Pain, Sleep Disturbance, and Fatigue in Children With Leukemia and Their Parents: A Pilot Study

Vivian Gedaly-Duff

Kathryn A. Lee

Lillian M. Nail

H. Stacy Nicholson

Kyle P. Johnson

ONF 2006, 33(3), 641-646. DOI: 10.1188/06.ONF.641-646

Purpose/Objectives: To determine the feasibility of collecting symptom data at home from school-age children with acute lymphoblastic leukemia (ALL) and from their fathers and mothers and to obtain initial descriptions of pain, sleep disturbance, and fatigue experienced by the family members at home.

Design: Prospective and descriptive.

Setting: Children's homes in Oregon and southwestern Washington.

Sample: 9 children with ALL (aged 8-16 years), 6 fathers, and 7 mothers. The children received vincristine during the maintenance phase of their outpatient chemotherapy treatments.

Methods: With age-appropriate, paper-and-pencil diaries and wrist actigraphy, data were collected for three days in the families' homes. Families were reminded by telephone to complete their sleep and activity diaries.

Main Research Variables: Pain, sleep disturbance, and fatigue in school-age children and their fathers and mothers.

Findings: Most of the families who were approached indicated willingness to participate in the study. After receiving outpatient chemotherapy, the children reported pain, sleep disturbance, and fatigue data over three days. Fathers and mothers also reported symptoms. Actigraphy showed children waking more often during the night than mothers or fathers.

Conclusions: Children's pain, sleep disturbance, and fatigue suggest that the symptoms are influencing families' quality of life. Larger studies are needed to examine the symptom patterns and health outcomes of children, fathers, and mothers over the course of chemotherapy.

Implications for Nursing: Improving sleep and managing pain and fatigue after chemotherapy treatment for children with ALL may improve health outcomes for children and parents.

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    References

    Ancoli-Israel, S., Moore, P.J., & Jones, V. (2001). The relationship between fatigue and sleep in cancer patients: A review. European Journal of Cancer Care, 10, 245-255.

    Berde, C.B., Billet, A.L., & Collins, J.J. (2002). Symptom management in supportive care. In P.A. Pizzo & D.G. Poplack (Eds.), Principles and practice of pediatric oncology (4th ed., pp. 1301-1332). Philadelphia: Lippincott Williams and Wilkins.

    Brown, A.C., Smolensky, M.H., D'Alonzo, G.E., & Redman, D.P. (1990). Actigraphy: A means of assessing circadian patterns in human activity. Chronobiology International, 7, 125-133.

    Collins, J.J., Byrnes, M.E., Dunkel, I.J., Lapin, J., Nadel, T., Thaler, H.T., et al. (2000). The measurement of symptoms in children with cancer. Journal of Pain and Symptom Management, 19, 363-377.

    Dahl, R.E., & Lewin, D.S. (2002). Pathways to adolescent health sleep regulation and behavior. Journal of Adolescent Health, 31(6, Suppl.), 175-184.

    Davies, B., Whitsett, S.F., Bruce, A., & McCarthy, P. (2002). A typology of fatigue in children with cancer. Journal of Pediatric Oncology Nursing, 19, 12-21.

    Dodd, M., Janson, S., Facione, N., Faucett, J., Froelicher, E.S., Humphreys, J., et al. (2001). Advancing the science of symptom management. Journal of Advanced Nursing, 33, 668-676.

    Elek, S.M., Hudson, D.B., & Fleck, M.O. (1997). Expectant parents' experience with fatigue and sleep during pregnancy. Birth, 24, 49-54.

    Fehm, H.L., Benkowitsch, R., Kern, W., Fehm-Wolfsdorf, G., Pauschinger, P., & Born, J. (1986). Influences of corticosteroids, dexamethasone and hydrocortisone on sleep in humans. Neuropsychobiology, 16, 198-204.

    Ferrell, B.R., Rhiner, M., Shapiro, B., & Dierkes, M. (1994). The experience of pediatric cancer pain, Part I: Impact of pain on the family. Journal of Pediatric Nursing, 9, 368-379.

    Franck, L.S., Johnson, L.M., Lee, K., Hepner, C., Lambert, L., Passeri, M., et al. (1999). Sleep disturbances in children with human immunodeficiency virus infection. Pediatrics, 104(5). Retrieved June 25, 2005, from http://pediatrics.aappublications.org/cgi/content/abstract/104/5/e62

    Gay, C.L., Lee, K.A., & Lee, S.Y. (2004). Sleep patterns and fatigue in new mothers and fathers. Biological Research for Nursing, 5, 311-318.

    Gedaly-Duff, V., Nicholson, H.S., Lee, K.A., Nail, L.M., Stork, L., Perko, K.P., et al. (2005). Chemotherapy, pain, sleep, and fatigue in children and parents. Unpublished grant proposal, National Institutes of Health National Institute of Nursing Research, grant number: 1 R01 NR008570-01A2.

    Hare, M.L., & Hinds, P.S. (2004). Moving the research agenda forward for children and adolescents with cancer. Journal of Pediatric Oncology Nursing, 21, 121-122.

    Hockenberry, M.J., Hinds, P.S., Barrera, P., Bryant, R., Adams-McNeill, J., Hooke, C., et al. (2003). Three instruments to assess fatigue in children with cancer: The child, parent and staff perspectives. Journal of Pain and Symptom Management, 25, 319-328.

    Hockenberry-Eaton, M., Hinds, P.S., Alcoser, P., O'Neill, J.B., Euell, K., Howard, V., et al. (1998). Fatigue in children and adolescents with cancer. Journal of Pediatric Oncology Nursing, 15, 172-182.

    Lee, K., Cho, M., Miaskowski, C., & Dodd, M. (2004). Impaired sleep and rhythms in persons with cancer. Sleep Medicine Reviews, 8, 199-212.

    Lee, K.A., Hicks, G., & Nino-Murcia, G. (1991). Validity and reliability of a scale to assess fatigue. Psychiatry Research, 36, 291-298.

    Lewin, D.S., & Dahl, R.E. (1999). Importance of sleep in the management of pediatric pain. Journal of Developmental and Behavioral Pediatrics, 20, 244-252.

    Ljungman, G., Gordh, T., Sorensen, S., & Kreuger, A. (2000). Pain variations during cancer treatment in children: A descriptive survey. Pediatric Hematology and Oncology, 17, 211-221.

    Margolin, J.F., Steuber, C.P., & Poplack, D.G. (2002). Acute lymphoblastic leukemia. In P.A. Pizzo & D.G. Poplack (Eds.), Principles and practice of pediatric oncology (4th ed., pp. 489-544). Philadelphia: Lippincott Williams and Wilkins.

    McGrath, P.J., Hsu, E., Capelli, M., Luke, B., Goodman, J.T., & Dunn-Geier, J. (1990). Pain from pediatric cancer: A survey of an outpatient oncology clinic. Journal of Psychosocial Oncology, 8(2/3), 109-124.

    Melzack, R. (1987). The short-form McGill Pain Questionnaire. Pain, 30, 191-197.

    Melzack, R., & Katz, J. (1999). Pain measurement in persons in pain. In P.D. Wall & R. Melzack (Eds.), Textbook of pain (4th ed., pp. 411-421). Edinburgh, Scotland: Churchill Livingstone.

    Miaskowski, C. Dodd, M.J., & Lee, K.A. (2004). Symptom clusters: The new frontier in symptom management research. Journal of the National Cancer Institute Monographs, 32, 17-21.

    Miser, A.W., Dothage, J.A., Wesley, R.A., & Miser, J.S. (1987). The prevalence of pain in a pediatric and young adult cancer population. Pain, 29, 73-83.

    Nail, L. (2004). The importance of symptom clusters [Abstract]. Communicating Nursing Research, 37, 179.

    National Sleep Foundation. (2004, March). 2004 Sleep in America poll: Final report. Retrieved December 7, 2004, from http://www.sleepfoundation.org/_content//hottopics/2004SleepPollFinalReport.pdf

    Ries, L.A., Eisner, M.P., Kosary, C.L., Hankey, B.F., Miller, B.A., Clegg, L., et al. (2005). SEER cancer statistics review, 1975-2002. Retrieved June 19, 2005, from http://seer.cancer.gov/csr/1975_2002/

    Robinson, C.A. (1995). Beyond dichotomies in the nursing of persons and families. Image—Journal of Nursing Scholarship, 27, 116-120.

    Sadeh, A., & Acebo, C. (2002). The role of actigraphy in sleep medicine. Sleep Medicine Reviews, 6, 113-124.

    Sadeh, A., Raviv, A., & Gruber, R. (2000). Sleep patterns and sleep disruptions in school-age children. Developmental Psychology, 36, 291-301.

    Savedra, M.C., Holzemer, W.L., Tesler, M.D., & Wilkie, D.J. (1993). Assessment of postoperation pain in children and adolescents using the adolescent pediatric pain tool. Nursing Research, 42, 5-9.

    Savedra, M.C., Tesler, M.D., Holzemer, W.L., Wilkie, D.J., & Ward, J.A. (1989). Pain location: Validity and reliability of body outline markings by hospitalized children and adolescents. Research in Nursing and Health, 12, 307-314.

    Sawyer, M., Antoniou, G., Toogood, I., & Rice, M. (1997). Childhood cancer: A two-year prospective study of the psychological adjustment of children and parents. Journal of the American Academy of Child and Adolescent Psychiatry, 36, 1736-1743.

    Sawyer, M., Antoniou, G., Toogood, I., Rice, M., & Baghurst, P. (2000). Childhood cancer: A 4-year prospective study of the psychological adjustment of children and parents. Journal of Pediatric Hematology/Oncology, 22, 214-220.

    Seagull, E.A. (2000). Beyond mothers and children: Finding the family in pediatric psychology. Journal of Pediatric Psychology, 25, 161-169.

    Tesler, M.D., Savedra, M.C., Holzemer, W.L., Wilkie, D.J., Ward, J.A., & Paul, S.M. (1991). The word-graphic rating scale as a measure of children's and adolescents' pain intensity. Research in Nursing and Health, 14, 361-371.

    Theobald, D.E. (2004). Cancer pain, fatigue, distress, and insomnia in cancer patients. Clinical Cornerstone, 6(Suppl. 1D), S15-S21.

    Van Cleve, L., Bossert, E., Beecroft, P., Adlard, K., Alvarez, O., & Savedra, M.C. (2004). The pain experience of children with leukemia during the first year after diagnosis. Nursing Research, 53, 1-10.

    Vgontzas, A.N., & Chrousos, G.P. (2002). Sleep, the hypothalamic-pituitary-adrenal axis, and cytokines: Multiple interactions and disturbances in sleep disorders. Endocrinology and Metabolism Clinics of North America, 31, 15-36.

    Wilkie, D.J., Holzemer, W.L., Tesler, M.D., Ward, J.A., Paul, S.M., & Savedra, M.C. (1990). Measuring pain quality: Validity and reliability of children's and adolescents' pain language. Pain, 41, 151-159.

    Woodgate, R.L., & Degner, L.F. (2002). "Nothing is carved in stone!": Uncertainty in children with cancer and their families. European Journal of Oncology Nursing, 6, 191-204.

    Woodgate, R.L., Degner, L.F., & Yanofsky, R. (2003). A different perspective to approaching cancer symptoms in children. Journal of Pain and Symptom Management, 26, 800-817.

    Young, A.H., Sharpley, A.L., Campling, G.M., Hockney, R.A., & Cowen, P.J. (1994). Effects of hydrocortisone on brain 5-HT function and sleep. Journal of Affective Disorders, 32, 139-146.