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Acceptance and valued living as critical appraisal and coping strengths for caregivers dealing with terminal illness and bereavement

Published online by Cambridge University Press:  30 April 2014

Esther L Davis ,
Frank P. Deane  and
Geoffrey C.B. Lyons
Esther L Davis*
Affiliation:
School of Psychology and Illawarra Institute for Mental Health, University of Wollongong, New South Wales, Australia
Frank P. Deane
Affiliation:
School of Psychology and Illawarra Institute for Mental Health, University of Wollongong, New South Wales, Australia
Geoffrey C.B. Lyons
Affiliation:
School of Psychology and Illawarra Institute for Mental Health, University of Wollongong, New South Wales, Australia
*
Address correspondence and reprint requests to: Esther Davis, Illawarra Institute for Mental Health (B22), University of WollongongNSW 2522. E-mail: eld458@uowmail.edu.au
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Abstract

Objective:

Informal caregivers of palliative care patients play an essential role in the coordination of care for patients during their final phases of life. However, undertaking a caregiving role can have enduring psychological consequences for caregivers and interfere with functioning. Studies have investigated a variety of factors associated with individual differences in caregiver psychosocial outcomes, but little is known about their relative impact, and there is a need for guiding models to support research in this area.

Method:

A review of the literature was conducted on factors influencing the psychological distress and grief of caregivers. Drawing from acceptance and commitment therapy (ACT) and Stroebe and colleagues' integrative risk factor framework, we developed a process model to describe individual differences in caregiver psychological distress and grief.

Results:

The model presents caregiver psychological distress and grief as functions of death attitudes and communication about death and dying, mediated by acceptance and valued living from an ACT perspective. An outline of the empirical and theoretical underpinnings for each component in the model is provided.

Significant of results:

The presented model is an inherently strengths-based model that is concordant with acceptance- and values- (ACT) based interventions to facilitate coping in caregivers.

Keywords

Palliative careCaregiverAcceptance and commitment therapyTheoretical model
Type
Review Article
Information
Palliative & Supportive Care , Volume 13 , Issue 2 , April 2015 , pp. 359 - 368
Copyright
Copyright © Cambridge University Press 2014 

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References

REFERENCES

Ardelt, M. (2008). Wisdom, religiosity, purpose in life, and death attitudes of aging adults. In Existential and spiritual issues in death attitudes. Tomer, A. et al. (eds.), pp. 139–158. Mahwah, NJ: Lawrence Erlbaum Associates.Google Scholar
Australian Institute of Health and Welfare (2013). Australia's welfare 2013. Australia's welfare series no. 11. Cat. no. AUS 174. Canberra: AIHW.Google Scholar
Bachner, Y.G., O'Rourke, N. & Carmel, S. (2011). Fear of death, mortality communication, and psychological distress among secular and religiously observant family caregivers of terminal cancer patients. Death Studies, 35(2), 163–187.CrossRefGoogle ScholarPubMed
Bahraini, N.H., Devore, M.D., Monteith, L.L., et al. (2013). The role of value importance and success in understanding suicidal ideation among veterans. Journal of Contextual Behavioral Science, 2, 1–2, 31–38.Google Scholar
Boelen, P.A. & Prigerson, H.G. (2007). The influence of symptoms of prolonged grief disorder, depression, and anxiety on quality of life among bereaved adults. European Archives of Psychiatry and Clinical Neuroscience, 257(8), 444–452.Google Scholar
Boelen, P.A., van den Bout, J. & van den Hout, M.A. (2010). A prospective examination of catastrophic misinterpretations and experiential avoidance in emotional distress following loss. Journal of Nervous and Mental Disease, 198(4), 252–257.Google Scholar
Bonanno, G.A., Wortman, C.B., Lehman, D.R., et al. (2002). Resilience to loss and chronic grief: A prospective study from preloss to 18-months postloss. Journal of Personality and Social Psychology, 83(5), 1150–1164.CrossRefGoogle ScholarPubMed
Boston, P., Bruce, R. & Schreiber, R. (2011). Existential suffering in the palliative care setting: An integrated literature review. Journal of Pain and Symptom Management, 41(3), 604–618.Google Scholar
Branstetter-Rost, A., Cushing, C. & Douleh, T. (2009). Personal values and pain tolerance: Does a values intervention add to acceptance? Journal of Pain, 10(8), 887–892.CrossRefGoogle ScholarPubMed
Bruce, C.A. (2002). The grief process for patient, family, and physician. The Journal of the American Osteopathic Association, 102(9Suppl. 3), S28–S32.Google ScholarPubMed
Candy, B., Jones, L., Drake, R., et al. (2011). Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database of Systematic Reviews, (6), CD007617. doi: 10.1002/14651858.CD007617.pub2.Google Scholar
Carers Australia (2010). The economic value of informal care in 2010. Report by Access Economics for Carers Australia.Google Scholar
Chan, D., Livingston, G., Jones, L., et al. (2013). Grief reactions in dementia carers: A systematic review. International Journal of Geriatric Psychiatry, 28(1), 1–17.Google Scholar
Chiambretto, P., Moroni, L., Guarnerio, C., et al. (2010). Prolonged grief and depression in caregivers of patients in vegetative state. Brain Injury, 24(4), 581–588.Google Scholar
Dobbs, D., Emmett, C.P., Hammarth, A., et al. (2012). Religiosity and death attitudes and engagement of advance care planning among chronically ill older adults. Research on Aging, 34(2), 113–130.Google Scholar
Ettema, E., Derksen, L. & Leeuwen, E. (2010). Existential loneliness and end-of-life care: A systematic review. Theoretical Medicine and Bioethics, 31(2), 141–169.Google Scholar
Feros, D.L., Lane, L., Ciarrochi, J., et al. (2011). Acceptance and commitment therapy (ACT) for improving the lives of cancer patients: A preliminary study. Psycho-Oncology, 22(2), 459–464.CrossRefGoogle ScholarPubMed
Fleming, F. & Robinson, P. (2001). Grief and cognitive-behavioral therapy: The reconstruction of meaning. In Handbook of bereavement research: Consequences, coping and care. Stroebe, M. et al. (eds.), pp. 647–669. Washington, DC: American Psychological Association.Google Scholar
Fried, T.R., Bradley, E.H., O'Leary, J.R., et al. (2005). Unmet desire for caregiver–patient communication and increased caregiver burden. Journal of the American Geriatrics Society, 53(1), 59–65.Google Scholar
Gauthier, L.R. & Gagliese, L. (2012). Bereavement interventions, end-of-life cancer care, and spousal well-being: A systematic review. Clinical Psychology: Science and Practice, 19(1), 72–92.Google Scholar
Glajchen, M., Fitzmartin, R.D., Blum, D., et al. (1995). Psychosocial barriers to cancer pain relief. Cancer Practice, 3(2), 76–82.Google Scholar
Gregg, J., Callaghan, G., Hayes, S., et al. (2007). Improving diabetes self-management through acceptance, mindfulness, and values: A randomized controlled trial. Journal of Consulting and Clinical Psychology, 75(2), 336–343.CrossRefGoogle ScholarPubMed
Guldin, M.-B., Vedsted, P., Zachariae, R., et al. (2012). Complicated grief and need for professional support in family caregivers of cancer patients in palliative care: A longitudinal cohort study. Supportive Care in Cancer, 20(8), 1679–1685.Google Scholar
Hagedoorn, M., Sanderman, R., Bolks, H.N., et al. (2008). Distress in couples coping with cancer: A meta-analysis and critical review of role and gender effects. Psychological Bulletin, 134(1), 1–30.CrossRefGoogle Scholar
Harding, R. & Higginson, I.J. (2003). What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliative Medicine, 17(1), 63–74.Google Scholar
Harding, R., List, S., Epiphaniou, E., et al. (2012). How can informal caregivers in cancer and palliative care be supported? An updated systematic literature review of interventions and their effectiveness. Palliative Medicine, 26(1), 7–22.Google Scholar
Harris, J., Bowen, D.J., Badr, H., et al. (2009). Family communication during the cancer experience. Journal of Health Communication, 14, 76–84.Google Scholar
Harris, R. (2006). Embracing your demons: An overview of acceptance and commitment therapy. Psychotherapy in Australia, 12(4), 2–8.Google Scholar
Harville, M., Stokes, S.J., Templer, D.I., et al. (2003). Relation of existential and religious variables to the Death Depression Scale–revised. Omega: The Journal of Death and Dying, 48(2), 165–184.Google Scholar
Hayes, S.C. (2004). Acceptance and commitment therapy, relational frame theory, and the third wave of behavioral and cognitive therapies. Behavior Therapy, 35(4), 639–665.Google Scholar
Hayes, S.C., Luoma, J.B., Bond, F.W., et al. (2006). Acceptance and commitment therapy: Model, processes and outcomes. Behaviour Research and Therapy, 44(1), 1–25.Google Scholar
Henriksson, A., Carlander, I. & Årestedt, K. (2013). Feelings of rewards among family caregivers during ongoing palliative care. Palliative & Supportive Care, 16, 1–9.Google Scholar
Higginson, I.J. & Costantini, M. (2002). Communication in end-of-life cancer care: A comparison of team assessments in three European countries. Journal of Clinical Oncology, 20(17), 3674–3682.Google Scholar
Higginson, I.J., Wade, A. & McCarthy, M. (1990). Palliative care: Views of patients and their families. BMJ, 301(6746), 277–281.CrossRefGoogle ScholarPubMed
Hogan, N.S. & Schmidt, L.A. (2002). Testing the grief to personal growth model using structural equation modeling. Death Studies, 26(8), 615–634.CrossRefGoogle ScholarPubMed
Hudson, P.L., Remedios, C., Zordan, R., et al. (2012). Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. Journal of Palliative Medicine, 15(6), 696–702.Google Scholar
Janoff-Bulman, R. (1992). Shattered assumptions: Towards a new psychology of trauma. New York: Free Press.Google Scholar
Kashdan, T.B. & Rottenberg, J. (2010). Psychological flexibility as a fundamental aspect of health. Clinical Psychology Review, 30(7), 865–878.CrossRefGoogle ScholarPubMed
Kilpatrick, M.G., Kristjanson, L.J., Tataryn, D.J., et al. (1998). Information needs of husbands of women with breast cancer. Oncology Nursing Forum, 25(9), 1595–1601.Google Scholar
Knight, K.H., Elfenbein, M.H. & Capozzi, L. (2000). Relationship of recollections of first death experience to current death attitudes. Death Studies, 24(3), 201–221.Google ScholarPubMed
Kramer, B.J., Kavanaugh, M., Trentham-Dietz, A., et al. (2010 a). Complicated grief symptoms in caregivers of persons with lung cancer: the role of family conflict, intrapsychic strains, and hospice utilization. Omega: The Journal of Death and Dying, 62(3), 201–220.Google Scholar
Kramer, B.J., Kavanaugh, M., Trentham-Dietz, A., et al. (2010 b). Predictors of family conflict at the end of life: The experience of spouses and adult children of persons with lung cancer. The Gerontologist, 50(2), 215–225.Google Scholar
LeMay, K. & Wilson, K.G. (2008). Treatment of existential distress in life threatening illness: A review of manualized interventions. Clinical Psychology Review, 28(3), 472–493.Google Scholar
Li, R., Cooper, C., Bradley, J., et al. (2012). Coping strategies and psychological morbidity in family carers of people with dementia: A systematic review and meta-analysis. Journal of Affective Disorders, 139(1), 1–11.Google 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(10), 1225–1229.Google Scholar
Lynn, J. (2005). Living long in fragile health: The new demographics shape end of life care. Improving end of life care: Why has it been so difficult? Hastings Centre Report, Special Report 35, No. 6, S14–S18.Google Scholar
McGuire, D.B., Grant, M. & Park, J. (2012). Palliative care and end of life: The caregiver. Nursing Outlook, 60(6), 351–356.Google Scholar
Melin-Johansson, C., Henoch, I., Strang, S., et al. (2012). Living in the presence of death: An integrative literature review of relatives' important existential concerns when caring for a severely ill family member. The Open Nursing Journal, 6, 1–12.Google Scholar
Milberg, A. & Strang, P. (2011). Protection against perceptions of powerlessness and helplessness during palliative care: The family members' perspective. Palliative & Supportive Care, 9(3), 251–262.Google Scholar
Mockford, C., Jenkinson, C. & Fitzpatrick, R. (2006). A review: Carers, MND and service provision. Amyotrophic Lateral Sclerosis, 7(3), 132–141.CrossRefGoogle ScholarPubMed
Morina, N. (2011). Rumination and avoidance as predictors of prolonged grief, depression, and posttraumatic stress in female widowed survivors of war. Journal of Nervous and Mental Disease, 199(12), 921–927.Google Scholar
Mystakidou, K., Tsilika, E., Parpa, E., et al. (2006). Psychological distress of patients with advanced cancer: Influence and contribution of pain severity and pain interference. Cancer Nursing, 29(5), 400–405.Google Scholar
National Council for Palliative Care (2013). Who cares? Support for carers of people approaching the end of life. London: NCPC.Google Scholar
Neimeyer, R.A. (2006). From death anxiety to meaning making at the end of life: Recommendations for psychological assessment. Clinical Psychology–Science and Practice, 12(3), 354–357.Google Scholar
Neimeyer, R.A. & Dingemans, P. (1980). Death orientation in the suicide intervention worker. Omega: The Journal of Death and Dying, 11(1), 15–23.Google Scholar
Neimeyer, R.A., Moser, R.P. & Wittkowski, J. (2003). Assessing attitudes toward dying and death: Psychometric considerations. Omega: The Journal of Death and Dying, 47(1), 45–76.Google Scholar
Neimeyer, R.A., Wittkowski, J. & Moser, R.P. (2004). Psychological research on death attitudes: An overview and evaluation. Death Studies, 28(4), 309–340.CrossRefGoogle ScholarPubMed
Niemiec, C.P., Brown, K.W., Kashdan, T.B., et al. (2010). Being present in the face of existential threat: The role of trait mindfulness in reducing defensive responses to mortality salience. Journal of Personality and Social Psychology, 99(2), 344–365.Google Scholar
Office for National Statistics (2013). National bereavement survey (VOICES) 2012. Newport, South Wales: Office for National Statistics.Google Scholar
Payne, S. & Grande, G. (2013). Towards better support for family carers: A richer understanding. Palliative Medicine, 27(7), 579–580.CrossRefGoogle ScholarPubMed
Planalp, S. & Trost, M.R. (2008). Communication issues at the end of life: Reports from hospice volunteers. Health Communication, 23(3), 222–233.Google Scholar
Porter, L.S., Keefe, F.J., Hurwitz, H., et al. (2005). Disclosure between patients with gastrointestinal cancer and their spouses. Psycho-Oncology, 14(12), 1030–1042.Google Scholar
Prigerson, H.G. & Maciejewski, P.K. (2008). Grief and acceptance as opposite sides of the same coin: Setting a research agenda to study peaceful acceptance of loss. British Journal of Psychiatry, 193(6), 435–437.Google Scholar
Prigerson, H.G., Maciejewski, P.K., Reynolds, C.F., et al. (1995). Inventory of complicated grief: A scale to measure maladaptive symptoms of loss. Psychiatry Research, 59(1–2), 65–79.Google Scholar
Prigerson, H.G., Vanderwerker, L. & Maciejewski, P. (2008). A case for inclusion of prolonged grief disorder in DSM-V. In Handbook of bereavement research and practice: Advances in theory and intervention. Stroebe, M.S. et al. (eds.), pp. 165–186. Washington, DC: American Psychological Association.Google Scholar
Prigerson, H.G., Horowitz, M.J., Jacobs, S.C., et al. (2009). Prolonged grief disorder: Psychometric validation of criteria proposed for DSM–V and ICD–11. PLoS Medicine, 6(8).Google Scholar
Productivity Commission (2011). Disability care and support. Canberra: Productivity Commission.Google Scholar
Rando, T. (2000). Clinical dimensions of anticipatory mourning: Theory and practice in working with the dying, their loved ones, and their caregivers. Champaign, IL: Research Press.Google Scholar
Redfoot, D., Feinberg, L. & Houser, A. (2013). The aging of the baby boom and the growing care gap: A look at future declines in the availability of family caregivers. Insight on the Issues ‘85. Washington DC: AARP Public Policy InstituteGoogle Scholar
Rodriguez Villar, S., Sanchez Casado, M., Prigerson, H.G., et al. (2012). Prolonged grief disorder in the next of kin of adult patients who die during or after admission to intensive care. Chest, 141(6), 1635–1636.Google Scholar
Romanoff, B. (2012). Acceptance and commitment therapy (ACT). In Techniques of grief therapy. Neimeyer, R.A. (ed.), pp. 133–135. New York: Routledge.Google Scholar
Routledge, C. & Juhl, J. (2010). When death thoughts lead to death fears: Mortality salience increases death anxiety for individuals who lack meaning in life. Cognition & Emotion, 24(5), 848–854.Google Scholar
Ruiz, F. (2010). A review of acceptance and commitment therapy (ACT) empirical evidence: Correlational, experimental psychopathology, component and outcome studies. International Journal of Psychology and Psychological Therapy, 10, 125–162.Google Scholar
Schoka Traylor, E., Hayslip, B. Jr., Kaminski, P.L., et al. (2003). Relationships between grief and family system characteristics: A cross-lagged longitudinal analysis. Death Studies, 27(7), 575–601.Google Scholar
Schulz, R., Boerner, K., Shear, K., et al. (2006). Predictors of complicated grief among dementia caregivers: A prospective study of bereavement. American Journal of Geriatric Psychiatry, 14(8), 650–658.Google Scholar
Shear, M.K. (2010). Exploring the role of experiential avoidance from the perspective of attachment theory and the dual process model. Omega: The Journal of Death and Dying, 61(4), 357–369.Google Scholar
Sherman, D.W., Norman, R. & McSherry, C.B. (2010). A comparison of death anxiety and quality of life of patients with advanced cancer or AIDS and their family caregivers. The Journal of the Association of Nurses in AIDS Care, 21(2), 99–112.Google Scholar
Spira, A.P., Beaudreau, S.A., Jimenez, D., et al. (2007). Experiential avoidance, acceptance, and depression in dementia family caregivers. Clinical Gerontologist: The Journal of Aging and Mental Health, 30(4), 55–64.Google Scholar
Stroebe, M.S. & Schut, H. (1999). The dual process model of coping with bereavement: Rationale and description. Death Studies, 23(3), 197–224.Google Scholar
Stroebe, M.S., Folkman, S., Hansson, R.O., et al. (2006). The prediction of bereavement outcome: Development of an integrative risk factor framework. Social Science & Medicine, 63(9), 2440–2451.Google Scholar
Thompson, G.N., Chochinov, H.M., Wilson, K.G., et al. (2009). Prognostic acceptance and the well-being of patients receiving palliative care for cancer. Journal of Clinical Oncology, 27(34), 5757–5762.Google Scholar
Tomer, A. (2012). Meaning and death attitudes. In The human quest for meaning, 2nd ed.Wong, P.T.P. (ed.), pp. 209–231. New York: Routledge.Google Scholar
Tomer, A. & Eliason, G. (2005). Life regrets and death attitudes in college students. Omega: The Journal of Death and Dying, 51(3), 173–195.Google Scholar
van Hiel, A. & Vansteenkiste, M. (2009). Ambitions fulfilled? The effects of intrinsic and extrinsic goal attainment on older adults' ego-integrity and death attitudes. International Journal of Aging & Human Development, 68(1), 27–51.Google Scholar
Vehling, S., Lehmann, C., Oechsle, K., et al. (2011). Global meaning and meaning-related life attitudes: Exploring their role in predicting depression, anxiety, and demoralization in cancer patients. Supportive Care in Cancer, 19(4), 513–520.Google Scholar
Wallerstedt, B., Andershed, B. & Benzein, E. (2013). Family members' caregiving situations in palliative home care when sitting service is received: The understanding of multiple realities. Palliative & Supportive Care, 20, 1–13.Google Scholar
Wang, L.-C., Chen, W.-Y., Chang, S.-C., et al. (2011). Caregiving burden and associated factors among caregivers of terminally ill gastrointestinal cancer patients. Hu li za zhi. The Journal of Nursing, 58(6), 54–64.Google ScholarPubMed
Wicksell, R., Melin, L., Lekander, M., et al. (2009). Evaluating the effectiveness of exposure and acceptance strategies to improve functioning and quality of life in longstanding pediatric pain: A randomized controlled trial. Pain, 37, 1–14.Google Scholar
Williams, A.-L. & McCorkle, R. (2011). Cancer family caregivers during the palliative, hospice, and bereavement phases: A review of the descriptive psychosocial literature. Palliative & Supportive Care, 9(3), 315–325.Google Scholar
Wink, P. (2006). Who is afraid of death? Religiousness, spirituality, and death anxiety in late adulthood. Journal of Religion, Spirituality & Aging, 18(2–3), 93–110.Google Scholar
Wittouck, C., van Autreve, S., De Jaegere, E., et al. (2011). The prevention and treatment of complicated grief: A meta-analysis. Clinical Psychology Review, 31(1), 69–78.Google Scholar
Wong, P.T.P. (2008). Meaning management theory and death acceptance. In Existential and spiritual issues in death attitudes. Tomer, A. et al. (eds.), pp. 65–87. Mahwah, NJ: Erlbaum.Google Scholar
Wong, P.T.P., Reker, G.T. & Gesser, G. (1994). Death attitude profile-revised: A multidimensional measure of attitudes toward death. In Death anxiety handbook: Research, instrumentation, and application. Neimeyer, R.A. (ed.), pp. 121–145. Washington, DC: Taylor & Francis.Google Scholar
Wong, W. (2009). The growth of death awareness through death education among university students in Hong Kong. Omega: The Journal of Death and Dying, 59(2), 113–128.Google Scholar
Wu, A.M.S. (2008). Discussion of posthumous organ donation in Chinese families. Psychology, Health & Medicine, 13(1), 48–54.Google Scholar
Yalom, I. (2008). Staring at the sun: Overcoming the terror of death. San Francisco: Jossey-Bass.Google Scholar
Zhang, A.Y. & Siminoff, L.A. (2003). Silence and cancer: Why do families and patients fail to communicate? Health Communication, 15(4), 415–429.Google Scholar