Journal Club
Open Access Article

Sleep Characteristics of Family Caregivers of Individuals With a Primary Malignant Brain Tumor

Jean D. Pawl

Shih-Yu Lee

Patricia C. Clark

Paula R. Sherwood

sleep, sleep disturbance, sleep-wake disturbances, family caregivers, caregivers, primary brain tumors
ONF 2013, 40(2), 171-179. DOI: 10.1188/13.ONF.171-179

Purpose/Objectives: To describe the sleep characteristics of family caregivers of individuals with a primary malignant brain tumor (PMBT).

Design: Cross-sectional, correlational design using baseline data from a longitudinal study.

Setting: Neuro-oncology and neurosurgery clinics at an urban tertiary medical center in the United States.

Sample: 133 family caregivers recruited one to two months following diagnosis of family member's PMBT.

Methods: Subjective and objective measures of sleep were obtained via self-report and the use of accelerometers (three nights).

Main Research Variables: Sleep characteristics including sleep latency, total sleep time, wake after sleep onset, number of naps, number of arousals, sleep-wake cycle, and sleep quality.

Findings: Sleep latency in caregivers was, on average, 35 minutes (SD = 34.5)—more than twice as long as the norm of 15 minutes (t[113]) = 6.18, p < 0.01). Caregivers averaged a total sleep time of 5 hours and 57 minutes (SD = 84.6), significantly less than the recommended 7 hours (t[113] = -8, p < 0.01), and were awake in the night 15% of the time, significantly more than the norm of 10% (t[111] = 5.84, p < 0.01). Caregivers aroused an average of 8.3 times during nocturnal sleep (SD = 3.5, range = 2-21), with about 32% reporting poor or very poor sleep quality.

Conclusions: Caregivers experienced sleep impairments that placed them at risk for poor mental and physical health, and may compromise their ability to continue in the caregiving role.

Implications for Nursing: Nurses need to assess sleep in caregivers of individuals with PMBT and implement interventions to improve sleep.

Knowledge Translation: Sleep deprivation is common in family caregivers during the early stages of care for individuals with a PMBT. A single-item sleep quality question could be an easy but valuable tool in assessing sleep disturbances in family caregivers of individuals with a PMBT. The health trajectory of family caregivers warrants further longitudinal study, in addition to the examination of the bidirectional relationship of health status of care recipients and their family caregiver.

Jump to a section


    Acebo, C., & LeBourgeois, M. K. (2006). Actigraphy. Respiratory Care Clinics of North America, 12, 23-30. doi:10.1016/j.rcc.2005.11.010
    American Academy of Sleep Medicine. (2010). Practice guidelines. Retrieved from
    Andresen, E. M., Malmgren, J. A., Carter, W. B., & Patrick, D. L. (1994). Screening for depression in well older adults: Evaluation of a short form of the CES-D (Center for Epidemiologic Studies Depression Scale). American Journal of Preventive Medicine, 10, 77-84.
    Babson, K. A., Trainor, C. D., Feldner, M. T., & Blumenthal, H. (2010). A test of the effects of acute sleep deprivation on general and specific self-reported anxiety and depressive symptoms: An experimental extension. Journal of Behavior Therapy and Experimental Psychiatry, 41, 297-303. doi:10.1016/j.jbtep.2010.02.008
    Baker, F., Denniston, M., Zabora, J., Polland, A., & Dudley, W. N. (2002). A POMS short form for cancer patients: Psychometric and structural evaluation. Psycho-Oncology, 11, 273-281. doi:10.1002/pon.564
    Beaudreau, S. A., Spira, A. P., Gray, H. L., Depp, C. A., Long, J., Rothkopf, M., & Gallagher-Thompson, D. (2008). The relationship between objectively measured sleep disturbance and dementia family caregiver distress and burden. Journal of Geriatric Psychiatry and Neurology, 21, 159-165. doi:10.1177/0891988708316857
    Berger, A. M., Kuhn, B. R., Farr, L. A., Lynch, J. C., Agrawal, S., Chamberlain, J., & Von Essen, S. G. (2009). Behavioral therapy intervention trial to improve sleep quality and cancer-related fatigue. Psycho-Oncology, 18, 634-646. doi:10.1002/pon.1438
    Berger, A. M., Parker, K. P., Young-McCaughan, S., Mallory, G. A., Barsevick, A. M., Beck, S. L., … Hall, M. (2005). Sleep wake disturbances in people with cancer and their caregivers: State of the science [Online exclusive]. Oncology Nursing Forum, 32, E98-E126. doi:10.1188/05.ONF.E98-E126
    Bonnet, M. H. (2011). Acute sleep deprivation. In M. H. Kryger, T. Roth, & W. C. Dement (Eds.), Principles and practice of sleep medicine (5th ed., pp. 54-66). Philadelphia, PA: Elsevier Saunders.
    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:10.1037/0278-6133.25.2.220
    Buysse, D. J., Reynolds, C. F., 3rd, Monk, T. H., Berman, S. R., & Kupfer, D. J. (1989). The Pittsburgh Sleep Quality Index: A new instrument for psychiatric practice and research. Psychiatry Research, 28, 193-213. doi:10.1016/0165-1781(89)90047-4
    Carskadon, M. A., & Dement, W. C. (2011). Normal human sleep: An overview. In M. H. Kryger, T. Roth, & W. C. Dement (Eds.), Principles and practices of sleep medicine (5th ed., pp. 13-23). Philadelphia, PA: Elsevier Saunders.
    Carter, P. A. (2005). Bereaved caregivers' descriptions of sleep: Impact on daily life and the bereavement process [Online exclusive]. Oncology Nursing Forum, 32, E70-E75. doi:10.1188/05.ONF.E70-E75
    Carter, P. A. (2006). A brief behavioral sleep intervention for family caregivers of persons with cancer. Cancer Nursing, 29, 95-103. doi:10.1097/00002820-200603000-00003
    Cashman, R., Bernstein, L. J., Bilodeau, D., Bovett, G., Jackson, B., Yousefi, M., … Perry, J. (2007). Evaluation of an educational program for the caregivers of persons diagnosed with a malignant glioma. Canadian Oncology Nursing Journal, 17(1), 6-10.
    Castro, C. M., Lee, K. A., Bliwise, D. L., Urizar, G. G., Woodward, S. H., & King, A. C. (2009). Sleep patterns and sleep-related factors between caregiving and non-caregiving women. Behavioral Sleep Medicine, 7, 164-179. doi:10.1080/15402000902976713
    Cella, D. F., Jacobsen, P. B., Orav, E. J., Holland, J. C., Silberfarb, P. M., & Rafla, S. (1987). A brief POMS measure of distress for cancer patients. Journal of Chronic Diseases, 40, 939-942.
    Chandana, S. R., Movva, S., Arora, M., & Singh, T. (2008). Primary brain tumors in adults. American Family Physician, 77, 1423-1430.
    Cheung, Y. B., Liu, K. Y., & Yip, P. S. (2007). Performance of the CES-D and its short forms in screening suicidality and hopelessness in the community. Suicide and Life-Threatening Behavior, 37(1), 79-88. doi:10.1521/suli.2007.37.1.79
    Cole, C. S., & Richards, K. C. (2005). Sleep and cognition in people with Alzheimer's disease. Issues in Mental Health Nursing, 26, 687-698. doi:10.1080/01612840591008258
    Creese, J., Bédard, M., Brazil, K., & Chambers, L. (2008). Sleep disturbances in spousal caregivers of individuals with Alzheimer's disease. International Psychogeriatrics, 20, 149-161. doi:10.1017/S1041610207005339
    Curran, S. L., Andrykowski, M. A., & Studts, J. L. (1995). Short form of the Profile of Mood States (POMS-SF): Psychometric information. Psychological Assessment, 7, 80-83. doi:10.1037/1040-3590.7.1.80
    Dinges, D. F., Rogers, N. L., & Baynard, M. D. (2011). Chronic sleep deprivation. In M. H. Kryger, T. Roth, & W. C. Dement (Eds.), Principles and practices of sleep medicine (5th ed., pp. 67-75). Philadelphia, PA: Elsevier Saunders.
    Fonareva, I., Amen, A. M., Zajdel, D. P., Ellingson, R. M., & Oken, B. S. (2011). Assessing sleep architecture in dementia caregivers at home using an ambulatory polysomnographic system. Journal of Geriatric Psychiatry and Neurology, 24, 50-59. doi:10.1177/0891988710397548
    Grutsch, J. F., Wood, P. A., Du-Quiton, J., Reynolds, J. L., Lis, C. G., Levin, R. D., … Hrushesky, W. J. (2011). Validation of actigraphy to assess circadian organization and sleep quality in patients with advanced lung cancer. Journal of Circadian Rhythms, 9, 4. doi:10.1186/1740-3391-9-4
    Hamilton, N. A., Nelson, C. A., Stevens, N., & Kitzman, H. (2007). Sleep and psychological well-being. Social Indicators Research, 82, 147-163. doi:10.1007/s11205-006-9030-1
    Karnofsky, D. A., Abelmann, W. H., Craver, L. F., & Burchenal, J. H. (1948). The use of the nitrogen mustards in the palliative treatment of carcinoma. Cancer, 1, 634-656. doi:10.1002/1097-0142(194811)1:4<634::AID-CNCR2820010410>3.0.CO;2-L
    Keir, S. T., Guill, A. B., Carter, K. E., Boole, L. C., Gonzales, L., & Friedman, H. S. (2006). Differential levels of stress in caregivers of brain tumor patients—Observations from a pilot study. Supportive Care in Cancer, 14, 1258-1261. doi:10.1007/s00520-006-0090-1
    Kochar, J., Fredman, L., Stone, K. L., & Cauley, J. A. (2007). Sleep problems in elderly women caregivers depend on the level of depressive symptoms: Results of the Caregiver—Study of Osteoporotic Fractures. Journal of the American Geriatrics Society, 55, 2003-2009. doi:10.1111/j.1532-5415.2007.01434.x
    Lee, K. A. (2003). Impaired sleep. In V. Carrieri-Kohlman, A. M. Lindsey, & C. M. West (Eds.), Pathophysiological phenomena in nursing: Human responses to illness (pp. 363-385). St. Louis, MO: Saunders.
    Lee, K. A., Landis, C., Chasens, E. R., Dowling, G., Merritt, S., Parker, K. P., … Weaver, T. E. (2004). Sleep and chronobiology: Recommendations for nursing education. Nursing Outlook, 52, 126-133. doi:10.1016/j.outlook.2003.12.002
    Martens, M. P., Parker, J. C., Smarr, K. L., Hewett, J. E., Ge, B., Slaughter, J. R., & Walker, S. E. (2006). Development of a shortened Center for Epidemiological Studies Depression scale for assessment of depression in rheumatoid arthritis. Rehabilitation Psychology, 51, 135-139. doi:10.1037/0090-5550.51.2.135
    Mastin, D. F., Bryson, J., & Corwyn, R. (2006). Assessment of sleep hygiene using the Sleep Hygiene Index. Journal of Behavioral Medicine, 29, 223-227. doi:10.1007/s10865-006-9047-6
    Mayers, A. G., Grabau, E. A., Campbell, C., & Baldwin, D. S. (2009). Subjective sleep, depression and anxiety: Inter-relationships in a non-clinical sample. Human Psychopharmacology, 24, 495-501. doi:10.1002/hup.1041
    McCurry, S. M., Logsdon, R. G., Teri, L., & Vitiello, M. V. (2007). Sleep disturbances in caregivers of persons with dementia: Contributing factors and treatment implications. Sleep Medicine Reviews, 11, 143-153. doi:10.1016/j.smrv.2006.09.002
    McNair, D. M., Lorr, M., & Droppleman, L. F. (1971). EITS manual for the Profile of Mood States. San Diego, CA: Educational and Industrial Testing Service.
    Moldofsky, H. (1995). Sleep and the immune system. International Journal of Immunopharmacology, 17, 649-654. doi:10.1016/0192-0561(95)00051-3
    Monti, J. M., & Monti, D. (2000). Sleep disturbance in generalized anxiety disorder and its treatment. Sleep Medicine Reviews, 4, 263-276.
    Morgenthaler, T., Alessi, C., Friedman, L., Owens, J., Kapur, V., Boehlecke, B., … Swick, T. J. (2007). Practice parameters for the use of actigraphy in the assessment of sleep and sleep disorders: An update for 2007. Sleep, 30, 519-529.
    Muñoz, C., Juarez, G., Muñoz, M. L., Portnow, J., Fineman, I., Badie, B., … Ferrell, B. (2008). The quality of life of patients with malignant gliomas and their caregivers. Social Work in Health Care, 47, 455-478.
    Omay, S. B., & Vogelbaum, M. A. (2009). Current concepts and newer developments in the treatment of malignant gliomas. Indian Journal of Cancer, 46, 88-95. doi:10.4103/0019-509X.49146
    Papadimitriou, G. N., & Linkowski, P. (2005). Sleep disturbance in anxiety disorders. International Review of Psychiatry, 17, 229-236. doi:10.1080/0950260500104524
    Perrin, P. B., Heesacker, M., Stidham, B. S., Rittman, M. R., & Gonzalez-Rothi, L. J. (2008). Structural equation modeling of the relationship between caregiver psychosocial variables and functioning of individuals with stroke. Rehabilitation Psychology, 53, 54-62. doi:10.1037/0090-5550.53.1.54
    Qidwai, W., Baqir, M., Baqir, S. M., & Zehra, S. (2010). Knowledge, attitude, and practices regarding sleep and sleep hygiene among patients presenting to outpatient and emergency room services at a teaching hospital in Karachi. Pakistan Journal of Medical Sciences, 26, 629-633.
    Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385-401. doi:10.1177/014662167700100306
    Rowe, M. A., Kairalla, J. A., & McCrae, C. S. (2010). Sleep in dementia caregivers and the effect of a nighttime monitoring system. Journal of Nursing Scholarship, 42, 338-347. doi:10.1111/j.1547-5069.2010.01337.x
    Rowe, M. A., McCrae, C. S., Campbell, J. M., Benito, A. P., & Cheng, J. (2008). Sleep pattern differences between older adult dementia caregivers and older adult noncaregivers using objective and subjective measures. Journal of Clinical Sleep Medicine, 4, 362-369.
    Salander, P., & Spetz, A. (2002). How do patients and spouses deal with the serious facts of malignant glioma? Palliative Medicine, 16, 305-313. doi:10.1191/0269216302pm569oa
    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.
    Schnell, O., & Tonn, J. (2009). Unmet medical needs in glioblastoma management and optimal sequencing of the emerging treatment options. European Journal of Clinical and Medical Oncology, 1(2), 41-49.
    Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The Caregiver Health Effects Study. JAMA, 282, 2215-2219. doi:10.1001/jama.282.23.2215
    Shacham, S. (1983). A shortened version of the Profile of Mood States. Journal of Personality Assessment, 47, 305-306.
    Sherwood, P. R., Given, B. A., Doorenbos, A. Z., & Given, C. W. (2004). Forgotten voices: Lessons from bereaved caregivers of persons with a brain tumour. International Journal of Palliative Nursing, 10, 67-75.
    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
    Sherwood, P. R., Given, B. A., Given, C. W., Schiffman, R. F., Murman, D. L., von Eye, A., … Remer, S. (2007). The influence of caregiver mastery on depressive symptoms. Journal of Nursing Scholarship, 39, 249-255. doi:10.1111/j.1547-5069.2007.00176.x
    Simmonds, M. J. (2002). Physical function in patients with cancer: Psychometric characteristics and clinical usefulness of a physical performance test battery. Journal of Pain and Symptom Management, 24, 404-414. doi:10.1016/S0885-3924(02)00502-X
    Stein, M. B., & Mellman, T. A. (2011). Anxiety disorders. In M. H. Kryger, T. Roth, & W. C. Dement (Eds.), Principles and practice of sleep medicine (5th ed., pp. 1297-1310). Philadelphia, PA: Elsevier Saunders.
    Stepanski, E. J., & Wyatt, J. K. (2003). Use of sleep hygiene in the treatment of insomnia. Sleep Medicine Reviews, 7, 215-255.
    Sunseri, M., Liden, C. B., Farringdon, J., Pelletier, R., Safier, S., Stivoric, J., … Vishnubhatla, S. (2009). The SenseWear Armband as a sleep detection device. Retrieved from
    Van Dongen, H. P. A., Rogers, N. L., & Dinges, D. F. (2003). Sleep debt: Theoretical and empirical issues. Sleep and Biological Rhythms, 1, 5-13.
    Vaz Fragoso, C. A., & Gill, T. M. (2007). Sleep complaints in community-living older persons: A multifactorial geriatric syndrome. Journal of the American Geriatrics Society, 55, 1853-1866.
    von Känel, R., Dimsdale, J. E., Ancoli-Israel, S., Mills, P. J., Patterson, T. L., McKibbin, C. L., … Grant, I. (2006). Poor sleep is associated with higher plasma proinflammatory cytokine interleukin-6 and procoagulant marker fibrin D-dimer in older caregivers of people with Alzheimer's disease. Journal of the American Geriatrics Society, 54, 431-437. doi:10.1111/j.1532-5415.2005.00642.x
    Wideheim, A. K., Edvardsson, T., Påhlson, A., & Ahlström, G. (2002). A family's perspective on living with a highly malignant brain tumor. Cancer Nursing, 25, 236-244. doi:10.1097/00002820-200206000-00012
    Yates, J. W., Chalmer, B., & McKegney, F. P. (1980). Evaluation of patients with advanced cancer using the Karnofsky Performance Status. Cancer, 45, 2220-2224.