Caregiver Role Stress: When Families Become Providers
Abstract
Background
In view of the large number of families engaged in caregiving, this study was initiated to describe informal cancer care provision from the perspective of the caregiver.
Methods
A professional data collection site was used to convene focus groups in four cities. Participants included 63 caregivers, 87% of whom were female, mean age of 56 years. Caregivers responded to an open-ended question regarding the challenges of providing care. The study utilized qualitative analysis of verbatim transcripts. Transcript coding with four independent raters, using an iterative process, achieved a high inter-rater reliability.
Results
The project elucidates self-reported concerns confronted in cancer caregiving. Five primary themes emerged: supportive care demands, emotional toll, impact on health status, coping strategies, and rewards and affirmation. Providing supportive care introduced a balancing act in caregivers’ lives as they attempted to address complex and overlapping roles. They felt alone in their decisions, were under-prepared for tasks they assumed, and tried to shield the care recipient.
Conclusions
This qualitative approach confirmed past research while identifying novel concepts related to maintaining well-being and a sense of purpose despite caregiving hardships. Some aspects of caregiver suffering were identified. Caregiver self-regulation strategies revealed by this work suggest ideas for psychosocial interventions caregivers could use to protect themselves and the care recipient from impending distress.
References
1. Feinberg L.F. Family Caregiving and Public Policy: Principles for Change. National Center on Caregiving/Family Caregiver Alliance. San Francisco, Calif; 2003. Available at http://www.caregiving.org/data/principles04.pdf.
2. Caregiving in the United States. National Alliance for Caregiving & American Association of Retired Persons (NAC/AARP). Washington DC; 2004. Available at http://www.caregiving.org/data/04finalreport.pdf.
3. Coristine M., Crooks D., Grunfeld E.et al. Caregiving for women with advanced breast cancer. Psychooncology. 2003; 12: 709–719.
4. Richardson A., Lee L., Birchall M. Learning from patients with cancer and their spouses: a focus group study. J Laryngol Otol. 2002; 116: 12: 1028–1035.
5. Parrish M.M., Adams S. An exploratory qualitative analysis of the emotional impact of breast cancer and caregiving among older women. Care Manag J. 2003; 4: 191–197.
6. Schulman-Green D., McCorkle R., Curry L.et al. At the crossroads: making the transition to hospice. Palliat Support Care. 2004; 2: 351–360.
7. Clayton J.M., Butow P.N., Tattersall M.H. The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end-of-life issues. Cancer. 2005; 103: 1957–1964.
8. Raveis V.H., Pretter S. Existential plight of adult daughters following their mother's breast cancer diagnosis. Psychooncology. 2005; 14: 49–60.
9. Kruger R. Focus Groups: A Practical Guide for Applied Research. Sage Publications: London; 1988.
10. Pope C., Ziebland S., Mays N. Qualitative research in healthcare: analyzing qualitative data. BMJ. 2000; 320: 114–116.
11. Miles M.B., Huberman A.M. Qualitative Data Analysis: An Expanded Sourcebook. 2nd ed. Sage Publications: Thousand Oaks, Calif; 1994.
12. Strauss A., Corbin J. Basics of Qualitative Research: Grounded theory Procedures and Techniques. Sage Publications: Newbury Park, Calif; 1990.
13. Carter P.A. Caregivers’ descriptions of sleep changes and depressive symptoms. Oncol Nurs Forum. 2002; 9: 1277–1283.
14. Caregiver Health as a Public Health Issue. Conference Proceedings. The Urban Institute: Washington, DC; September 26, 2006.
15. Sales E. Family burden and quality of life. Qual Life Res. 2003; 12(Suppl 1): 33–41.
16. Beach S.R., Schulz R., Yee J.L.et al. Negative and positive health effects of caring for a disabled spouse: longitudinal findings from the Care-giver Health Effects Study. Psychol Aging. 2000; 15: 259–271.
17. Beach S.R., Schultz R., Williamson G.M.et al. Risk factors for potentially harmful informal caregiver behavior. J Am Geriatr Soc. 2005; 53: 255–261.
18. Grunfeld E., Coyle D., Whelan T.et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 2004; 170: 1795–1801.
19. Schulz R., Beach S.R. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA. 1999; 282: 2215–2219.
20. Goldstein N.E., Concato J., Fried T.R.et al. Factors associated with caregiver burden among caregivers of terminally ill patients with cancer. J Palliat Care. 2004; 20: 8–43.
21. Morimoto T., Schreiner A.S., Asano H. Caregiver burden and health-related quality of life among Japanese stroke caregivers. Age Aging. 2003; 32: 218–223.
22. Nijboer C., Tempelaar R., Sanderman R. Cancer and caregiving: the impact on the caregiver's health. Psychooncology 1998; 7: 3–13.
23. Nijboer C., Tempelaar R., Triemstar M.et al. The role of social and psychological resources in caregiving of cancer patients. Cancer. 2001; 91: 1029–1039.
24. Seltzer M.M., Li L.W. The dynamics of caregiving: transitions during a three-year prospective study. Gerontologist. 2000; 40: 165–178.
25. Cassell E.J. Diagnosing suffering: a perspective. Ann Intern Med. 1999; 131: 531–534.
Cite article
Cite article
Cite article
OR
Download to reference manager
If you have citation software installed, you can download article citation data to the citation manager of your choice
Information, rights and permissions
Information
Published In
Article first published: April 2007
Issue published: April 2007
PubMed: 17387304
Authors
Metrics and citations
Metrics
Article usage*
Total views and downloads: 984
*Article usage tracking started in December 2016
Altmetric
See the impact this article is making through the number of times it’s been read, and the Altmetric Score.
Learn more about the Altmetric Scores
Articles citing this one
Receive email alerts when this article is cited
Web of Science: 0
Crossref: 63
- Bibliometric analysis of global research on psychological well-being, subjective burden, and psychosocial support of family caregivers of cancer patients
- Emotional labour in comforting strangers on social media
- Digital Health Equity and Tailored Health Care Service for People With Disability: User-Centered Design and Usability Study
- Self-Control as a Mediator between Caregiver Burden and Quality of Life in Cancer Patient Primary Caregivers
- Predictors of caregiver burden among primary caregivers of cancer patients at Hawassa oncology center Northern, Ethiopia, 2022: institution-based cross-sectional study
- A qualitative exploration of the dynamics of guilt experience in family cancer caregivers
- The Moral Dimensions of Family Caregiving for Patients with Advanced Cancer: A Qualitative Study
- Participation in inpatient care from the perspective of family members of palliative care patients
- Digital Health Equity and Tailored Health Care Service for People With Disability: User-Centered Design and Usability Study (Preprint)
- The Relationship Between Caregiver Burden and Posttraumatic Growth in Caregivers of Patients With Metastatic Cancer
- View More
Figures and tables
Figures & Media
Tables
View Options
View options
PDF/EPUB
View PDF/EPUBAccess options
If you have access to journal content via a personal subscription, university, library, employer or society, select from the options below:
I am signed in as:
View my profileSign out
I can access personal subscriptions, purchases, paired institutional access and free tools such as favourite journals, email alerts and saved searches.
loading institutional access options
Alternatively, view purchase options below:
Purchase 24 hour online access to view and download content.
Access journal content via a DeepDyve subscription or find out more about this option.
