons with advanced cancer in interventions that address existential issues, mental health, self-care, and service use. Such interventions are likely to improve the quality of life of both patients with cancer and their ICs.

Keywords

Cancer caregiverCaregiver burdenMeaningPsychosocial service use
Type
Original Articles
Information
Palliative & Supportive Care , Volume 12 , Issue 2 , April 2014 , pp. 139 - 148
Copyright
Copyright © Cambridge University Press 2013 

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References

REFERENCES

Applebaum, A. & Breitbart, W.S. (2012). Care for the cancer caregiver: A critical review. Palliative & Supportive Care, 10, 1–22.Google Scholar
Applebaum, A., Duhamel, K., Winkel, G., et al. (2012). The role of therapeutic alliance in telephone-administered cognitive-behavioral therapy for hematopoietic SCT survivors. Journal of Clinical and Consulting Psychology, 80, 811–816.CrossRefGoogle Scholar
Applebaum, A., Lichtenthal, W., Pessin, H., et al. (2011). Factors associated with attrition from a randomized controlled trial of Meaning-Centered Group Psychotherapy for patients with advanced cancer. Psychooncology, 21, 1195–1204.CrossRefGoogle ScholarPubMed
Aoun, S.M., Kristjanson, L.J., Currow, D.C., et al. (2005). Caregiving for the terminally ill: At what cost? Journal of Palliative Medicine, 19, 551–555.CrossRefGoogle ScholarPubMed
Ayres, L. (2000). Narratives of family caregiving: Four story types. Research in Nursing and Health, 23, 359–371.3.0.CO;2-J>CrossRefGoogle ScholarPubMed
Bauer-Wu, S. & Farran, C.J. (2005). Meaning in life and psycho-spiritual functioning: A comparison of breast cancer survivors and healthy women. Journal of Holistic Nursing, 23, 172–190.CrossRefGoogle ScholarPubMed
Bishop, M.M., Beaumont, J.L., Hahn, E.A., et al. (2007). Late effects of cancer and hematopoietic stem-cell transplantation on spouses or partners compared with survivors and survivor-matched controls. Journal of Clinical Oncology, 25, 1403–1411.CrossRefGoogle ScholarPubMed
Breitbart, W., Poppito, S., Rosenfeld, B., et al. (2012). Pilot randomized controlled trial of individual meaning-centered psychotherapy for patients with advanced cancer. Journal of Clinical Oncology, 30, 1304–1309.CrossRefGoogle ScholarPubMed
Breitbart, W., Rosenfeld, B., Gibson, C., et al. (2010). Meaning-centered group psychotherapy for patients with advanced cancer: A randomized controlled trial Psychoongology, 19, 21–28.CrossRefGoogle Scholar
Calhoun, L.G. & Tedeschi, R.G. (2006). The foundations of posttraumatic growth: An expanded framework. In Handbook of Posttraumatic Growth. Calhoun, L.G. & Tedeschi, R. G. (eds.), Mahwah, NJ: Lawrence Erlbaum Associates.Google Scholar
Carlson, L.E., Ottenbreit, N., St. Pierre, M., et al. (2001). Partner understanding of the breast and prostate cancer experience. Cancer Nursing, 24, 231–239.CrossRefGoogle ScholarPubMed
Cherlin, E.J., Barry, C.L., Prigerson, H.G., et al. (2007). Bereavement services for family caregivers: How often used, why and why not? Journal of Palliative Medicine, 10, 148–158.CrossRefGoogle ScholarPubMed
Christakis, N.A. & Allison, P.D. (2006). Mortality after the hospitalization of a spouse. New England Journal of Medicine, 354, 719–730.CrossRefGoogle ScholarPubMed
Covinsky, K.E., Goldman, L., Cook, E.F., et al. (1994). The impact of serious illness on patients' families. Journal of the American Medical Association, 272, 1839–1844.CrossRefGoogle ScholarPubMed
Duggleby, W., Wright, K., Williams, A., et al. (2007). Developing a living with hope program for caregivers of family members with advanced cancer. Journal of Palliative Care, 23, 24–31.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
Farran, C.J., Keane-Hagerty, E., Salloway, S., et al. (1991). Finding meaning: An alternative paradigm for Alzheimer's disease family caregivers. Gerontologist, 31, 483–489.CrossRefGoogle ScholarPubMed
Folkman, S., Chesney, M.A. & Richards, A.C. (1994). Stress and coping in caregiving partners of men with AIDS. Psychiatric Clinics of North America, 17, 35–53.CrossRefGoogle ScholarPubMed
Francis, L., Worthington, J., Kypriotakis, G., et al. (2010). Relationship quality and burden among caregivers for late-stage cancer patients. Supportive Care in Cancer, 18, 1429–1436.CrossRefGoogle ScholarPubMed
Frankl, V.E. (1963). Man's Search for Meaning. New York: Washington Sqaure Press.Google Scholar
Frankl, V.E. (1973). Meaninglessness: A challenge to psychologists. In Theories of Psychopathology and Personality. Millon, T. (ed.), Philadelphia: Saunders.Google Scholar
Frankl, V.E. (1967). Psychotherapy and Existentialism. New York: Washington Square Press.Google Scholar
Frankl, V.E. (1978). The Unheard Cry for Meaning. New York: Washington Square Press.Google Scholar
Garlo, K., O'Leary, J.R., Van Ness, P.H., et al. (2010). Burden in caregivers of older adults with advanced illness. Journal of the American Geriatrics Society, 58, 2315–2322.CrossRefGoogle ScholarPubMed
Given, B., Given, C.W., Kozachik, S., et al. (2001). Family support in advanced cancer. Cancer Journal for Clinicians, 51, 213–231.CrossRefGoogle ScholarPubMed
Grunfeld, E., Coyle, D., Whelan, T., et al. (2004). Family caregiver burden: Results of a longitudinal study of breast cancer patients and their principal caregivers. Canadian Medical Association Journal, 170, 1795–1801.CrossRefGoogle ScholarPubMed
Hauser, J.M. & Kramer, B.J. (2004). Family caregivers in palliative care. Clinical Geriatric Medicine, 20, 671–688.CrossRefGoogle ScholarPubMed
Hayman, J.A., Langa, K.M., Kabeto, M.U., et al. (2001). Estimating the cost of informal caregiving for elderly patients with cancer. Journal of Clinical Oncology, 19, 3219–3225.CrossRefGoogle ScholarPubMed
Hileman, J.W., Lackey, N.R., Hassanein, R.S., et al. (1992). Identifying the needs of home caregivers of patients with cancer. Oncology Nursing Forum, 19, 771–777.Google ScholarPubMed
Hinds, C. (1985). The needs of families who care for patients with cancer at home: Are we meeting them? Journal of Advanced Nursing, 10, 575–581.CrossRefGoogle Scholar
Hodgkinson, K., Butow, P., Hobbs, K.M., et al. (2007). After cancer: The unmet supportive care needs of survivors and their partners. Journal of Psychosocial Oncology, 25, 89–104.CrossRefGoogle ScholarPubMed
Hudson, P.L., Aranda, S., & Kristjanson, L.J. (2004). Meeting the supportive needs of family caregivers in palliative care: Challenges for health professionals. Journal of Palliative Medicine, 7, 19–25.CrossRefGoogle ScholarPubMed
Hudson, P.L., Hayman-White, K., Aranda, S., et al. (2006). Predicting family caregiver psycholosocial functioning in palliative care. Journal of Palliative Care, 22, 133–140.CrossRefGoogle Scholar
Institute of Medicine (2008). Retooling for an Aging America: Building the Health Care Workforce. Washington, DC: The National Academies Press.Google Scholar
Janda, M., Eakin, E.G., Bailey, L., et al. (2006). Supportive care needs of people with brain tumours and their carers. Supportive Care in Cancer, 14, 1094–1103.CrossRefGoogle ScholarPubMed
Keir, S.T. (2007). Levels of stress and intervention preferences of caregivers of brain tumor patients. Cancer Nursing, 30, E33–39.CrossRefGoogle ScholarPubMed
Kim, Y. & Given, B.A. (2008). Quality of life of family caregivers of cancer survivors across the trajectory of the illness. Cancer, 112, 2556–2568.CrossRefGoogle ScholarPubMed
Kissane, D., Bloch, S., Burns, W.I., et al. (1994). Psychological morbidity in the families of patients with cancer. Psychooncology, 3, 47–56.CrossRefGoogle Scholar
Kozachik, S.L., Wyatt, G., Given, C.W., et al. (2006). Patterns of use of complimentary therapies among cancer patients and their family caregivers. Cancer Nursing, 29, 84–94.CrossRefGoogle Scholar
Laizner, A.M., Yost, L.M., Barg, F.K., et al. (1993). Needs of family caregivers of persons with cancer: A review. Seminars in Oncology Nursing, 9, 114–120.CrossRefGoogle ScholarPubMed
Lazarus, R.S. & Folkman, S. (1984). Stress, Appraisal and Coping. New York: Springer Publishing Company, Inc.Google Scholar
Levy, L.H. & Derby, J.F. (1992). Bereavement support groups: Who joins; who does not; and why. American Journal of Community Psychology, 20, 649–662.CrossRefGoogle Scholar
Lichtenthal, W.G., Nilsson, M., Kissane, D.W., et al. (2011). Underutilization of mental health services among bereaved caregivers with prolonged grief disorder. Psychiatric Services, 62, 1225–1229.CrossRefGoogle ScholarPubMed
Lichtenthal, W.G., Poppito, S., Olden, M., et al. (2009). Effects of meaning-centered psychotherapy on facets of meaning among advanced cancer patients: A closer look at the FACIT-Sp. Poster presented at the 30th Annual Meeting of the Society of Behavioral Medicine, Montreal, QC, Canada.Google Scholar
Lichtenthal, W.G., Poppito, S., Olden, M., et al. (2008). Facets of meaning: Differential effects of meaning-centered psychotherapy among advanced cancer patients. Poster presented at the Association for Death Education and Counseling 30th Annual Conference, Montreal, QC, Canada.Google Scholar
Manne, S., Ostroff, J., Winkel, G., et al. (2004). Posttraumatic growth after breast cancer: Patient, partner and couple perspectives. Psychosomatic Medicine, 66, 442–454.Google Scholar
McLean, L., Jones, J., Rydall, A., et al. (2008). A couples intervention for patients facing advanced cancer and their spouse caregivers: Outcomes of a pilot study. Psychooncology, 17, 1152–1156.CrossRefGoogle ScholarPubMed
Mezue, W.C., Draper, P., Watson, R., et al. (2011). Caring for patients with brain tumor: The patient and caregiver perspectives. Nigerian Journal of Clinical Practice, 14, 368–372.CrossRefGoogle Scholar
Morse, S.R. & Fife, B. (1998). Coping with a partner's cancer: Adjustment at four stages of the illness trajectory. Oncology Nursing Forum, 25, 751–760.Google ScholarPubMed
National Alliance for Caregiving, in Collaboration with AARP (2009). Caregiving in the U.S., 2009. http://www.caregiving.org/data/CaregivingUSAllAgesExecSum.pdfGoogle Scholar
Nijboer, C., Triemstra, M., Tempelaar, R., et al. (2000). Patterns of caregiver experiences among partners of cancer patients. Gerontologist, 40, 738–746.CrossRefGoogle ScholarPubMed
Northouse, L.L. (1984). The impact of cancer on the family: An overview. International Journal of Psychiatric Medicine, 14, 215–242.CrossRefGoogle Scholar
Northouse, L., Kershaw, T., Mood, D., et al. (2005). Effects of a family intervention on the quality of life of women with recurrent breast cancer and their family caregivers. Psychooncology, 14, 478–491.CrossRefGoogle ScholarPubMed
Northouse, L., Mood, D., Templin, T., et al. (2000). Couples' patterns of adjustment to colon cancer. Social Science and Medicine, 50, 271–284.CrossRefGoogle ScholarPubMed
Palos, G.R., Mendoza, T.R., Liao, K.P., et al. (2011). Caregiver symptom burden: The risk of caring for an underserved patient with advanced cancer. Cancer, 117, 1070–1079.CrossRefGoogle ScholarPubMed
Pargament, K.I. & Ano, G.G. (2006). Spiritual resources and struggles in coping with medical illness. Southern Medical Journal, 99, 1161–1162.CrossRefGoogle ScholarPubMed
Park, C.L. & Folkman, S. (1997). Stability and change in psychological resources during caregiving and bereavement in partners of men with AIDS. Journal of Personality, 65, 421–447.CrossRefGoogle ScholarPubMed
Park, C.H., Shin, D.W., Choi, J.Y., et al. (2010). Determinants of the burden and positivity of family caregivers of terminally ill cancer patients in Korea. Psychooncology, 21, 282–290.CrossRefGoogle ScholarPubMed
Parvataneni, R., Polley, M.Y., Freeman, T., et al. (2011). Identifying the needs of brain tumor patients and their caregivers. Journal of Neurooncology, 104, 737–744.CrossRefGoogle ScholarPubMed
Pearlin, L.I., Mullan, J.T., Semple, S.J., et al. (1990). Caregiving and the stress process: An overview of concepts and their measures. Gerontologist, 30, 583–594.CrossRefGoogle ScholarPubMed
Pinquart, M., & Sorensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18, 250–267.CrossRefGoogle ScholarPubMed
Rabow, M.W., Hauser, J.M., & Adams, J. (2004). Supporting family caregivers at the end of life: “They don't know what they don't know.” Journal of the American Medical Association, 291, 483–491.CrossRefGoogle Scholar
Rhoades, D.R., & McFarland, K.F. (1999). Caregiver meaning: A study of caregivers of individuals with mental illness. Health and Social Work, 24, 281–289.CrossRefGoogle ScholarPubMed
Rohleder, N., Marin, T.J., Ma, R., et al. (2009). Biologic cost of caring for a cancer patient: Dysregulation of pro- and anti-inflammatory signaling pathways. Journal of Clinical Oncology, 27, 2909–2915.CrossRefGoogle ScholarPubMed
Scott, J., Halford, W.K., & Ward, B. (2004). United we stand? The effects of a couple-coping intervention on adjustment to early stage breast or gynecological cancer. Journal of Consulting and Clinical Psychology, 72, 1122–1135.CrossRefGoogle ScholarPubMed
Surbone, A., Baider, L., Weitzman, T., et al. (2010). Psychosocial care for patients and their families is integral to supportive care in cancer: MASCC position statement. Supportive Care in Cancer, 18, 255–263.CrossRefGoogle ScholarPubMed
Tamayo, G.J., Broxson, A., Munsell, M., et al. (2010). Caring for the caregiver. Oncology Nursing Forum, 37, E50–57.CrossRefGoogle ScholarPubMed
Thornton, A.A. & Perez, M.A. (2006). Posttraumatic growth in prostate cancer survivors and their partners. Psychooncology,15, 285–296.CrossRefGoogle ScholarPubMed
Toseland, R.W., Blanchard, C.G., & McCallion, P. (1995). A problem solving intervention for caregivers of cancer patients. Social Science and Medicine, 40, 517–528.CrossRefGoogle ScholarPubMed
Vanderwerker, L.C., Laff, R.E., Kodan-Lottick, N.S., et al. (2005). Psychiatric disorders and mental health service use among caregivers of advanced cancer patients. Journal of Clinical Oncology, 23, 6899–6907.CrossRefGoogle ScholarPubMed
Van Houtven, C.H., Ramsey, S.D., Hornbrook, M.C., et al. (2010). Economic burden for informal caregivers of lung and colorectal cancer patients. Oncologist, 15, 883–893.CrossRefGoogle ScholarPubMed
Yabroff, K.R., & Kim, Y. (2009). Time costs associated with informal caregiving for cancer survivors. Cancer, 115, 4362–4373.CrossRefGoogle ScholarPubMed