Symptoms, Coping, and Quality of Life in Pediatric Brain Tumor Survivors: A Qualitative Study

Gail Macartney

Dawn Stacey

Margaret B. Harrison

Elizabeth VanDenKerkhof

pediatric oncology, neurologic malignancies, nursing research qualitative, quality of life, survivorship
ONF 2014, 41(4), 390-398. DOI: 10.1188/14.ONF.390-398

Purpose/Objectives: To explore the symptom experience, coping strategies, and children's descriptions of their quality of life (QOL) after treatment for a brain tumor.

Research Approach: An interpretive descriptive qualitative study.

Setting: A pediatric hospital setting in Ontario, Canada.

Participants: 12 children aged 9-18 years.

Methods: Content analysis of semistructured interviews was guided by interpretive description methodology.

Findings: Children described symptoms including feeling tired, pain, headaches, emotional problems, difficulty thinking and remembering, problems with sleep, physical problems, and weight changes. Symptoms interfered with physical activity, keeping up with school, maintaining appearances, and communication. Coping strategies included reconditioning, taking breaks, taking medication, challenging themselves, volunteering, maintaining friendships, laughing, and using aids.

Conclusions: Survivors experienced multiple symptoms that had an effect on their life, but overall, they described good QOL.

Interpretation: Caregivers need to understand the complexity of their patient's symptom experience and its impact on his or her daily life. Coping strategies can be identified to help mitigate potentially negative QOL outcomes.

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    Armstrong, G. T. (2010). Long-term survivors of childhood central nervous system malignancies: The experience of the Childhood Cancer Survivor Study. European Journal of Paediatric Neurology, 14, 298-303. doi:10.1016/j.ejpn.2009.12.006
    Bhatia, S., & Landier, W. (2005). Evaluating survivors of pediatric cancer. Cancer Journal, 11, 340-354.
    Carpentieri, S. C., Meyer, E. A., Delaney, B. L., Victoria, M. L., Gannon, B. K., Doyle, J. M., & Kieran, M. W. (2003). Psychosocial and behavioral functioning among pediatric brain tumor survivors. Journal of Neuro-Oncology, 63, 279-287.
    Cohen, M., & Numa, M. (2011). Posttraumatic growth in breast cancer survivors: a comparison of volunteers and non-volunteers. Psycho-Oncology, 20, 69-76. doi:10.1002/pon.1709
    Eiser, C. (2004). Children with cancer: The quality of life. Mahway, NJ: Lawrence Erlbaum.
    Ellison, L. F., De, P., Mery, L. S., & Grundy, P. E. (2009). Canadian cancer statistics at a glance: Cancer in children. Canadian Medical Association Journal, 180, 422-424. doi:10.1503/cmaj.081155
    Faria, C. M., Rutka, J. T., Smith, C., & Kongkham, P. (2011). Epigenetic mechanisms regulating neural development and pediatric brain tumor formation. Journal of Neurosurgery Pediatrics, 8, 119-132. doi:10.3171/2011.5.PEDS1140
    Francis, J. J., Johnston, M., Robertson, C., Glidewell, L., Entwistle, V., Eccles, M. P., & Grimshaw, J. M. (2010). What is an adequate sample size? Operationalising data saturation for theory-based interview studies. Psychology and Health, 25, 1229-1245. doi:10.1080/08870440903194015
    Giorgi, A. (1985). Phenomenology and psychological research. Pittsburgh, PA: Duquesne University Press.
    Gottardo, N. G., & Gajjar, A. (2008). Chemotherapy for malignant brain tumors of childhood. Journal of Child Neurology, 23, 1149-1159. doi:10.1177/0883073808321765
    Grunfeld, E., & Earle, C. (2010). The interface between primary and oncology specialty care: Treatment through survivorship. Journal of the National Cancer Institute. Monographs, 40, 25-30. doi:10.1093/jncimonographs/lgq002
    Lincoln, E., & Guba, Y. (1985). Naturalistic inquiry. California: Sage Publications.
    Macartney, G., Harrison, M. B., VanDenKerkhof, E., Stacey, D., & McCarthy, P. (2014). Quality of life and symptoms in pediatric brain tumor survivors: A systematic review. Journal of Pediatric Oncology Nursing, 31, 65-77. doi:10.1177/1043454213520191
    Macartney, G., VanDenKerkhof, E., Harrison, M., & Stacey, D. (2014). Symptom experience and quality of life in pediatric brain tumor survivors: A cross-sectional study. Journal of Pain and Symptom Management. Advance online publication. doi:10.1016/j.jpainsymman.2013.12.243
    Maher, C. O., & Raffel, C. (2004). Neurosurgical treatment of brain tumors in children. Pediatric Clinics of North America, 51, 327-357.
    Mainprize, T. G., Taylor, M. D., & Rutka, J. T. (2000). Perspectives in pediatric neurosurgery. Childs Nervous System, 16, 809-820.
    Matthews, B. A., Baker, F., Hann, D. M., Denniston, M., & Smith, T. G. (2002). Health status and life satisfaction among breast cancer survivor peer support volunteers. Psycho-Oncology, 11, 199-211.
    Meyerson, D. A., Grant, K. E., Carter, J. S., & Kilmer, R. P. (2011). Posttraumatic growth among children and adolescents: a systematic review. Clinical Psychology Review, 31, 949-964. doi:10.1016/j.cpr.2011.06.003
    Monje, M., & Fisher, P. G. (2011). Neurological complications following treatment of children with brain tumors. Journal of Pediatric Rehabilitation Medicine, 4, 31-36. doi:10.3233/PRM-2011-0150
    Pollack, I. F. (2011). Multidisciplinary management of childhood brain tumors: A review of outcomes, recent advances, and challenges. Journal of Neurosurgery Pediatrics, 8, 135-148. doi:10.3171/2011.5.PEDS1178
    Ruland, C. M., Hamilton, G. A., & Schjodt-Osmo, B. (2009). The complexity of symptoms and problems experienced in children with cancer: A review of the literature. Journal of Pain and Symptom Management, 37, 403-418. doi:10.1016/j.jpainsymman.2008.03.009
    Siu, A. M., Shek, D. T., & Law, B. (2012). Prosocial norms as a positive youth development construct: A conceptual review. Retrieved from
    Sumalla, E. C., Ochoa, C., & Blanco, I. (2009). Posttraumatic growth in cancer: reality or illusion? Clinical Psychology Review, 29, 24-33.
    Taylor, R. M., Gibson, F., & Franck, L. S. (2008). A concept analysis of health-related quality of life in young people with chronic illness. Journal of Clinical Nursing, 17, 1823-1833. doi:10.1111/j.1365-2702.2008.02379.x
    Thorne, S. (2008). Interpretive description. Walnut Creek, CA: Left Coast Press.
    Thorne, S., Kirkham, S. R., & MacDonald-Emes, J. (1997). Interpretive description: A noncategorical qualitative alternative for developing nursing knowledge. Research in Nursing and Health, 20, 169-177.
    Turner-Sack, A. M., Menna, R., & Setchell, S. R. (2012). Posttraumatic growth, coping strategies, and psychological distress in adolescent survivors of cancer. Journal of Pediatric Oncology Nursing, 29, 70-79. doi:10.1177/1043454212439472
    Vatne, T. M., Slaugther, L., & Ruland, C. M. (2010). How children with cancer communicate and think about symptoms. Journal of Pediatric Oncology Nursing, 27, 24-32. doi:10.1177/1043454209349358
    Walter, A. W., & Hilden, J. M. (2004). Brain tumors in children. Current Oncology Reports, 6, 438-444.
    Woodgate, R. L. (2008). Feeling states: a new approach to understanding how children and adolescents with cancer experience symptoms. Cancer Nursing, 31, 229-238. doi:10.1097/
    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. doi:10.1016/S0885-3924(03)00285-9
    Zebrack, B. J., Stuber, M. L., Meeske, K. A., Phipps, S., Krull, K. R., Liu, Q., … Zeltzer, L. K. (2012). Perceived positive impact of cancer among long-term survivors of childhood cancer: A report from the childhood cancer survivor study. Psycho-Oncology, 21, 630-639.