Hostname: page-component-cd9895bd7-dk4vv Total loading time: 0 Render date: 2024-12-25T05:16:58.876Z Has data issue: false hasContentIssue false
  • English
  • Français

A conceptual model and key variables for guiding supportive interventions for family caregivers of people receiving palliative care

Published online by Cambridge University Press:  01 December 2003

PETER HUDSON
PETER HUDSON
Affiliation:
School of Nursing and Centre for Palliative Care, University of Melbourne, Carlton, Victoria 3053, Australia
Get access Rights & Permissions [Opens in a new window]

Abstract

According to the World Health Organization, the patient and family should be viewed as the “unit of care” when palliative care is required. Therefore family caregivers should receive optimal supportive care from health professionals. However, the impact of supporting a dying relative is frequently described as having negative physical and psychosocial sequalae. Furthermore, family caregivers consistently report unmet needs and there has been a dearth of rigorous supportive interventions published. In addition, comprehensive conceptual frameworks to navigate the family caregiver experience and guide intervention development are lacking. This article draws on Lazarus and Folkman's seminal work on the transactional stress and coping framework to present a conceptual model specific to family caregivers of patients receiving palliative care. A comprehensive account of key variables to aid understanding of the family caregiver experience and intervention design is provided.

Keywords

Palliative careCaregiversPsychosocial supportStressTheoretical model
Type
REVIEW ARTICLES
Information
Palliative & Supportive Care , Volume 1 , Issue 4 , December 2003 , pp. 353 - 365
Copyright
© 2003 Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Addington-Hall, J., MacDonald, L., Anderson, & H., et al. (1992). Randomised controlled trial of effects of coordinating care for terminally ill cancer patients. British Medical Journal, 305.Google Scholar
Andershed, B. & Ternestedt, B. (2001). Development of a theoretical framework describing relatives' involvement in palliative care. Journal of Advanced Nursing, 34, 554–562.Google Scholar
Aneshensel, C., Pearlin, L., Mullan, & J., et al. (1995). Profiles in Caregiving. San Diego, CA: Academic Press.
Aranda, K. & Hayman-White, K. (2001). Home caregivers of the person with advanced cancer: An Australian perspective. Cancer Nursing, 24, 300–307.Google Scholar
Archbold, P., Stewart, B., Greenlick, & M., et al. (1990). Mutuality and preparedness as predictors of role strain. Research in Nursing and Health, 13, 375–384.Google Scholar
Barg, F., Pasacreta, J., Nuamah, & I., et al. (1998). A description of a psychoeducational intervention for family caregivers of cancer patients. Journal of Family Nursing, 44, 394–413.Google Scholar
Baron, R. & Kenny, D. (1986). The moderator-mediator variable distinction in social psychological research: Conceptual, strategic and statistical considerations. Journal of Personality and Social Psychology, 51, 1173–1182.Google Scholar
Biegel, D. & Schulz, R. (1999). Caregiving and caregiver interventions in aging and mental illness. Family Relations, 48, 345–354.Google Scholar
Bloom, J. (2000). The role of family support in cancer control. In Cancer and the Family, 2nd ed., L. Baider, C. Cooper, & A. De-Nour (eds.), pp. 55–67. Chichester, UK: John Wiley and Sons.
Borneman, T. (1998). Caring for cancer patients at home: The effect on family caregivers. Home Health Care Management Practices, 10, 25–33.Google Scholar
Burns, N. & Grove, S. (2001). The Practice of Nursing Research: Conduct Critique and Utilization, 4th ed. Philadelphia: W.B Saunders.
Cameron, J., Franche, R., Cheung, & A., et al. (2002). Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer, 94, 521–527.Google Scholar
Cheng, W., Schuckers, P., Hauser, & G., et al. (1994). Psychosocial needs of family caregivers of terminally ill patients. Psychological Reports, 75, 1243–1250.Google Scholar
Clark, D. (1993). Evaluating the needs of informal caregivers. Progress in Palliative Care, 1, 3–5.Google Scholar
Cohen, F. & Lazarus, R. (1979). Coping with the stress of illness. In Health Psychology, G. Stone, F. Cohen, & N. Adler (eds.), pp. 247–254. San Francisco, CA: Jossey-Bass.
Decker, S. & Young, E. (1991). Self-perceived needs of primary caregivers of home-hospice clients. Journal of Community Health Nursing, 8, 147–154.Google Scholar
Derdiarian, A. (1989). Effects of information on recently diagnosed cancer patients' and spouses' satisfaction with care. Cancer Nursing, 12, 285–292.Google Scholar
Ferrell, B. (1998). The family. In Oxford Textbook of Palliative Medicine, 2nd ed., D. Doyle, G. Hanks, & N. MacDonald (eds.), pp. 909–917. Oxford: Oxford University Press.
Folkman, S. (1997). Positive psychological states and coping with severe stress. Social Science Medicine, 45, 1207–1221.Google Scholar
Folkman, S., Lazarus, R., Gruen, & R., et al. (1986). Appraisal, coping, health status, and psychological symptoms. Journal of Personality and Social Psychology, 50, 571–579.Google Scholar
Gaugler, J., Kane, R., & Langlois, J. (2000). Assessment of family caregivers of older adults. In Assessing Older Persons: Measures, Meaning and Practical Applications, R. Kane & R. Kane (eds.), pp. 321–359. New York: Oxford University Press.
Given, C., Given, B., Stommel, & M., et al. (1999). The impact of new demands for assistance on caregiver depression: Tests using an inception cohort. The Gerontologist, 39, 76–85.Google Scholar
Given, C., Given, B., Stommel, & M., et al. (1992). The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Research in Nursing and Health, 15, 271–283.Google Scholar
Given, C., Stommel, M., Given, & B., et al. (1993). The influence of cancer patients' symptoms and functional states on patients' depression and family caregivers' reaction and depression. Health Psychology, 12, 277–285.Google Scholar
Glasdam, S., Bonde Jensen, A., Lindegaard Madsen, & E., et al. (1996). Anxiety and depression in cancer patients' spouses. Psycho-Oncology, 5, 23–29.Google Scholar
Grant, G., Ramcharan, P., McGrath, & M., et al. (1998). Rewards and gratifications among family caregivers: Towards a refined model of caring and coping. Journal of Intellectual Disability Research, 42, 58–71.Google Scholar
Grbich, C., Parker, D., & Maddocks, I. (2000). Communication and information needs of care-givers of adult family members at diagnosis and during treatment of terminal cancer. Progress in Palliative Care, 8, 345–350.Google Scholar
Haley, W., LaMonde, L., Han, & B., et al. (2001). Family caregiving in hospice: Effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. The Hospice Journal, 15, 1–18.Google Scholar
Harding, R. & Higginson, I. (2003). What is the best way to help caregivers in cancer and palliative care? A systematic review of interventions and their effectiveness. Palliative Medicine, 17, 63–74.Google Scholar
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.Google Scholar
Hodgson, C., Higginson, I., McDonnell, & M., et al. (1997). Family anxiety in advanced cancer: A multicentre prospective study in Ireland. British Journal of Cancer, 76, 1211–1214.Google Scholar
Hudson, P. (1998). The educational needs of lay carers. European Journal of Palliative Care, 5, 183–186.Google Scholar
Hudson, P. (In press). A critical review of supportive interventions for family caregivers of palliative stage cancer patients. Journal of Psychosocial Oncology.
Kelly, B., Edwards, P., Synott, & R., et al. (1999). Predictors of bereavement outcome for family carers of cancer patients. Psycho-Oncology, 8, 237–249.Google Scholar
Kinsella, G., Cooper, B., Picton, & C., et al. (1998). A review of the measurement of caregiver and family burden in palliative care. Journal of Palliative Care, 14, 37–45.Google Scholar
Kinsella, G., Cooper, B., Picton, & C., et al. (2000). Factors influencing outcomes for family caregivers of persons receiving palliative care: Toward an integrated model. Journal of Palliative Care, 16, 46–54.Google Scholar
Kissane, D. (2000). A model of family-centred intervention during palliative care and bereavement: Focused family grief therapy. In Cancer and the Family, L. Baider, C. Cooper, & A. De-Nour (eds.), pp. 175–192. Chichester, UK: John Wiley and Sons.
Kramer, B. (1997). Gain in the caregiving experience: Where are we? What next? The Gerontologist, 37, 218–232.Google Scholar
Kristjanson, L., Hudson, P., & Oldham, L. (2003). Working with families in palliative care. In Palliative Care Nursing: A Guide to Practice, 2nd ed., M. O'Connor & S. Aranda (eds.), pp. 271–283. Melbourne: Ausmed.
Kurtz, M., Kurtz, J., Given, & C., et al. (1995). Relationship of caregiver reactions and depression to cancer patients' symptoms, functional states, and depression—A longitudinal view. Social Science Medicine, 40, 837–846.Google Scholar
Lawton, P., Kleban, M., Moss, & M., et al. (1989). Measuring caregiver appraisal. Journal of Gerontology: Psychological Sciences, 44, 61–71.Google Scholar
Lawton, P., Moss, M., Kleban, & M., et al. (1991). A two-factor model of caregiving appraisal and psychological well-being. Journal of Gerontology, 46, 181–189.Google Scholar
Lazarus, R. (1993). Coping theory and research: Past, present, and future. Psychosomatic Medicine, 55, 234–247.Google Scholar
Lazarus, R. & Folkman, S. (1984). Stress, Appraisal, and Coping. New York: Springer Publishing Co.
Lilja, Y., Ryden, S., & Fridlund, B. (1998). Effects of extended preoperative information on perioperative stress: An anaesthetic nurse intervention for patients with breast cancer and total hip replacement. Intensive and Critical Care Nursing, 14, 276–282.Google Scholar
Lovett, S. & Gallagher, D. (1988). Psychoeducational interventions for family caregivers: Preliminary efficacy data. Behaviour Therapy, 19, 321–330.Google Scholar
McCorkle, R. & Pasacreta, V. (2001). Enhancing caregiver outcomes in palliative care. Cancer Control, 8, 36–45.Google Scholar
Miaskowski, C., Kragness, L., Dibble, & S., et al. (1997). Difference in mood states, health status, and caregiver strain between family caregivers of oncology outpatients with and without cancer-related pain. Journal of Pain and Symptom Management, 13, 138–147.Google Scholar
Miller, B., Campbell, R., Farran, & C., et al. (1995). Race, control, mastery and caregiver distress. Journal of Gerontology: Social Sciences, 50B, S374–S382.Google Scholar
Nijboer, C., Tempelaar, R., Sanderman, & R., et al. (1998). Cancer and caregiving: The impact on the caregiver's health. Psycho-Oncology, 1, 3–13.Google Scholar
Nolan, M. (2001). Positive aspects of caring. In Chronic and Terminal Illness: New Perspectives on Caring and Carers, S. Payne & C. Ellis-Hill (eds.), pp. 22–44. Oxford: Oxford University Press.
Nolan, M., Grant, G., & Keady, J. (1996). Understanding Family Care. Buckingham, UK: Open University Press.
Nolan, M., Keady, J., & Grant, G. (1995). Developing a typology of family care: Implications for nurses and other service providers. Journal of Advanced Nursing, 21, 256–265.Google Scholar
Oberst, M., Thomas, S., Gass, & K., et al. (1989). Caregiving demands and appraisal of stress among family caregivers. Cancer Nursing, 12, 209–215.Google Scholar
Pasacreta, V. & McCorkle, R. (2000). Cancer care: Impact of interventions on caregiver outcomes. In Annual Review of Nursing Research, Vol. 18, J. Goeppinger (ed.), pp. 127–148. New York: Springer Publishing Company.
Payne, S., Smith, P., & Dean, S. (1999). Identifying the concerns of informal carers in palliative care. Palliative Medicine, 13, 37–44.Google Scholar
Pot, A., Deeg, D., & van Dyck, R. (2000). Psychological distress of caregivers: Moderator effects of caregiver resources? Patient Education and Counselling, 41, 235–240.Google Scholar
Pot, A., Deeg, D., van Dyck, & R., et al. (1998). Psychological distress of caregivers: The mediator effect of caregiver appraisal. Patient Education and Counselling, 34, 43–51.Google Scholar
Ramirez, A., Addington-Hall, J., & Richards, M. (1998). The carers. In ABC of Palliative Care, M. Fallon & B. O'Neill (eds.), pp. 208–211. London: BMJ Books.
Sales, E., Schulz, R., & Biegel, D. (1992). Predictors of strain in families of cancer patients: A review of the literature. Journal of Psychosocial Oncology, 10, 1–26.Google Scholar
Saranson, I., Levine, H., Basham, & R., et al. (1983). Assessing social support: The social support questionnaire. Journal of Personality and Social Psychology, 44, 127–139.Google Scholar
Scheir, M. & Carver, C. (1985). Optimism, coping, and health: Assessment implications of generalized outcome expectancies. Health Psychology, 4, 219–247.Google Scholar
Schmall, V. (1995). Family caregiver education and training: Enhancing self efficacy. Journal of Case Management, 4, 156–162.Google Scholar
Schumacher, K., Dod, M., & Paul, S. (1993). The stress process in family caregivers of persons receiving chemotherapy. Research in Nursing & Health, 16, 395–404.Google Scholar
Schumaker, K., Stewart, B., & Archbold, P. (1998). Conceptualisation and measurement of doing family caregiving well. Image Journal of Nursing Scholarship, 30, 63–69.Google Scholar
Scott, G. (2001). A study of family carers of people with a life-threatening illness 2: The implications of the needs assessment. International Journal of Palliative Nursing, 7, 323–330.Google Scholar
Shaw, C. (1999). A framework for the study of coping, illness behaviour and outcomes. Journal of Advanced Nursing, 29, 1246–1255.Google Scholar
Small, N. & Rhodes, P. (2000). Too Ill to Talk: User Involvement in Palliative Care. London: Routledge.
Stajduhar, K. & Davies, B. (1998). Death at home: Challenges for families and directions for the future. Journal of Palliative Care, 14, 8–14.Google Scholar
Steele, R. & Fitch, M. (1996). Coping strategies of family caregivers of home hospice patients with cancer. Oncology Nursing Forum, 23, 955–960.Google Scholar
Toseland, R. & McCallion, P. (1997). Trends in caregiving intervention research. Social Work Research, 21, 154–164.Google Scholar
Tringali, C. (1986). The needs of family members of cancer patients. Oncology Nursing Forum, 13, 65–70.Google Scholar
Winslow, B. (1997). Effects of formal supports on stress outcomes in family caregivers of Alzheimer's patients. Research in Nursing & Health, 20, 27–37.Google Scholar
World Health Organization. (2002). WHO Definition of Palliative Care. Geneva.
Yancey, D., Greger, H., & Coburn, P. (1990). Determinants of grief resolution in cancer death. Journal of Palliative Care, 6, 24–31.Google Scholar
Yates, M., Tennstedt, S., & Chang, B.-H. (1999). Contributors to and mediators of psychological well-being for informal caregivers. The Journals of Gerontology, 54B, 12–22.Google Scholar
Yates, P. (1999). Family coping: Issues and challenges for cancer nursing. Cancer Nursing, 22, 63–70.Google Scholar
Yates, P. & Stetz, K. (1999). Families' awareness of and response to dying. Oncology Nursing Forum, 26, 113–120.Google Scholar
Younger, J. (1993). Development and testing of the mastery of stress instrument. Nursing Research, 42, 68–73.Google Scholar
Younger, J., Marsh, K., & Grap, M.J. (1995). The relationship of health locus of control and cardiac rehabilitation to mastery of illness-related stress. Journal of Advanced Nursing, 22, 294–299.Google Scholar
Zeiss, A., Gallagher-Thompson, D., Lovett, & S., et al. (1999). Self-efficacy as a mediator of caregiver coping: Development and testing of an assessment model. Journal of Clinical Geropsychology, 5, 221–230.Google Scholar