Article
Family Caregiver Burden, Skills Preparedness, and Quality of Life in Non-Small Cell Lung Cancer
Purpose/Objectives: To describe burden, skills preparedness, and quality of life (QOL) for caregivers of patients with non-small cell lung cancer (NSCLC), and describe how the findings informed the development of a caregiver palliative care intervention that aims to reduce caregiver burden, improve caregiving skills, and promote self-care.
Design: Descriptive, longitudinal.
Setting: A National Cancer Institute-designated comprehensive cancer center in southern California.
Sample: 163 family members or friends aged 18 years or older and identified by patients as being a caregiver.
Methods: All eligible caregivers were approached by advanced practice nurses during a regularly scheduled patient clinic visit. Informed consent was obtained prior to study participation. Outcome measures were completed at baseline and repeated at 7, 12, 18, and 24 weeks. Descriptive statistics were computed for all variables, and one-way repeated-measures analysis of variance was used to test for change over time for all predictor and outcome variables.
Main Research Variables: Caregiver burden, skills preparedness, psychological distress, and QOL.
Findings: Caregivers were highly functional. Caregiver burden related to subjective demands increased significantly over time. Perceived skills preparedness was high at baseline but decreased over time. Psychological distress was moderate but increased in the study period. Overall QOL was moderate at baseline and decreased significantly over time. Psychological well-being had the worst QOL score.
Conclusions: Caregivers experienced high levels of caregiver burden and reported deteriorations in psychological well-being and overall QOL.
Implications for Nursing: Oncology nurses need to ensure that caregivers receive information that supports the caregiving role throughout the cancer trajectory.
Knowledge Translation: Although family caregivers are profoundly impacted by a loved one's lung cancer diagnosis, the literature about caregiver burden, skills preparedness, and QOL is limited. Current evidence suggests that family caregivers can be negatively impacted by a loved one's cancer diagnosis. Caregiver-specific support interventions are needed to eliminate the burden of caregiving in lung cancer.
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References
Archbold, P. G., Stewart, B. J., Greenlick, M. R., & Harvath, T. (1990). Mutuality and preparedness as predictors of caregiver role strain. Research in Nursing and Health, 13, 375-384. doi:10.1002/nur.4770130605
Bakas, T., Lewis, R. R., & Parsons, J. E. (2001). Caregiving tasks among family caregivers of patients with lung cancer. Oncology Nursing Forum, 28, 847-854.
Bergelt, C., Koch, U., & Petersen, C. (2008). Quality of life in partners of patients with cancer. Quality of Life Research, 17, 653-663. doi:10.1007/s11136-008-9349-y
Brant, J. M., Beck, S. L., Dudley, W. N., Cobb, P., Pepper, G., & Miaskowski, C. (2011). Symptom trajectories during chemotherapy in outpatients with lung cancer colorectal cancer, or lymphoma. European Journal of Oncology Nursing, 15, 470-477.
Braun, M., Mikulincer, M., Rydall, A., Walsh, A., & Rodin, G. (2007). Hidden morbidity in cancer: Spouse caregivers. Journal of Clinical Oncology, 25, 4829-4834.
Brown, J. K., Cooley, M. E., Chernecky, C., & Sarna, L. (2011). A symptom cluster and sentinel symptom experienced by women with lung cancer [Online exclusive]. Oncology Nursing Forum, 38, E425-E435. doi:10.1188/11.ONF.E425-E435
Chambers, S. K., Girgis, A., Occhipinti, S., Hutchison, S., Turner, J., Morris, B., & Dunn, J. (2012). Psychological distress and unmet supportive care needs in cancer patients and carers who contact cancer helplines. European Journal of Cancer Care, 21, 213-223.
Cleeland, C. S., Mendoza, T. R., Wang, X. S., Woodruff, J. F., Palos, G. R., Richman, S. P., … Lu, C. (2011). Levels of symptom burden during chemotherapy for advanced lung cancer: Differences between public hospitals and a tertiary cancer center. Journal of Clinical Oncology, 29, 2859-2865. doi:10.1200/jco.2010.33.4425
Colgrove, L. A., Kim, Y., & Thompson, N. (2007). The effect of spirituality and gender on the quality of life of spousal caregivers of cancer survivors. Annals of Behavioral Medicine, 33(1), 90-98.
Corà, A., Partinico, M., Munafò, M., & Palomba, D. (2012). Health risk factors in caregivers of terminal cancer patients: A pilot study. Cancer Nursing, 35(1), 38-47. doi:10.1097/NCC.0b013e31820d0c23
Ferrell, B., Koczywas, M., Grannis, F., & Harrington, A. (2011). Palliative care in lung cancer. Surgical Clinics of North America, 91, 403-417. doi:10.1016/j.suc.2010.12.003
Ferrell, B., & Mazanec, P. (2009). Family caregivers. In A. Hurria & L. Balducci (Eds.), Geratric oncology: Treatment, assessment, and management (pp. 135-155). New York, NY: Springer.
Ferrell, B. R., Ferrell, B. A., Rhiner, M., & Grant, M. (1991). Family factors influencing cancer pain management. Postgraduate Medical Journal, 67(Suppl. 2), S64-S69.
Ferrell, B. R., Grant, M., Borneman, T., Juarez, G., & ter Veer, A. (1999). Family caregiving in cancer pain management. Journal of Palliative Medicine, 2, 185-195. doi:10.1089/jpm.1999.2.185
Ferrell, B. R., Grant, M., Chan, J., Ahn, C., & Ferrell, B. A. (1995). The impact of cancer pain education on family caregivers of elderly patients. Oncology Nursing Forum, 22, 1211-1218.
Ferris, F. D., Bruera, E., Cherny, N., Cummings, C., Currow, D., Dudgeon, D., … Von Roenn, J. H. (2009). Palliative cancer care a decade later: Accomplishments, the need, next steps—From the American Society of Clinical Oncology. Journal of Clinical Oncology, 27, 3052-3058. doi:10.1200/JCO.2008.20.1558
Fillenbaum, G. G., & Smyer, M. A. (1981). The development, validity, and reliability of the OARS Multidimensional Functional Assessment Questionnaire. Journal of Gerontology, 36, 428-434.
Floyd, A., Dedert, E., Ghate, S., Salmon, P., Weissbecker, I., Studts, J. L., … Sephton, S. E. (2011). Depression may mediate the relationship between sense of coherence and quality of life in lung cancer patients. Journal of Health Psychology, 16, 249-257.
Gaugler, J. E., Hanna, N., Linder, J., Given, C. W., Tolbert, V., Kataria, R., & Regine, W. F. (2005). Cancer caregiving and subjective stress: A multi-site, multi-dimensional analysis. Psycho-Oncology, 14, 771-785.
George, L. K., & Fillenbaum, G. G. (1985). OARS methodology. A decade of experience in geriatric assessment. Journal of the American Geriatrics Society, 33, 607-615.
Given, B. A., Given, C. W., & Sherwood, P. R. (2012). Family and caregiver needs over the course of the cancer trajectory. Journal of Supportive Oncology, 10(2), 57-64. doi:10.1016/j.suponc.2011.10.003
Given, B. A., Sherwood, P., & Given, C. W. (2011). Support for caregivers of cancer patients: Transition after active treatment. Cancer Epidemiology, Biomarkers and Prevention, 20, 2015-2021.
Graves, K. D., Arnold, S. M., Love, C. L., Kirsh, K. L., Moore, P. G., & Passik, S. D. (2007). Distress screening in a multidisciplinary lung cancer clinic: Prevalence and predictors of clinically significant distress. Lung Cancer, 55, 215-224. doi:10.1016/j.lungcan.2006.10.001
Gridelli, C., Ferrara, C., Guerriero, C., Palazzo, S., Grasso, G., Pavese, I., … Negrini, C. (2007). Informal caregiving burden in advanced non-small cell lung cancer: The HABIT study. Journal of Thoracic Oncology, 2, 475-480.
Hagedoorn, M., Sanderman, R., Bolks, H. N., Tuinstra, J., & Coyne, J. C. (2008). Distress in couples coping with cancer: A meta-analysis and critical review of role and gender effects. Psychological Bulletin, 134(1), 1-30.
Haley, W. E., LaMonde, L. A., Han, B., Burton, A. M., & Schonwetter, R. (2003). Predictors of depression and life satisfaction among spousal caregivers in hospice: Application of a stress process model. Journal of Palliative Medicine, 6, 215-224. doi:10.1089/109662103764978461
Harding, R., List, S., Epiphaniou, E., & Jones, H. (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.
Honea, N. J., Brintnall, R., Given, B., Sherwood, P., Colao, D. B., Somers, S. C., & Northouse, L. L. (2008). Putting Evidence Into Practice: Nursing assessment and interventions to reduce family caregiver strain and burden. Clinical Journal of Oncology Nursing, 12, 507-516.
Hwang, S. S., Chang, V. T., Alejandro, Y., Osenenko, P., Davis, C., Cogswell, J., … Kasimis, B. (2003). Caregiver unmet needs, burden, and satisfaction in symptomatic advanced cancer patients at a Veterans Affairs (VA) medical center. Palliative and Supportive Care, 1, 319-329.
Ji, J., Zöller, B., Sundquist, K., & Sundquist, J. (2012). Increased risks of coronary heart disease and stroke among spousal caregivers of cancer patients. Circulation, 125, 1742-1747.
Kim, Y., Baker, F., & Spillers, R. L. (2007). Cancer caregivers' quality of life: Effects of gender, relationship, and appraisal. Journal of Pain and Symptom Management, 34, 294-304. doi:10.1016/j.jpainsymman.2006.11.012
Kim, Y., Baker, F., Spillers, R. L., & Wellisch, D. K. (2006). Psychological adjustment of cancer caregivers with multiple roles. Psycho-Oncology, 15, 795-804.
Kim, Y., Carver, C. S., Deci, E. L., & Kasser, T. (2008). Adult attachment and psychological well-being in cancer caregivers: The mediational role of spouses' motives for caregiving. Health Psychology, 27(2, Suppl.), S144-S154.
Kim, Y., Carver, C. S., Spillers, R. L., Crammer, C., & Zhou, E. S. (2011). Individual and dyadic relations between spiritual well-being and quality of life among cancer survivors and their spousal caregivers. Psycho-Oncology, 20, 762-770. doi:10.1002/pon.1778
Kim, Y., & Given, B. A. (2008). Quality of life of family caregivers of cancer survivors: Across the trajectory of the illness. Cancer, 112(Suppl.), 2556-2568.
Kim, Y., Schulz, R., & Carver, C. S. (2007). Benefit-finding in the cancer caregiving experience. Psychosomatic Medicine, 69, 283-291.
Kim, Y., & Spillers, R. L. (2010). Quality of life of family caregivers at 2 years after a relative's cancer diagnosis. Psycho-Oncology, 19, 431-440.
Kim, Y., Wellisch, D. K., Spillers, R. L., & Crammer, C. (2007). Psychological distress of female cancer caregivers: Effects of type of cancer and caregivers' spirituality. Supportive Care in Cancer, 15, 1367-1374.
Kitrungroter, L., & Cohen, M. Z. (2006). Quality of life of family caregivers of patients with cancer: A literature review. Oncology Nursing Forum, 33, 625-632.
Lee, L. J., Chung, C. W., Chang, Y. Y., Lee, Y. C., Yang, C. H., Liou, S. H., … Wang, J. D. (2011). Comparison of the quality of life between patients with non-small-cell lung cancer and healthy controls. Quality of Life Research, 20, 415-423. doi:10.1007/s11136-010-9761-y
Lewis, F. M. (2004). Shifting perspectives: Family-focused oncology nursing research. Oncology Nursing Forum, 31, 288-292.
Lindau, S. T., Surawska, H., Paice, J., & Baron, S. R. (2011). Communication about sexuality and intimacy in couples affected by lung cancer and their clinical-care providers. Psycho-Oncology, 20, 179-185.
Mancini, J., Baumstarck-Barrau, K., Simeoni, M. C., Grob, J. J., Michel, G., Tarpin, C., … Auquier, P. (2011). Quality of life in a heterogeneous sample of caregivers of cancer patients: An in-depth interview study. European Journal of Cancer Care, 20, 483-492.
Manne, S., Badr, H., & Kashy, D. A. (2011). A longitudinal analysis of intimacy processes and psychological distress among couples coping with head and neck or lung cancers. Journal of Behavioral Medicine, 334-346. doi:10.1007/s10865-011-9349-1
Montgomery, R. V., Gonyea, J., & Hooyman, N. (1985). Caregiving and the experience of subjective and objective burden. Family Relations, 34(1), 19-26.
Montgomery, R. V., Stull, D. E., & Borgatta, E. F. (1985). Measurement and the analysis of burden. Research on Aging, 7(1), 137-152.
Murray, S. A., Kendall, M., Boyd, K., Grant, L., Highet, G., & Sheikh, A. (2010). Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: Secondary analysis of serial qualitative interviews. BMJ, 340, c2581. doi:10.1136/bmj.c2581
National Comprehensive Cancer Network. (2013). NCCN Clinical Practice Guidelines in Oncology: Palliative care [v.1.2013]. Retrieved from http://www.nccn.org/professionals/physician_gls/pdf/palliative.pdf
National Consensus Project. (2009). Clinical practice guidelines for quality palliative care. Retrieved from http://www.nationalconsensusproject.org/NCP_Clinical_Practice_Guidelines_3rd_Edition.pdf
Nijboer, C., Tempelaar, R., Triemstra, M., van den Bos, G. A., & Sanderman, R. (2001). The role of social and psychologic resources in caregiving of cancer patients. Cancer, 91, 1029-1039.
Northouse, L. L., Katapodi, M. C., Song, L., Zhang, L., & Mood, D. W. (2010). Interventions with family caregivers of cancer patients: Meta-analysis of randomized trials. CA: A Cancer Journal for Clinicians, 60, 317-339. doi:10.3322/caac.20081
Ostlund, U., Wennman-Larsen, A., Persson, C., Gustavsson, P., & Wengström, Y. (2010). Mental health in significant others of patients dying from lung cancer. Psycho-Oncology, 19, 29-37.
Persson, C., Ostlund, U., Wennman-Larsen, A., Wengström, Y., & Gustavsson, P. (2008). Health-related quality of life in significant others of patients dying from lung cancer. Palliative Medicine, 22, 239-247. doi:10.1177/0269216307085339
Prasertsri, N., Holden, J., Keefe, F. J., & Wilkie, D. J. (2011). Repressive coping style: Relationships with depression, pain, and pain coping strategies in lung cancer outpatients. Lung Cancer, 71, 235-240.
Rivera, H. R. (2009). Depression symptoms in cancer caregivers. Clinical Journal of Oncology Nursing, 13, 195-202.
Roth, D. L., Perkins, M., Wadley, V. G., Temple, E. M., & Haley, W. E. (2009). Family caregiving and emotional strain: Associations with quality of life in a large national sample of middle-aged and older adults. Quality of Life Research, 18, 679-688.
Ryan, P. J., Howell, V., Jones, J., & Hardy, E. J. (2008). Lung cancer, caring for the caregivers. A qualitative study of providing pro-active social support targeted to the carers of patients with lung cancer. Palliative Medicine, 22, 233-238. doi:10.1177/0269216307087145
Scherbring, M. (2002). Effect of caregiver perception of preparedness on burden in an oncology population [Online exclusive]. Oncology Nursing Forum, 29, E70-E76.
Schumacher, K. L., Stewart, B. J., & Archbold, P. G. (2007). Mutuality and preparedness moderate the effects of caregiving demand on cancer family caregiver outcomes. Nursing Research, 56, 425-433. doi:10.1097/01.NNR.0000299852.75300.03
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.
Sharpe, L., Butow, P., Smith, C., McConnell, D., & Clarke, S. (2004). The relationship between available support, unmet needs and caregiver burden in patients with advanced cancer and their carers. Psycho-Oncology, 14, 102-114.
Siminoff, L. A., Wilson-Genderson, M., & Baker, S., Jr. (2010). Depressive symptoms in lung cancer patients and their family caregivers and the influence of family environment. Psycho-Oncology, 19, 1285-1293.
Spillers, R. L., Wellisch, D. K., Kim, Y., Matthews, B. A., & Baker, F. (2008). Family caregivers and guilt in the context of cancer care. Psychosomatics, 49, 511-519. doi:10.1176/appi.psy.49.6.511
Stenberg, U., Ruland, C. M., & Miaskowski, C. (2010). Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncology, 19, 1013-1025. doi:10.1002/pon.1670
van Houtven, C. H., Ramsey, S. D., Hornbrook, M. C., Atienza, A. A., & van Ryn, M. (2010). Economic burden for informal caregivers of lung and colorectal cancer patients. Oncologist, 15, 883-893.
van Ryn, M., Sanders, S., Kahn, K., van Houtven, C., Griffin, J. M., Martin, M., … Rowland, J. (2011). Objective burden, resources, and other stressors among informal cancer caregivers: A hidden quality issue? Psycho-Oncology, 20, 44-52. doi:10.1002/pon.1703
Vos, M. S., Putter, H., van Houwelingen, H. C., & de Haes, H. C. (2011). Denial and social and emotional outcomes in lung cancer patients: The protective effect of denial. Lung Cancer, 72, 119-124.
Williams, A. L., & McCorkle, R. (2011). Cancer family caregivers during the palliative, hospice, and bereavement phases: A review of the descriptive psychosocial literature. Palliative and Supportive Care, 9, 315-325. doi:10.1017/S1478951511000265