Purpose/Objectives: To examine how family members of patients with a primary malignant brain tumor transition into the caregiver role and how their perceptions of this transition change over time.
Research Approach: Descriptive, qualitative.
Setting: Neurosurgery and neuro-oncology clinics of a regional medical center.
Participants: 10 family caregivers of patients with a primary malignant brain tumor.
Methodologic Approach: A series of 11 open-ended questions addressing various aspects of the care situation were administered to each caregiver. The same questions were asked at baseline (within one month of the patient's diagnosis) and four months later. Content analysis was performed to identify themes among interviews.
Main Research Variables: Patient changes, caregiver adjustments, and accessing support.
Findings: Caregivers described difficulties stemming from the patient's tumor-related dysfunction and changes in their familial, occupational, and social roles. Support from family and friends was vital to caregivers' emotional health, but shock and fear were evident in all interviews. Becoming subsumed in the care situation was described as enmeshment. Caregivers reported difficulty in communicating with healthcare providers. When looking at change over time, three major themes emerged: Patient Changes: The New Normal; Caregiver Adjustments; and Accessing Support.
Conclusions: Caregivers require support in handling neurologic and physical sequelae, transitioning into new roles, and avoiding becoming enmeshed in the care situation.
Interpretation: This study underlines the importance of continuing research in this area to provide the necessary interventions that will assist caregivers and provide support throughout their loved one's disease trajectory.
Brummett, B. H., Babyak, M. A., Siegler, I. C., Vitaliano, P. P., Ballard, E. L., Gwyther, L. P., & Williams, R. B. (2006). Associations among perceptions of social support, negative affect, and quality of sleep in caregivers and noncaregivers. Health Psychology, 25, 220-225. doi: 10.1037/0278-622.214.171.124
Carter, P. A. (2006). A brief behavioral sleep intervention for family caregivers of persons with cancer. Cancer Nursing, 29(2), 95-103.
Chandana, S. R., Movva, S., Arora, M., & Singh, T. (2008). Primary brain tumors in adults. American Academy of Family Physicians, 77, 1423-1430.
Creswell, J. W. (1994). Research design: Qualitative and quantitative approaches. Thousand Oaks, CA: Sage.
Fox, S. W., Mitchell, S. A., & Booth-Jones, M. (2006). Cognitive impairment in patients with brain tumors: Assessment and intervention in the clinic setting. Clinical Journal of Oncology Nursing, 10, 169-176. doi: 10.1188/06.CJON.169-176
Happ, M. B., DeVito-Dabbs, A., Tate, J., Hricik, A., & Erlen, J. (2006). Exemplars of mixed methods data combination and analysis. Nursing Research, 55(2, Suppl.), S43-S49. doi: 10.1097/00006199-200603001-00008
Ishihara, H., Kubota, H., Lindberg, R. L., Leppert, D., Gloor, S. M., Errede, M., … Frei, K. (2008). Endothelial cell barrier impairment induced by glioblastomas and transforming grown factor β2 involves matrix metalloproteinases and tight junction proteins. Journal of Neuropathology and Experimental Neurology, 67, 435-448. doi: 10.1097/NEN.0b013e31816fd622
Janda, M., Eakin, E. G., Bailey, L., Walker, D., & Troy, K. (2006). Supportive care needs of people with brain tumours and their carers. Supportive Care in Cancer, 14, 1094-1103. doi: 10.1007/s00520-006-0074-1
Patton, M. Q. (2002). Qualitative research and evaluation methods (3rd ed.). Thousand Oaks, CA: Sage.
Reblin, M. & Uchino, B. N. (2008). Social and emotional support and its implication for health. Current Opinion in Psychiatry, 21, 201-205. doi: 10.1097/YCO.0b013e3282f3ad89
Schmer, C., Ward-Smith, P., Latham, S., & Salacz, M. (2008). When a family member has a malignant brain tumor: The caregiver perspective. Journal of Neuroscience Nursing, 40(2), 78-84. doi: 10.1097/01376517-200804000-00006
Schumacher, K. L., Beidler, S. M., Beeber, A. S., & Gambino, P. (2006). A transactional model of cancer family caregiving skill. Advances in Nursing Science, 29, 271-286.
Schumacher, K. L., Stewart, B. J., Archbold, P. G., Caparro, M., Mutale, F., & Agrawal, S. (2008). Effects of caregiving demand, mutuality, and preparedness on family caregiver outcomes during cancer treatment. Oncology Nursing Forum, 35, 49-56. doi: 10.1188/08.ONF.49-56
Sherwood, P. R., Given, B. A., Donovan, H., Baum, A., Given, C. W., Bender, C. M., & Schulz, R. (2008). Guiding research in family care: A new approach to oncology caregiving. Psycho-Oncology, 17, 986-996.
Sherwood, P. R., Given, B. A., Given, C. W., Schiffman, R. F., Murman, D. L., Lovely, M., … Remer, S. (2006). Predictors of distress in caregivers of persons with a primary malignant brain tumor. Research in Nursing and Health, 29, 105-120. doi: 10.1002/nur.20116
Stajduhar, K., Martin, W. L., Barwich, D., & Fyles, G. (2008). Factors influencing family caregivers' ability to cope with providing end-of-life cancer care at home. Cancer Nursing, 31, 77-85.
Tait, M. J., Petrik, V., Loosemore, A., Bell, B. A., & Papadopoulos, M. C. (2007). Survival of patients with glioblastoma multiforme has not improved between 1993 and 2004: Analysis of 625 cases. British Journal of Neurosurgery, 21, 496-500. doi: 10.1080/02688690701449251
Ziegler, D. S., Wright, R. D., Kesari, S., Lemieux, M. E., Tran, M. A., Jain, M., … Kung, A. L. (2008). Resistance of human glioblastoma multiforme cells to growth factor inhibitors is overcome by blockade of inhibitor apoptosis proteins. Journal of Clinical Investigation, 118, 3109-3122. doi: 10.1172/JCI34120