Abstract
Although diagnosed acutely, pediatric cancer and its many lasting sequelae are now considered a chronic condition thanks to an 80% overall survival rate in the United States. Psychosocial needs of children and adolescents with cancer change throughout the illness trajectory from the time of diagnosis, during treatment, when transitioning off therapy, and into long-term survivorship. Patients who face relapsed disease or death have additional, unique needs. This chapter provides an overview of the psychosocial functioning of pediatric cancer patients and their families at distinct phases of the cancer care continuum. The potential roles pediatric psychologists may fill and the services they may provide at each phase are described, including screening, prevention, intervention, cognitive assessment, support, and advocacy. The importance of psychology’s function in improving emotional, social, academic, and health outcomes for these patients is highlighted. Resources for additional information and clinical practice guidelines are provided.
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References
Agency for Healthcare Research and Quality. (2018). The Academy: Integrating behavioral health and primary care. https://integrationacademy.ahrq.gov/products/playbooks/behavioral-health-and-primary-care. Accessed July 2018.
Alderfer, M. A., Long, K. A., Lown, E. A., Marsland, A. L., Ostrowski, N. L., Hock, J. M., et al. (2010). Psychosocial adjustment of siblings of children with cancer: A systematic review. Psychooncology, 19(8), 789–805. https://doi.org/10.1002/pon.1638
Allen, J., Willard, V. W., Klosky, J. L., Li, C., Srivastava, D. K., Robison, L. L., et al. (2018). Posttraumatic stress-related psychological functioning in adult survivors of childhood cancer. Journal of Cancer Survivorship, 12(2), 216–223. https://doi.org/10.1007/s11764-017-0660-x
American Academy of Pediatric Section on Integrative Medicine. (2016). Mind-body therapies in children and youth. Pediatrics, 138(3), e20161896. https://doi.org/10.1542/peds.2016-1896
American Academy of Pediatrics Section on Hematology/Oncology. (2004). Guidelines for Pediatric cancer Centers. Pediatrics, 113(6), 1833–1835. https://doi.org/10.1542/peds.113.6.1833
American Academy of Pediatrics Section on Hospice and Palliative Medicine and Committee on Hospital Care. (2013). Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics, 132(5), 966–972. https://doi.org/10.1542/peds.2013-2731
Annett, R. D., Patel, S. K., & Phipps, S. (2015). Monitoring and assessment of neuropsychological outcomes as a standard of care in pediatric oncology. Pediatric Blood & Cancer, 62(S5), S460–S513. https://doi.org/10.1002/pbc.25749
Armstrong, G. T., Liu, Q., Yasui, Y., Huang, S., Ness, K. N., Leisenring, W., et al. (2009). Long-term outcomes among adult survivors of childhood central nervous system malignancies in the childhood cancer survivor study. Journal of the National Cancer Institute, 101(13), 946–958. https://doi.org/10.1093/jnci/djp148
Armstrong, G. T., Kawashima, T., Leisenring, W., Stratton, K., Stovall, M., Hudson, M. M., et al. (2014). Aging and risk of severe, disabling, life-threatening, and fatal events in the childhood cancer survivor study. Journal of Clinical Oncology, 32(12), 1218–1227. https://doi.org/10.1200/JCO.2013.51.1055
Barakat, L. P., Alderfer, M. A., & Kazak, A. E. (2006). Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers. Journal of Pediatric Psychology, 31(4), 413–419. https://doi.org/10.1093/jpepsy/jsj058
Barrera, M., D’Agostino, N. M., Gibson, J., Gilbert, T., Weksberg, R., & Malkin, D. (2004). Predictors and mediators of psychological adjustment in mothers of children newly diagnosed with cancer. Psychooncology, 13(9), 630–641. https://doi.org/10.1002/pon.765
Bhatia, S., Landier, W., Shangguan, M., Hageman, L., Schaible, A. N., Carter, A. R., et al. (2012). Non-adherence to oral mercaptopurine and risk of relapse in Hispanic and non-Hispanic white children with acute lymphoblastic leukemia: A report from the children’s Oncology Group. Journal of Clinical Oncology, 30(17), 2094–2101. https://doi.org/10.1200/JCO.2011.38.9924
Birnie, K. A., Noel, M., Chambers, C. T., Uman, L. S., & Parker, J. A. (2018). Psychological interventions for needle-related procedural pain and distress in children and adolescents. Cochrane Database of Systematic Reviews, 10, CD005179. https://doi.org/10.1002/14651858.CD005179.pub4
Bitsko, M. J., Cohen, D., Dillon, R., Harvey, J., Krull, K., & Klosky, J. L. (2016). Psychosocial late effects in pediatric cancer survivors: A report from the children’s Oncology Group. Pediatric Blood & Cancer, 63(2), 337–343. https://doi.org/10.1002/pbc.25773
Boman, K. K., Kjallander, Y., Eksborg, S., & Becker, J. (2013). Impact of prior traumatic life events on parental early stage reactions following a child’s cancer. PLoS One, 8(3), e57556. https://doi.org/10.1371/journal.pone.0057556
Brand McCarthy, S. R., Kang, T. I., & Mack, J. W. (2019). Inclusion of children in the initial conversation about their cancer diagnosis: Impact on parent experiences of the communication process. Supportive Care in Cancer, 27, 1319–1324. https://doi.org/10.1007/s00520-019-4653-3
Brinkman, T. M., Recklitis, C. J., Michel, G., Grootenhuis, M. A., & Klosky, J. L. (2018). Psychological symptoms, social outcomes, socioeconomic attainment, and health behaviors among survivors of childhood cancer: Current state of the literature. Journal of Clinical Oncology, 36(21), 2190–2198. https://doi.org/10.1200/JCO.2017.76.5552
Butow, P., Palmer, S., Pai, A., Goodenough, B., Luckett, T., & King, M. (2010). Review of adherence-related issues in adolescents and young adults with cancer. Journal of Clinical Oncology, 28(32), 4800–4809. https://doi.org/10.1200/JCO.2009.22.2802
Caes, L., Vervoort, T., Devos, P., Verlooy, J., Benoit, Y., & Goubert, L. (2014). Parental distress and catastrophic thoughts about child pain: Implications for parental protective behavior in the context of child leukemia-related medical procedures. The Clinical Journal of Pain, 30(9), 787–799. https://doi.org/10.1097/AJP.0000000000000028
Cheng, B. T., Rost, M., De Clercq, E., Arnold, L., Elger, B. S., & Wangmo, T. (2019). Palliative care initiation in pediatric oncology patients: A systematic review. Cancer Medicine, 8(1), 3–12. https://doi.org/10.1002/cam4.1907
Children’s Oncology Group. (2018). Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers, Version 5.0. www.survivorshipguidelines.org. Accessed Apr 2021.
Clerici, C. A., Massimino, M., Casanova, M., Cefalo, G., Terenziani, M., Vasquez, R., et al. (2008). Psychological referral and consultation for adolescents and young adults with cancer treated at pediatric oncology unit. Pediatric Blood & Cancer, 51(1), 105–109. https://doi.org/10.1002/pbc.21484
Collins, J. J., Byrnes, M. E., 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(5), 363–377. https://doi.org/10.1016/S0885-3924(00)00127-5
Conklin, H. M., Reddick, W. E., Ashford, J., Ogg, S., Howard, S. C., Morris, E. B., et al. (2010). Long-term efficacy of methylphenidate in enhancing attention regulation, social skills, and academic abilities of childhood cancer survivors. Journal of Clinical Oncology, 28(29), 4465–4472. https://doi.org/10.1200/JCO.2010.28.4026
Conklin, H. M., Ashford, J. M., Clark, K. N., Martin-Elbahesh, K., Hardy, K. K., Merchant, T. E., et al. (2017). Long-term efficacy of computerized cognitive training among survivors of childhood cancer: A single-blind randomized controlled trial. Journal of Pediatric Psychology, 42(2), 220–231. https://doi.org/10.1093/jpepsy/jsw057
Cordaro, G., Veneroni, L., Massimino, M., & Clerici, C. A. (2012). Assessing psychological adjustment in siblings of children with cancer: Parents’ perspectives. Cancer Nursing, 35(1), E42–E50. https://doi.org/10.1097/ncc.0b013e3182182869
Cox, L. E., Kenney, A. E., Harman, J. L., Jurbergs, N., Molnar, A. E., & Willard, V. V. (2019). Psychosocial functioning of young children treated for cancer: Findings from a clinical sample. Journal of Pediatric Oncology Nursing, 36(1), 17–23. https://doi.org/10.1177/1043454218813905
Coyne, I., & Gallagher, P. (2011). Participation in communication and decision-making: Children and young people’s experiences in a hospital setting. Journal of Clinical Nursing, 20(15–16), 2334–2343. https://doi.org/10.1111/j.1365-2702.2010.03582.x
Coyne, I., O’Mathuna, D. P., Gibson, F., Shields, L., Leclercq, E., & Sheaf, G. (2016). Interventions for promoting participation in shared decision-making for children with cancer. Cochrane Database of Systematic Reviews, 11, CD008970. https://doi.org/10.1002/14651858.CD008970.pub3
Crabtree, V. M., Rach, A. M., Schellinger, K. B., Russell, K. M., Hammarback, T., & Mandrell, B. N. (2015). Changes in sleep and fatigue in newly treated pediatric oncology patients. Supportive Care in Cancer, 23, 393–401. https://doi.org/10.1007/s00520-014-2356-3
DeCourcey, D. D., Silverman, M., Oladunjoye, A., & Wolfe, J. (2019). Advance care planning and parent-reported end-of-life outcomes in children, adolescents, and young adults with complex chronic conditions. Pediatric Critical Care, 47(1), 101–108. https://doi.org/10.1097/CCM.0000000000003472
DeJong, M., & Fombonne, E. (2006). Depression in paediatric cancer: An overview. Psycho-Oncology, 15(7), 553–566. https://doi.org/10.1002/pon.1002
DeWalt, D., Gross, H., Gipson, D., Selewski, D., DeWitt, E., Dampier, C., et al. (2015). PROMIS® pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions. Quality of Life Research, 24, 2195–2208. https://doi.org/10.1007/s11136-015-0953-3
Dolgin, M. J., Phipps, S., Fairclough, D. L., Sahler, O. J., Askins, M., Noll, R. B., et al. (2007). Trajectories of adjustment in mothers of children with newly diagnosed cancer: A natural history investigation. Journal of Pediatric Psychology, 32(7), 771–782. https://doi.org/10.1093/jpepsy/jsm013
DuHamel, K. N., Redd, W. H., & Vickberg, S. M. (1999). Behavioral interventions in the diagnosis, treatment and rehabilitation of children with cancer. Acta Oncologica, 38(6), 719–734. https://doi.org/10.1080/028418699432879
Eche, I. J., Eche, I. M., & Aronowitz, T. (2020). An integrative review of factors associated with symptom burden at the end of life in children with cancer. Journal of Pediatric Oncology Nursing, 37(4), 284–295. https://doi.org/10.1177/1043454220909805
Eiser, C., Hill, J. J., & Vance, Y. H. (2000). Examining the psychological consequences of surviving childhood cancer: Systematic review as a research method in pediatric psychology. Journal of Pediatric Psychology, 25(6), 449–460. https://doi.org/10.1093/jpepsy/25.6.449
Fedele, D. A., Hullmann, S. E., Chaffin, M., Kenner, C., Fisher, M. J., Kirk, K., et al. (2013). Impact of a parent-based interdisciplinary intervention for mothers on adjustment in children newly diagnosed with cancer. Journal of Pediatric Psychology, 38(5), 531–540. https://doi.org/10.1093/jpepsy/jst010
Festa, R. S., Tamaroff, M. H., Chasalow, F., & Lanzkowsky, P. (1992). Therapeutic adherence to oral medication regimens by adolescents with cancer: I. laboratory assessment. Journal of Pediatrics, 120(5), 807–811. https://doi.org/10.1016/S0022-3476(05)80256-2
Foster, T. L., Gilmer, M. J., Davies, B., Barrera, M., Fairclough, D., Vannatta, K., et al. (2009). Bereaved parents’ and siblings’ reports of legacies created by children with cancer. Journal of Pediatric Oncology Nursing, 26(6), 369–376. https://doi.org/10.1177/1043454209340322
Frederick, N. N., & Mack, J. W. (2018). Adolescent patient involvement in discussions about relapsed or refractory cancer with oncology clinicians. Pediatric Blood & Cancer, 65(4), e26918. https://doi.org/10.1002/pbc.26918
Fried, T. R., Redding, C. A., Robbins, M. L., Paiva, A., O’Leary, J. R., & Iannone, L. (2010). Stages of change for the component behaviors of advance care planning. Journal of the American Geriatrics Society, 58(12), 2329–2336. https://doi.org/10.1111/j.1532-5415.2010.03184.x
Fuemmeler, B. F., Elkin, T. D., & Mullins, L. L. (2002). Survivors of childhood brain tumors: Behavioral, emotional, and social adjustment. Clinical Psychology Review, 22(4), 547–586. https://doi.org/10.1016/S0272-7358(01)00120-9
Gerhardt, C. A., Dixon, M., Miller, K., Vannatta, K., Valerius, K. S., Correll, J., et al. (2007). Educational and occupational outcomes among survivors or childhood cancer during the transition to emerging adulthood. Journal of Developmental Behavioral Pediatrics, 28(6), 448–455. https://doi.org/10.1097/DBP.0b013e31811ff8e1
Gerhardt, C. A., Lehmann, V., Long, K. A., & Alderfer, M. A. (2015). Supporting siblings as a standard of care in pediatric oncology. Journal of Pediatric Psychology, 62(S5), S750–S804. https://doi.org/10.1002/pbc.25821
Gershon, R. C., Wagster, M. V., Hendrie, H. C., Fox, N. A., Cook, K. F., & Nowinski, C. J. (2013). NIH toolbox for assessment of neurological and behavioral function. Neurology, 80(11 Suppl 3), S2–S6. https://doi.org/10.1212/WNL.0b013e3182872e5f
Hardy, K. K., Willard, V. W., Allen, T. M., & Bonner, M. J. (2013). Working memory training in survivors of pediatric cancer: A randomized pilot study. Psycho-Oncology, 22(8), 1856–1865. https://doi.org/10.1002/pon.3222
Harman, J. L., Wilkins, M., & Jurbergs, N. (2019). Hematologic/oncologic disorders and HIV. In A. G. Dempsey (Ed.), Pediatric health conditions in schools: A clinician’s guide for working with children, families, and educators (pp. 361–384). Oxford University Press.
Harper, F. W., Peterson, A. M., Uphold, H., Albrecht, T. L., Taub, J. W., Orom, H., et al. (2013). Longitudinal study of parent caregiving self-efficacy and parent stress reactions with pediatric cancer treatment procedures. Psycho-Oncology, 22(7), 1658–1664. https://doi.org/10.1002/pon.3199
Harper, F. W., Albrecht, T. L., Trentacosta, C. J., Taub, J. W., Phipps, S., & Penner, L. A. (2019). Understanding differences in the long-term psychosocial adjustment of pediatric cancer patients and their parents: An individual differences resources model. Translational Behavioral Medicine, 9(3), 514–522. https://doi.org/10.1093/tbm/ibz025
Hein, K., Knochel, K., Zaimovic, V., Reimann, D., Monz, A., Heitkamp, N., et al. (2020). Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study. Palliative Medicine, 34(3), 300–308. https://doi.org/10.1177/0269216319900317
Hoekstra-Weebers, J. E. H. M., Jaspers, J. P. C., Kamps, W. A., & Klip, E. C. (2001). Psychological adaptation and social support of parents of pediatric cancer patients: A prospective longitudinal study. Journal of Pediatric Psychology, 26(4), 225–235. https://doi.org/10.1093/jpepsy/26.4.225
Hommel, K. A., Ramsey, R. R., Rich, K. L., & Ryan, J. L. (2017). Adherence to pediatric treatment regimens. In M. C. Roberts & R. G. Steele (Eds.), Handbook of pediatric psychology (5th ed., pp. 119–133). The Guilford Press.
Houtzager, B. A., Grootenhuis, M. A., Hoekstra-Weebers, J. E. H. M., Caron, H. N., & Last, B. F. (2003). Psychosocial functioning in siblings of paediatric cancer patients one to six months after diagnosis. European Journal of Cancer, 39(10), 1423–1432. https://doi.org/10.1016/S0959-8049(03)00275-2
Howard Sharp, K. M., Rowe, A. E., Russell, K., Long, A., & Phipps, S. (2015). Predictors of psychological functioning in children with cancer: Disposition and cumulative life stressors. Psycho-Oncology, 24(7), 779–786. https://doi.org/10.1002/pon.3643
Hudson, M. M., Ness, K. K., Gurney, J. G., Mulrooney, D. A., Chemaitilly, W., Krull, K. R., et al. (2013). Clinical ascertainment of health outcomes among adults treated for childhood cancer. Journal of the American Medical Association, 309(22), 2371–2381. https://doi.org/10.1001/jama.2013.6296
Husson, O., Zebrack, B. J., Aguilar, C., Hayes-Lattin, B., & Cole, S. (2017). Cancer in adolescents and young adults: Who remains at risk of poor social functioning over time? Cancer, 123(14), 2743–2751. https://doi.org/10.1002/cncr.30656
Jacola, L. M., Edelstein, K., Liu, W., Pui, C. H., Hayashi, R., Kadan-Lottick, N. S., et al. (2016). Cognitive, behavior, and academic functioning in adolescent and young adult survivors or childhood acute lymphoblastic leukaemia: A report from the Childhood Cancer Study. Lancet Psychiatry, 3(10), 965–972. https://doi.org/10.1016/S2215-0366(16)30283-8
Jalmsell, L., Kreicbergs, U., Onelöv, E., Steineck, G., & Henter, J. I. (2006). Symptoms affecting children with malignancies during the last month of life. Pediatrics, 117(4), 1314–1320. https://doi.org/10.1542/peds.2005-1479
Jurbergs, N., Long, A., Ticona, L., & Phipps, S. (2009). Symptoms of posttraumatic stress in parents of children with cancer: Are they elevated relative to parents of healthy children? Journal of Pediatric Psychology, 34(1), 4–13. https://doi.org/10.1093/jpepsy/jsm119
Kanitz, J. L., Moneta, M. E., Camus, M., & Seifert, G. (2012). Keeping the balance – An overview of mind-body therapies in pediatric oncology. Complementary Therapies in Medicine, 21(S1), S20–S25. https://doi.org/10.1016/j.ctim.2012.02.001
Karst, J. S., Hoag, J. A., Chan, S. F., Schmidt, D. J., Anderson, L. J., Englebert, N. E., et al. (2018). Assessment of end-of-treatment transition needs for pediatric cancer and hematopoietic stem cell transplant patients and their families. Pediatric Blood & Cancer, 65(8), e27109. https://doi.org/10.1002/pbc.27109
Kaye, E. C., Friebert, S., & Baker, J. N. (2016). Early integration of palliative care for children with high-risk cancer and their families. Pediatric Blood & Cancer, 63(4), 593–597. https://doi.org/10.1002/pbc.25848
Kaye, E. C., Weaver, M. S., DeWitt, L. H., Byers, E., Stevens, S. E., Lukowski, J., et al. (2021). The impact of specialty palliative care in pediatric oncology: A systematic review. Journal of Pain and Symptom Management, 61(5), 1060–1079. https://doi.org/10.1016/j.jpainsymman.2020.12.003
Kazak, A. E. (2006). Pediatric Psychosocial Preventative Health Model (PPPHM): Research, practice and collaboration in pediatric family systems medicine. Families, Systems & Health, 24(4), 381–395. https://doi.org/10.1037/1091-7527.24.4.381
Kazak, A. E., Alderfer, M. A., Streisand, R., Simms, S., Rourke, M. T., Barakat, L. P., et al. (2004). Treatment of posttraumatic stress symptoms in adolescent survivors of childhood cancer and their families: A randomized clinical trial. Journal of Family Psychology, 18(3), 493–504. https://doi.org/10.1037/0893-3200.18.3.493
Kazak, A. E., Kassam-Adams, N., Schneider, S., Zelikovsky, N., Alderfer, M. A., & Rourke, M. (2006). An integrative model of pediatric medical traumatic stress. Journal of Pediatric Psychology, 31(4), 343–355. https://doi.org/10.1093/jpepsy/jsj054
Kazak, A. E., Rourke, M. T., Alderfer, M. A., Pai, A., Reilly, A. F., & Meadows, A. T. (2007). Evidence-based assessment, intervention and psychosocial care in pediatric oncology: A blueprint for comprehensive services across treatment. Journal of Pediatric Psychology, 32(9), 1099–1110. https://doi.org/10.1093/jpepsy/jsm031
Kazak, A. E., Abrams, A. N., Banks, J., Christofferson, J., DiDonato, S., Grootenhuis, M. A., et al. (2015). Psychosocial assessment as a standard of care in pediatric cancer. Pediatric Blood & Cancer, 62(S5), S426–S459. https://doi.org/10.1002/pbc.25730
Kearney, J. A., Salley, C. G., & Muriel, A. C. (2015). Standards of psychosocial care for parents of children with cancer. Pediatric Blood & Cancer, 62(S5), S632–S683. https://doi.org/10.1002/pbc.25761
Kenney, A. E., Harman, J. L., Molnar, A. E., Jr., Jurbergs, N., & Willard, V. W. (2020). Early cognitive and adaptive functioning of clinically referred infants and toddlers with cancer. Journal of Clinical Psychology in Medical Settings., 27, 41–47. https://doi.org/10.1007/s10880-019-09619-1
Klassen, A. F., Klassen, R., Dix, D., Pritchard, S., Yanofsky, R., O’Donnell, M., et al. (2008). Impact of caring for a child with cancer on parents’ health-related quality of life. Journal of Clinical Oncology, 26(36), 5884–5889. https://doi.org/10.1200/JCO.2007.15.2835
Klosky, J. L., Howell, C. R., Li, Z., Foster, R. H., Mertens, A. C., Robison, L. L., et al. (2012). Risky health behavior among adolescents in the childhood cancer survivor study cohort. Journal of Pediatric Psychology, 37(6), 634–646. https://doi.org/10.1093/jpepsy/jss046
Knight, S. J., Conklin, H. M., Palmer, S., Schreiber, J., Armstrong, C. L., Wallace, D., et al. (2014). Working memory abilities among children treated for medulloblastoma: A longitudinal study of parent report and performance. Journal of Pediatric Psychology, 39(5), 501–511. https://doi.org/10.1093/jpepsy/jsu009
Krull, K. R., Hardy, K. K., Kahalley, L. S., Schuitema, I., & Kesler, S. R. (2018). Neurocognitive outcomes and interventions in long-term survivors of childhood cancer. Journal of Clinical Oncology, 36(21), 2181–2189. https://doi.org/10.1200/JCO.2017.76.4696
Kuppenheimer, W. G., & Brown, R. T. (2002). Painful procedures in pediatric cancer: A comparison of interventions. Clinical Psychology Review, 22(5), 753–786. https://doi.org/10.1016/S0272-7358(02)00105-8
Kupst, M. J., Natta, M. B., Richardson, C. C., Schulman, J. L., Lavigne, J. V., & Das, L. (1995). Family coping with pediatric leukemia: Ten years after treatment. Journal of Pediatric Psychology, 20(5), 601–617. https://doi.org/10.1093/jpepsy/20.5.601
Landier, W., Hughes, C. B., Calvillo, E. R., Anderson, N. L. R., Briseno-Toomey, D., Dominguez, L., et al. (2011). A grounded theory of the process of adherence to oral chemotherapy in Hispanic and Caucasian children and adolescents with acute lymphoblastic leukemia. Journal of Pediatric Oncology Nursing, 28(4), 203–223. https://doi.org/10.1177/1043454211409582
Lilleyman, J. S., & Lennard, L. (1996). Non-compliance with oral chemotherapy in childhood leukaemia. BMJ, 313(7067), 1219–2120. https://doi.org/10.1136/bmj.313.7067.1219
Lin, B., Gutman, T., Hanson, C. S., Ju, A., Manera, K., Butow, P., et al. (2020). Communication during childhood cancer: Systematic review of patient perspectives. Cancer, 126(4), 701–716. https://doi.org/10.1002/cncr.32637
Long, K. A., & Marsland, A. L. (2011). Family adjustment to childhood cancer: A systematic review. Clinical Child and Family Psychology Review, 14(1), 57–88. https://doi.org/10.1007/s10567-010-0082-z
Long, K. A., Alderfer, M. A., Ewing, L. J., & Marsland, A. L. (2013). The role of contextual threat in predicting self-reported distress among siblings of children with cancer. Journal of Clinical Psychology in Medical Settings, 20, 199–208. https://doi.org/10.1007/s10880-012-9321-4
Lotz, J. D., Jox, R. J., Borasio, G. D., & Fuhrer, M. (2013). Pediatric advance care planning: A systematic review. Pediatrics, 131(3), e873–e880. https://doi.org/10.1542/peds.2012-2394
Lövgren, M., Udo, C., Alvariza, A., & Kreicbergs, U. (2020). Much is left unspoken: Self-reports from families in pediatric oncology. Pediatric Blood & Cancer, 67(12), e28735. https://doi.org/10.1002/pbc.28735
Lown, E. A., Phillips, F., Schwartz, L. A., Rosenberg, A. R., & Jones, B. (2015). Psychosocial follow-up in survivorship as a standard of care in pediatric oncology. Pediatric Blood & Cancer, 62(S5), S514–S584. https://doi.org/10.1002/pbc.25783
Mack, J. W., Wolfe, J., Cook, E. F., Grier, H. E., Cleary, P. D., & Weeks, J. C. (2007). Hope and prognostic disclosure. Journal of Clinical Oncology, 25(35), 5636–5642. https://doi.org/10.1200/JCO.2007.12.6110
Mancini, A. F., Rosito, P., Canino, R., Calzetti, G., Di Caro, A., Salmi, S., et al. (1989). School-related behavior in children with cancer. Pediatric Hematology and Oncology, 6(2), 145–154. https://doi.org/10.3109/08880018909034280
Martiniuk, A., Silva, M., Amylon, M., & Barr, R. (2014). Camp programs for children with cancer and their families: Review of research progress over the past decade. Pediatric Blood & Cancer, 61(5), 778–787. https://doi.org/10.1002/pbc.24912
McDonnell, G. A., Salley, C. G., Barnett, M., et al. (2017). Anxiety among adolescent survivors of pediatric cancer. Journal of Adolescent Health, 61(4), 409–423. https://doi.org/10.1016/j.jadohealth.2017.04.004
McGrady, M. E., Williams, S. N., Davies, S. M., & Pai, A. L. (2014). Adherence to outpatient oral medication regimens in adolescent hematopoietic stem cell transplant recipients. European Journal of Oncology Nursing, 18(2), 140–144. https://doi.org/10.1016/j.ejon.2013.11.007
Mertens, A. C., & Gilleland Marchak, J. (2015). Mental health status of adolescent cancer survivors. Clinical Oncology in Adolescents and Young Adults, 5, 87–95. https://doi.org/10.2147/COAYA.S49174
Michel, G., Brinkman, T. M., Wakefield, C. E., & Grootenhuis, M. (2020). Psychological outcomes, health-related quality of life, and neurocognitive functioning in survivors of childhood cancer and their parents. Pediatric Clinics of North America, 67(6), 1103–1134. https://doi.org/10.1016/j.pcl.2020.07.005
Mulhern, R. K., Merchant, T. E., Gajjar, A., Reddick, W. E., & Kun, L. E. (2004). Late neurocognitive sequelae in survivors of brain tumours in childhood. Lancet Oncology, 5(7), 399–408. https://doi.org/10.1016/S1470-2045(04)01507-4
Nathan, P. C., Hayes-Lattin, B., Sisler, J. J., & Hudson, M. M. (2011). Critical issues in transition and survivorship for adolescents and young adults with cancers. Cancer, 117(S10), 2335–2341. https://doi.org/10.1002/cncr.26042
National Cancer Institute. (2021). Cancer in children and adolescents. https://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet. Accessed Apr 2021.
Noll, R. B., LeRoy, S., Bukowski, W. M., Rogosch, F. A., & Kulkarni, R. (1991). Peer relationships and adjustment in children with cancer. Journal of Pediatric Psychology, 16(3), 307–326. https://doi.org/10.1093/jpepsy/16.3.307
Olson, K., & Amari, A. (2015). Self-reported pain in adolescents with leukemia or a brain tumor: A systematic review. Cancer Nursing, 38(5), E43–E53. https://doi.org/10.1097/NCC.0000000000000214
Pai, A. L., Greenley, R. N., Lewandowski, A., Drotar, D., Youngstrom, E., & Peterson, C. C. (2007). A meta-analytic review of the influence of pediatric cancer on parent and family functioning. Journal of Family Psychology, 21(3), 407–415. https://doi.org/10.1037/08933200.21.3.407
Pai, A. L., Patiño-Fernández, A. M., McSherry, M., Beele, D., Alderfer, M. A., Reilly, A. T., et al. (2008). The Psychosocial Assessment Tool (PAT2.0): Psychometric properties of a screener for psychosocial distress in families of children newly diagnosed with cancer. Journal of Pediatric Psychology, 33(1), 50–62. https://doi.org/10.1093/jpepsy/jsm053
Parris, K. R., Harman, J. L., Jurbergs, N., Allen, J. M., & Canavera, K. E. (2020). Beyond clinical practice in pediatric psychology: Illustrative experiences in influencing practice changes, public opinion, and governmental policies. Psychological Services, 17(S1), 98–109. https://doi.org/10.1037/ser0000385
Patenaude, A. F., Pelletier, W., & Bingen, K. (2015). Communication, documentation, and training standards in pediatric psychosocial oncology. Pediatric Blood & Cancer, 62(S5), S870–S895. https://doi.org/10.1002/pbc.25725
Phipps, S., Jurbergs, N., & Long, A. (2009). Symptoms of post-traumatic stress in children with cancer: Does personality trump health status? Psycho-Oncology, 18(9), 992–1002. https://doi.org/10.1002/pon
Phipps, S., Klosky, J. L., Long, A., Hudson, M. M., Huang, Q., Zhang, H., et al. (2014). Posttraumatic stress and psychological growth in children with cancer: Has the traumatic impact of cancer been overestimated? Journal of Clinical Oncology, 32(7), 641–646. https://doi.org/10.1200/JCO.2013.49.8212
Pinto, B. M., & Trunzo, J. J. (2005). Health behaviors during and after a cancer diagnosis. Cancer, 104(S11), 2614–2623. https://doi.org/10.1002/cncr.21248
Poort, H., Zupanc, S. N., Leiter, R. E., Wright, A. A., & Lindvall, C. (2020). Documentation of palliative and end-of-life care process measures among young adults who died of cancer: A natural language processing approach. Journal of Adolescent and Young Adult Oncology, 9(1), 100–104. https://doi.org/10.1089/jayao.2019.0040
Prchal, A., & Landolt, M. A. (2009). Psychological interventions with siblings of pediatric cancer patients: A systematic review. Psycho-Oncology, 18(12), 1241–1251. https://doi.org/10.1002/pon.1565
Price, J., Kassam-Adams, N., Alderfer, M. A., Christofferson, J., & Kazak, A. E. (2016). Systematic review: A reevaluation and update of the integrative (trajectory) model of pediatric medical traumatic stress. Journal of Pediatric Psychology, 41(1), 86–97. https://doi.org/10.1093/jpepsy/jsv074
Reddick, W. E., & Conklin, H. M. (2014). Impact of acute lymphoblastic leukemia therapy on attention and working memory in children. Expert Review of Hematology, 3(6), 655–659. https://doi.org/10.1586/ehm.10.65
Reddick, W. E., Taghipour, D. J., Glass, J. O., Ashford, J. M., Xiong, X., Wu, S., et al. (2014). Prognostic factors that increase the risk for reduced white matter volumes and deficits in attention and learning for survivors of childhood cancers. Pediatric Blood & Cancer, 61(6), 1074–1079. https://doi.org/10.1002/pbc.24947
Robison, L. L., & Hudson, M. M. (2014). Survivors of childhood and adolescent cancer: Life-long risks and responsibilities. National Reviews Cancer, 14, 61–70. https://doi.org/10.1038/nrc3634
Rosenberg, A. R., Bradford, M. C., Junkins, C. C., Taylor, M., Zhou, C., Sherr, N., et al. (2019). Effect of the Promoting Resilience in Stress Management intervention for parents of children with cancer (PRISM-P): A randomized clinical trial. JAMA Network Open, 2(9), e1911578. https://doi.org/10.1001/jamanetworkopen.2019.11578
Runeson, I., Hallstrom, I., Elander, G., & Hermeren, G. (2002). Children’s participation in the decision-making process during hospitalization: An observational study. Nursing Ethics, 9(6), 583–598. https://doi.org/10.1191/0969733002ne553oa
Sahler, O. J., Fairclough, D. L., Phipps, S., Mulhern, R. K., Dolgin, M. J., Noll, R. B., et al. (2005). Using problem-solving skills training to reduce negative affectivity in mothers of children with newly diagnosed cancer: Report of a multisite randomized trial. Journal of Consulting and Clinical Psychology, 73(2), 272–283. https://doi.org/10.1037/0022-006X.73.2.272
Sahler, O. J., Dolgin, M. J., Phipps, S., Fairclough, D. L., Askins, M. A., Katz, E. R., et al. (2013). Specificity of problem-solving skills training in mothers of children newly diagnosed with cancer: Results of a multisite randomized clinical trial. Journal of Clinical Oncology, 31(10), 1329–1335. https://doi.org/10.1200/JCO.2011.39.1870
Salley, C. G., & Catarozoli, C. (2019). Cognitive behavioral therapy in pediatric oncology: Flexible application of core principles. In R. Friedberg & J. Paternostro (Eds.), Handbook of cognitive behavioral therapy for pediatric medical conditions. Autism and child psychopathology series (pp. 315–327). Springer.
Sansom-Daly, U. M., Wakefield, C. E., Patterson, P., Cohn, R. J., Rosenberg, A. R., Wiener, L., et al. (2020). End-of-life communication needs for adolescents and young adults with cancer: Recommendations for research and practice. Journal of Adolescent and Young Adult Oncology, 9(2), 157–165. https://doi.org/10.1089/jayao.2019.0084
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(3), 214–220. https://doi.org/10.1097/00043426200005000-00006
Schaefer, M. R., Spencer, S. K., Barnett, M., Reynolds, N. C., & Madan-Swain, A. (2019). Legacy artwork in pediatric oncology: The impact on bereaved caregivers’ psychological functioning and grief. Journal of Palliative Medicine, 22(9), 1124–1128. https://doi.org/10.1089/jpm.2018.0329
Schaefer, M. R., Wagoner, S. T., Young, M. E., Madan-Swain, A., Barnett, M., & Gray, W. N. (2020). Healing the hearts of bereaved parents: Impact of legacy artwork on grief in pediatric oncology. Journal of Pain and Symptom Management, 60(4), 790–800. https://doi.org/10.1016/j.jpainsymman.2020.04.018
Selove, R., Kroll, T., Coppes, M., & Cheng, Y. (2012). Psychosocial services in the first 30 days after diagnosis: Results of a web-based survey of Children’s Oncology Group (COG) member institutions. Pediatric Blood & Cancer, 58(3), 435–440. https://doi.org/10.1002/pbc.23235
Siegel, R. L., Miller, K. D., & Jemal, A. (2016). Cancer statistics, 2016. CA: A Cancer Journal for Clinicians, 66(1), 7–30. https://doi.org/10.3322/caac.21332
Siembida, E. J., & Bellizzi, K. M. (2015). The doctor-patient relationship in the adolescent cancer setting: A developmentally focused literature review. Journal of Adolescent and Young Adult Oncology, 4(3), 108–117. https://doi.org/10.1089/jayao.2015.0011
Smithson, E. F., Phillips, R., Harvey, D. W., & Morrall, M. C. (2013). The use of stimulant medication to improve neurocognitive and learning outcomes in children diagnosed with brain tumours: A systematic review. European Journal of Cancer, 49(14), 3029–3040. https://doi.org/10.1016/j.ejca.2013.05.023
Spinetta, J. J., Masera, G., Eden, T., Oppenheim, D., Martins, A. G., van Dongen-Melman, J., et al. (2002). Refusal, non-compliance, and abandonment of treatment in children and adolescents with cancer: A report of the SIOP Working Committee on Psychosocial Issues in pediatric Oncology. Medical and Pediatric Oncology, 38(2), 114–117. https://doi.org/10.1002/mpo.1283
Stam, H., Grootenhuis, M. A., & Last, B. F. (2001). Social and emotional adjustment in young survivors of childhood cancer. Supportive Care in Cancer, 9(7), 489–513. https://doi.org/10.1007/s005200100271
Steele, R. G., Dreyer, M. L., & Phipps, S. (2004). Patterns of maternal distress among children with cancer and their association with child emotional and somatic distress. Journal of Pediatric Psychology, 29(7), 507–517. https://doi.org/10.1093/jpepsy/jsh053
Steele, A. C., Mullins, L. L., Mullins, A. J., & Muriel, A. C. (2015). Psychosocial interventions and therapeutic support as a standard of care in pediatric oncology. Pediatric Blood & Cancer, 62(S5), S585–S618. https://doi.org/10.1002/pbc.25701
Stegenga, K., & Ward-Smith, P. (2008). The adolescent perspective on participation in treatment decision making: A pilot study. Journal of Pediatric Oncology Nursing, 25(2), 112–117. https://doi.org/10.1177/1043454208314515
Stehl, M. L., Kazak, A. E., Alderfer, M. A., Rodriguez, A., Hwang, W. T., Pai, A. L., et al. (2009). Conducting a randomized clinical trial of an psychological intervention for parents/caregivers of children with cancer shortly after diagnosis. Journal of Pediatric Psychology, 34(8), 803–816. https://doi.org/10.1093/jpepsy/jsn130
Stevens, B. J., Abbott, L. K., Yamada, J., Harrison, D., Stinson, J., Taddio, A., et al. (2011). Epidemiology and management of painful procedures in children in Canadian hospitals. CMAJ, 183(7), E403–E410. https://doi.org/10.1503/cmaj.101341
Taylor, J., Booth, A., Beresford, B., Phillips, B., Wright, K., & Fraser, L. (2020). Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review. Palliative Medicine, 34(6), 731–775. https://doi.org/10.1177/0269216320908490
Thompson, A. L., & Young-Saleme, T. K. (2015). Anticipatory guidance and psychoeducation as a standard of care in pediatric oncology. Pediatric Blood & Cancer, 62(S5), S684–S693. https://doi.org/10.1002/pbc.25721
Thompson, A. L., Christiansen, H. L., Elam, H., Hoag, J., Irwin, M. K., Pao, M., et al. (2015). Academic continuity and school reentry support as a standard of care in pediatric oncology. Pediatric Blood & Cancer, 62(S5), S805–S817. https://doi.org/10.1002/pbc.25760
Tiffenberg, J., Wood, E., Alonso, A., Tossuti, M., & Vincente, M. (2000). A randomized trial of ACINDES: A child centered training model for children with chronic illnesses (asthma and epilepsy). Journal of Urban Health, 77(2), 280–297. https://doi.org/10.1007/BF02390539
Tillery, R., Cohen, R., Berlin, K. S., Long, A., & Phipps, S. (2017). Youth’s adjustment to cancer: Examination of patterns of adjustment and the role of peer relations. Journal of Pediatric Psychology, 42(10), 1123–1132. https://doi.org/10.1093/jpepsy/jsx067
Tillery, R., Willard, V. W., Long, A., & Phipps, S. (2019). Posttraumatic stress in young children with cancer: Risk factors and comparison with healthy peers. Pediatric Blood & Cancer, 66(8), e27775. https://doi.org/10.1002/pbc.27775
Trask, P. C., Paterson, A. G., Trask, C. L., Bares, C. B., Birt, J., & Maan, C. (2003). Parent and adolescent adjustment to pediatric cancer: Associations with coping, social support, and family function. Journal of Pediatric Oncology Nursing, 20(1), 36–47. https://doi.org/10.1053/jpon.2003.5
Twycross, A., Parker, R., Williams, A., & Gibson, F. (2015). Cancer-related pain and pain management: Sources, prevalence, and the experiences of children and parents. Journal of Pediatric Oncology Nursing, 32(6), 369–384. https://doi.org/10.1177/1043454214563751
Ullrich, N. J., & Embry, L. (2012). Neurocognitive dysfunction in survivors of childhood brain tumors. Seminars in Pediatric Neurology, 19(1), 35–42. https://doi.org/10.1016/j.spen.2012.02.014
Van Schoors, M., Caes, L., Verhofstadt, L. L., Goubert, L., & Alderfer, M. A. (2015). Systematic review: Family resilience after pediatric cancer diagnosis. Journal of Pediatric Psychology, 40(9), 856–868. https://doi.org/10.1093/jpepsy/jsv055
Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0: Reliability and validity of the Pediatric Quality of Life Inventory Version 4.0 Generic core Scales in healthy and patient populations. Medical Care, 39(8), 800–812.
Wakefield, C. E., McLoone, J. K., Butow, P., Lenthen, K., & Cohn, R. J. (2011). Parental adjustment to the completion of their child’s cancer treatment. Pediatric Blood & Cancer, 56(4), 524–531. https://doi.org/10.1002/pbc.22725
Weaver, M. S., Heinze, K. E., Kelly, K. P., Wiener, L., Casey, R. L., Bell, C. J., et al. (2015). Palliative care as a standard of care in pediatric oncology. Pediatric Blood & Cancer, 62(S5), S829–S833. https://doi.org/10.1002/pbc.25695
Wiener, L., Kazak, A. E., Noll, R. B., Patenaude, A. F., & Kupst, M.J. (Eds.). (2015). Standards for psychosocial care for children with cancer and their families [Special issue]. Pediatric Blood & Cancer, 62(S5), S419–S895.
Wijnberg-Williams, B. J., Kamps, W. A., Klip, E. C., & Hoekstra-Weebers, J. E. (2006). Psychological adjustment of parents of pediatric cancer patients revisited: Five years later. Psycho-Oncology, 15(1), 1–8. https://doi.org/10.1002/pon.927
Willard, V. W., Cox, L. E., Russell, K. M., Kenney, A., Jurbergs, N., Molnar, A. E., Jr., et al. (2017). Cognitive and psychosocial functioning of preschool-age children with cancer. Journal of Developmental and Behavioral Pediatrics, 38(8), 638–645. https://doi.org/10.1097/DBP.0000000000000512
Winter, A. L., Conklin, H. M., Tyc, V. L., Stancel, H. H., Hinds, P. S., Hudson, M. M., et al. (2014). Executive function late effects in survivors of pediatric brain tumors and acute lymphoblastic leukemia. Journal of Clinical and Experimental Neuropsychology, 36(8), 818–830. https://doi.org/10.1080/13803395.2014.943695
World Health Organization. (2020). Palliative Care. https://www.who.int/news-room/fact-sheets/detail/palliative-care. Accessed 2 Apr 2021.
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Parris, K.R., Allen, J.M., Jurbergs, N. (2023). Pediatric Cancer. In: Matson, J.L. (eds) Handbook of Clinical Child Psychology. Autism and Child Psychopathology Series. Springer, Cham. https://doi.org/10.1007/978-3-031-24926-6_34
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