Purpose/Objectives: To explore the experience of informal caregivers of patients with a primary brain tumor by identifying themes of the caregiving experience specific to this population.
Research Approach: Qualitative study employing Parse's descriptive exploratory method.
Setting: National Cancer Institute-designated comprehensive cancer center in a major city in the southern United States.
Participants: 20 patients with primary brain tumors and their caregivers.
Methodologic Approach: Data collection involved a tape-recorded dialogue with caregivers using Story Theory. Patient and caregiver demographic information was collected.
Main Research Variables: Concepts of commitment, expectation management, role negotiation, self-care, new insight, and role support.
Findings: Caregivers of patients with primary brain tumors used the energy sources identified by the Model of Informal Caregiving Dynamics. Commitment is sustained through enduring patient cognitive and behavioral decline. Expectations are based on a realistic understanding of the disease trajectory and known mortality, and allow caregivers to hope for the ability to manage declining patients. Caregivers express difficulty in gauging the behavior of cognitively impaired patients. Healthcare providers support caregivers by supplying information and listening to caregivers' stories. In contrast to a similar study involving caregivers of bone marrow transplantation recipients, these caregivers reported negative perceptions.
Conclusions: Commitment, expectation management, role negotiation, self-care, new insight, and role support motivate informal caregivers of patients with primary brain tumors in a unique way.
Interpretation: Healthcare providers can support the caregiving experience by validating efforts, providing information, and listening to frustrations. Additional research should explore interventions aimed at assisting caregivers.
Albinsson, L., & Strang, P. (2003). Differences in supporting families of dementia patients and cancer patients: A palliative perspective. <i>Palliative Medicine, 17</i>, 359-367. http://dx.doi.org/10.1191/0269216303pm669oa
Andrews, S. C. (2001). Caregiver burden and symptom distress in people with cancer receiving hospice care. <i>Oncology Nursing Forum, 28</i>, 1469-1474.
Ayres, L. (2000a). Narratives of family caregiving: Four story types. <i>Research in Nursing and Health, 23</i>, 359-371. http://dx.doi.org/10.1002/1098-240X(200010)23:5<359::AID-NUR3>3.0.CO;2-J
Ayres, L. (2000b). Narratives of family caregiving: The process of making meaning. <i>Research in Nursing and Health, 23</i>, 424-434. http://dx.doi.org/10.1002/1098-240X(200012)23:6<424::AID-NUR2>3.0.CO;2-W
Bakas, T., Lewis, R. R., & Parsons, J. E. (2001). Caregiving tasks among family caregivers of patients with lung cancer. <i>Oncology Nursing Forum, 28</i>, 847-854.
Baumgarten, M., Battista, R. N., Infante-Rivard, C., Hanley, J. A., Becker, R., & Gauthier, S. (1992). The psychological and physical health of family members caring for an elderly person with dementia. <i>Journal of Clinical Epidemiology, 45</i>, 61-70. http://dx.doi.org/10.1016/0895-4356(92)90189-T
Biegel, D. E., Sales, E., & Schulz, R. (1991). <i>Family caregiving in chronic illness: Alzheimer's disease, cancer, heart disease, mental illness, and stroke</i>. Newbury Park, CA: Sage Publications.
Carey, P. J., Oberst, M. T., McCubbin, M. A., & Hughes, S. H. (1991). Appraisal and caregiving burden in family members caring for patients receiving chemotherapy. <i>Oncology Nursing Forum, 18</i>, 1341-1348.
Chenoweth, B., & Spencer, B. (1986). Dementia: The experience of family caregivers. <i>Gerontologist, 26</i>, 267-272. http://dx.doi.org/10.1093/geront/26.3.267
Clipp, E. C., & George, L. K. (1993). Dementia and cancer: A comparison of spouse caregivers. <i>Gerontologist, 33</i>, 534-541.
Collins, C., & Jones, R. (1997). Emotional distress and morbidity in dementia carers: A matched comparison of husbands and wives. <i>International Journal of Geriatric Psychiatry, 12</i>, 1168-1173.
Connell, C. M., Janevic, M. R., & Gallant, M. P. (2001). The costs of caring: Impact of dementia on family caregivers. <i>Journal of Geriatric Psychiatry and Neurology, 14</i>(4), 179-187. http://dx.doi.org/10.1177/089198870101400403
De la Cuesta, C. (2005). The craft of care: Family care of relatives with advanced dementia. <i>Qualitative Health Research, 15</i>, 881-896. http://dx.doi.org/10.1177/1049732305277805
Farran, C. J., Keane-Hagarty, E., Salloway, S., Kupferer, S., & Wilken, C. S. (1991). Finding meaning: An alternative paradigm for Alzheimer's disease family caregivers. <i>Gerontologist, 31</i>, 483-489.
Flaskerund, J. H., Carter, P. A., & Lee, P. (2000). Distressing emotions in female caregivers of people with AIDS, age-related dementias, and advanced-stage cancers. <i>Perspectives in Psychiatric Care, 36</i>(4), 121-130.
Given, B., Wyatt, G., Given, C., Sherwood, P., Gift, A., DeVoss, D., & Rahbar, M. (2004). Burden and depression among caregivers of patients with cancer at the end of life. <i>Oncology Nursing Forum, 31</i>, 1105-1115. http://dx.doi.org/10.1188/04.ONF.1105-1117
Haley, W. E., LaMonde, L. A., Han, B., Narramore, S., & Schonwetter, R. (2001). Family caregiving in hospice: Effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. <i>Hospice Journal, 15</i>(4), 1-18.
Holtslander, L., Duggleby, W., Williams, A. M., & Wright, K. E. (2005). The experience of hope for informal caregivers of palliative patients. <i>Journal of Palliative Care, 21</i>, 285-291.
Janda, M., Eakin, E. G., Bailey, L., Walker, D., & Troy, K. (2006). Supportive care needs of people with brain tumours and their carers. <i>Supportive Care in Cancer, 14</i>, 1094-1103.
Lawton, M. P., Rajagopal, D., Brody, E., & Kleban, M. H. (1992). The dynamics of caregiving for a demented elder among Black and White families. <i>Journal of Gerontology, 47</i>(4, Suppl.), S156-S164.
Lee, S., Colditz, G. A., Berkman, L. F., & Kawachi, I. (2003). Caregiving and risk of coronary heart disease in U. S. women. <i>American Journal of Preventative Medicine, 24</i>, 113-119.
Liehr, P., & Smith, M. J. (2000, Summer). Using story theory to guide nursing practice. <i>International Journal for Human Caring</i>, 13-18.
LoboPrabhu, S., Molinari, V., Arlinghaus, K., Barr, E., & Lomax, J. (2005). Spouses of patients with dementia: How do they stay together "till death do us part"? <i>Journal of Gerontological Social Work, 44</i>(3-4), 161-174. http://dx.doi.org/10.1300/J083v44n03_10
Parse, R. R. (2001). <i>Qualitative inquiry: The path of sciencing.</i> Sudbury, MA: Jones and Bartlett.
Parse, R. R., Coyne, A. B., & Smith, M. J. (1985). <i>The descriptive method. In Nursing research: Qualitative methods</i>(pp. 91-94). Bowie, MD: Brady Communications.
Picot, S. J., Debanne, S. M., Namazi, K. H., & Wykel, M. L. (1997). Religiosity and perceived rewards of black and white caregivers. <i>Gerontologist, 37</i>, 89-101.
Pinquart, M., & Sorensen, S. (2003). Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: A meta-analysis. <i>Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 58</i>, 112-128.
Pinquart, M., & Sorensen, S. (2005). Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: A meta-analysis. <i>Gerontologist, 45</i>, 90-106.
Schumacher, K. L. (1996). Reconceptualizing family caregiving: Family-based illness care during chemotherapy. <i>Research in Nursing and Health, 19</i>, 261-271.
Sherwood, P., Given, B., Given, C., Schiffman, R., Murman, D., & Lovely, M. (2004). Caregivers of persons with a brain tumor: A conceptual model. <i>Nursing Inquiry, 11</i>, 43-53.
Sherwood, P., Given, C., Given, B., & Von Eye, A. (2005). Caregiver burden and depressive symptoms: Analysis of common outcomes in caregivers of elderly patients. <i>Journal of Aging and Health, 7</i>, 125-147.
Sherwood, P. R., Given, B. A., Doorenbos, A. Z., & Given, C. W. (2004). Forgotten voices: Lessons from bereaved caregivers of persons with a brain tumor. <i>International Journal of Palliative Nursing, 10</i>(2), 67-75.
Shyu, Y. L. (2000). Role tuning between caregiver and care receiver during discharge transition: An illustration of role function mode in Roy's Adaptation Theory. <i>Nursing Science Quarterly, 13</i>, 323-331. http://dx.doi.org/10.1177/08943180022107870
Smith, M. J., & Liehr, P. R. (Eds.). (2003). <i>Middle range theory for nursing.</i> New York, NY: Springer.
Upton, N., & Reed, V. (2006). The influence of social support on caregiver coping. <i>International Journal of Psychiatric Nursing Research, 11</i>, 1256-1267.
Williams, L. (2008). The theory of caregiving dynamics. In M. J. Smith & P. R. Liehr (Eds.), <i>Middle range theory for nursing</i>(2nd ed., pp. 261-276). New York, NY: Springer.
Williams, L. A. (2005). <i>The meaning of informal BMT caregiving</i>(unpublished doctoral dissertation). University of Texas Health Science Center at Houston.
Williams, L. A. (2007). Whatever it takes: Informal caregiving dynamics in blood and marrow transplantation. <i>Oncology Nursing Forum, 34</i>, 379-387. http://dx.doi.org/10.1188/07.ONF.379-387
Wuest, J., Ericson, P. K., & Stern, P. N. (1994). Becoming strangers: The changing family caregiving relationship in Alzheimer's disease. <i>Journal of Advanced Nursing, 20</i>, 437-443.
Wuest, J., Ericson, P. K., Stern, P. N., & Irwin, G. W., Jr. (2001). Connected and disconnected support: The impact on the caregiving process in Alzheimer's disease. <i>Healthcare for Women International, 22</i>, 115-130.
Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. <i>Gerontologist, 20</i>, 649-655.