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Existential behavioral therapy for informal caregivers of palliative patients: Barriers and promoters of support utilization

Published online by Cambridge University Press:  06 June 2014

Tamara Thurn
Affiliation:
Department of Palliative Medicine, Ludwig–Maximilians–University, Munich, Germany
Monika Brandstätter
Affiliation:
Department of Palliative Medicine, Ludwig–Maximilians–University, Munich, Germany
Veronika Fensterer
Affiliation:
Statistical Consulting Unit, Department of Statistics, Ludwig–Maximilians–University, Munich, Germany
Helmut Küchenhoff
Affiliation:
Statistical Consulting Unit, Department of Statistics, Ludwig–Maximilians–University, Munich, Germany
Martin Johannes Fegg*
Affiliation:
Department of Palliative Medicine, Ludwig–Maximilians–University, Munich, Germany
*
Address correspondence and reprint requests to: Martin Fegg, Department of Palliative Medicine, Ludwig–Maximilians–University Munich, Marchioninistr. 15, 81377 Munich, Germany. E-mail: [email protected]. Website: www.meaninginlife.info

Abstract

Objective:

Several interventions have been developed during recent years to support informal caregivers of palliative patients. However, these trials reported low enrollment rates. Employing a newly developed group intervention, existential behavioral therapy (EBT), one study reported that only 13.6% of approached informal caregivers participated. The purpose of our present study was to identify the reasons for this low enrollment rate in order to improve future support designs.

Method:

All participants in the EBT trial (intervention vs. standard-care control group) as well as those who declined participation during a 4-month recruitment period were studied prospectively over 12 months. Andersen's behavioral model of healthcare service use was employed to identify group differences between acceptors and decliners: predisposing (age, gender, education, family status, relationship), enabling (social support, distance to hospital, caring vs. bereaved), and need factors (psychological distress, quality of life) were evaluated in a binary-logistic model.

Results:

Some 94 decliners were compared to 160 EBT participants (n = 81 intervention, n = 79 control). Caregivers who took part were significantly more distressed and suffered from a lower quality of life compared to decliners. Not only these need factors but also predisposing (age <55 years) and enabling (use of social/professional support, familiarity with caregiving institution) factors were associated with EBT utilization. At the 12-month follow-up, EBT intervention participants reported greater quality of life improvements than decliners or controls (p = 0.05). While all groups had mean anxiety scores below the cutoff at 12-month follow-up, decliners showed better improvement in anxiety compared to EBT participants (intervention p = 0.04, controls p = 0.03).

Significance of results:

On average, decliners are less burdened: they may be more resilient, may have better coping strategies, or already have a sufficient support network in place. Screening caregivers with regard to their experienced quality of life and targeting those in need, especially younger caregivers with low levels of quality of life, may help to allocate resources more appropriately.

Type
Original Articles
Copyright
Copyright © Cambridge University Press 2014 

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References

REFERENCES

Addis, M.E. & Mahalik, J.R. (2003). Men, masculinity, and the contexts of help seeking. The American Psychologist, 58, 514.Google Scholar
Andersen, R.M. (1995). Revisiting the behavioral model and access to medical care: Does it matter? Journal of Health and Social Behavior, 36, 110.Google Scholar
Andersen, R.M. (2008). National health surveys and the behavioral model of health services use. Medical Care, 46, 647653.Google Scholar
Applebaum, A. & Breitbart, W. (2013). Care for the cancer caregiver: A systematic review. Palliative & Supportive Care, 11, 231252.Google Scholar
Barker, C. & Pistrang, N. (2001). Psychotherapy and social support: Integrating research on psychological helping. Clinical Psychology Review, 22, 361379.Google Scholar
Benkel, I., Wijk, H. & Molander, U. (2009). Family and friends provide most social support for the bereaved. Palliative Medicine, 23, 141149.Google Scholar
Bergman, E., Haley, W.E. & Small, B.J. (2010). The role of grief, anxiety and depressive symptoms in the use of bereavement services. Death Studies, 34, 441458.Google Scholar
Bergman, E.J., Haley, W.E. & Small, B.J. (2011). Who uses bereavement services? An examination of service use by bereaved dementia caregivers. Aging & Mental Health, 15, 531540.Google Scholar
Candy, B., Jones, L., Drake, R., Leurent, B. & King, M. (2011). Interventions for supporting informal caregivers of patients in the terminal phase of a disease. The Cochrane Database of Systematic Reviews, 6, CD007617. doi: 10.1002/14651858.CD007617.pub2.Google Scholar
Chentsova-Dutton, Y., Shucter, S., Hutchin, S., et al. (2002). Depression and grief reactions in hospice caregivers: From pre-death to 1 year afterwards. Journal of Affective Disorders, 69, 5360.Google Scholar
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, 148158.Google Scholar
deBoer, A., Wijker, W. & deHaes, H. (1997). Predictors of healthcare utilization in the chronically ill: A review of the literature. Health Policy, 42, 101115.Google Scholar
Derogatis, L.R. & Melisaratos, N. (1983). The Brief Symptom Inventory: An introductory report. Psychological Medicine, 13, 595605.Google Scholar
Dhingra, S.S., Zack, M., Strine, T., et al. (2010). Determining prevalence and correlates of psychiatric treatment with Andersen's behavioral model of health services use. Psychiatric Services, 61, 524528.Google Scholar
Diener, E., Emmons, R.A., Larsen, R.J., et al. (1985). The Satisfaction With Life Scale. Journal of Personality Assessment, 49, 7175.Google Scholar
Fegg, M., Brandstätter, M., Kögler, M., et al. (2013). Existential behavioural therapy for informal caregivers of palliative patients: A randomised controlled trial. Psycho-Oncology, 22, 20792086.Google Scholar
Field, D., Payne, S., Relf, M., et al. (2007). Some issues in the provision of adult bereavement support by UK hospices. Social Science & Medicine, 64, 428438.Google Scholar
Gage, M.J. & Kinney, J.M. (1995). They aren't for everyone. Clinical Gerontologist, 16, 2134. Available at http://www.tandfonline.com/doi/abs/10.1300/J018v16n02_03?journalCode=wcli20#preview.Google Scholar
Galdas, P.M., Cheater, F. & Marshall, P. (2005). Men and health help-seeking behaviour: Literature review. Journal of Advanced Nursing, 49, 616623.Google Scholar
Greer, J.A., Jackson, V.A., Meier, D.E., et al. (2013). Early integration of palliative care services with standard oncology care for patients with advanced cancer. CA: A Cancer Journal for Clinicians, 63, 349363.Google Scholar
Harding, R. & Higginson, I. (2001). Working with ambivalence: Informal carers of patients at the end of life. Supportive Care in Cancer, 9, 642645.Google Scholar
Harding, R., Higginson, I., Leam, C., et al. (2004). Evaluation of a short-term group of intervention for informal carers of patients attending a home palliative care service. Journal of Pain and Symptom Management, 27, 396408.Google Scholar
Hayes, S. (2004). Acceptance and commitment therapy, relational frame theory, and the third wave of behavioral and cognitive therapies. Behavior Therapy, 35, 639665.Google Scholar
Henshaw, E.J. & Freedman-Doan, C.R. (2009). Conceptualizing mental health care utilization using the health belief model. Clinical Psychology: Science and Practice, 16, 420444.Google Scholar
Kissane, D.W., McKenzie, M., Bloch, S., et al. (2006). Family focused grief therapy: A randomized controlled trial in palliative care and bereavement. American Journal of Psychiatry, 163, 12081218.Google Scholar
Kögler, M., Brandl, J., Brandstätter, M., et al. (2013). Determinants of the effect of existential behavioral therapy for bereaved partners: A qualitative study. Journal of Palliative Medicine, 16, 14101416.Google Scholar
McNamara, B. & Rosenwax, L. (2010). Which carers of family members at the end of life need more support from health services and why? Social Science & Medicine, 70, 10351041.Google Scholar
Northouse, L.L., Katapodi, M.C., Sing, L., et al. (2010). Intervention with family caregivers of cancer patients. Meta-analysis of randomized trials. CA: A Cancer Journal for Clinicians, 30, 317339.Google Scholar
Oechsle, K., Goerth, K., Bokemeyer, C., et al. (2013). Symptom burden in palliative care patients: Perspectives of patients, their family caregivers, and their attending physicians. Supportive Care in Cancer, 21, 19551962.Google Scholar
Payne, S. (2010). White paper on improving support for family carers in palliative care: part 1: Recommendations from the European Association for Palliative Care (EAPC) Task Force on Family Carers. European Journal of Palliative Care, 17, 238245.Google Scholar
Phillips, K.A., Morrison, K.R., Andersen, R., et al. (1998). Understanding the context of healthcare utilization: Assessing environmental and provider-related variables in the behavioral model of utilization. Health Service Research, 33, 571596.Google Scholar
Pitceathly, C. & Maguire, P. (2003). The psychological impact of cancer on patients' partners and other key relatives: A review. European Journal of Cancer Care, 39, 15171524.Google Scholar
Rosenstock, I.M. (1966). Why people use health services. The Milbank Quarterly, 44, 94124.Google Scholar
Segal, D.L., Coolidge, F.L., Mincic, M.S., et al. (2005). Beliefs about mental illness and willingness to seek help: A cross-sectional study. Aging & Mental Health, 9, 363367.Google Scholar
Toseland, R.W., McCallion, P., Gerber, T., et al. (2002). Predictors of health and human services use by persons with dementia and their family caregivers. Social Science & Medicine, 55, 12551266.Google Scholar
Vanderwerker, L.C., Laff, R.E., Kadan-Lottick, N.S., et al. (2005). Psychiatric disorders and mental health service use among caregivers of advanced cancer patients. Journal of Clinical Oncology, 23, 68996907.Google Scholar
Weiss, T. & Holland, J. (2007). A single-item rapid screen for distress: Validation of the distress thermometer. Psycho-Oncology, 16, S10S11.Google Scholar
Wills, T.A. & Gibbons, F.X. (2009). Commentary: Using psychological theory in help-seeking research. Clinical Psychology: Science and Practice, 16, 440444.Google Scholar
Yalom, I. (1980). Existential psychotherapy. New York: Basic Books.Google Scholar
Zigmond, A. & Snaith, R. (1983). The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica, 67, 361370.Google Scholar