Skip to main content

Advertisement

Log in

The Critical Role of Parents in Pediatric Cancer-Related Pain Management: a Review and Call to Action

  • Palliative Medicine (A Jatoi, Section Editor)
  • Published:
Current Oncology Reports Aims and scope Submit manuscript

Abstract

Purpose of Review

Even with optimized medical management, pain remains an inevitable part of pediatric cancer care. The most effective interventions for nonpharmacologic pain management within pediatric psychology include parent skills training. This review specifically explored the role of parents in cancer-related pain management with the goal of defining a set of evidence-based skills that could translate to improved pediatric cancer pain management.

Recent Findings

Pain is now widely understood to be both a sensory and emotional experience. As a result, within pediatric non-cancer pain management there is increasing application of the biopsychosocial model for pain management, inclusive of evidence-based psychological intervention. This review, specifically focusing on the role of parent training in cancer-related pain management, finds few interventions that systematically included parents. There is a need for continued evidence-based innovation and knowledge dissemination in this area of care.

Summary

This paper highlights a critical gap in translational science within pediatric cancer pain management, namely, that parents who have a child with cancer are not reliably gaining access to well-established, evidence-based psychological skills training that can help to mitigate pain and pain-related stress. Based on the literature, the authors provide recommendations for generating adaptable, evidence-informed interventions that support and empower parents to help their child with pain management through all phases of cancer treatment.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

References

Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance

  1. Siegel RL, Miller KD, Jemal A. Cancer statistics, 2019. CA Cancer J Clin. 2019;69(1):7–34.

    Google Scholar 

  2. Tutelman PR, Chambers CT, Stinson JN, et al. Pain in children with Cancer. Clin J Pain. 2018;34(3):198–206.

    PubMed  Google Scholar 

  3. Wolfe J, Orellana L, Ullrich C, et al. Symptoms and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST study. J Clin Oncol. 2015;33(17):1928.

    PubMed  PubMed Central  Google Scholar 

  4. Collins JJ, Byrnes ME, Dunkel IJ, Lapin J, Nadel T, Thaler HT, et al. The measurement of symptoms in children with cancer. J Pain Symptom Manag. 2000;19(5):363–77.

  5. Moody K, Meyer M, Mancuso CA, Charlson M, Robbins L. Exploring concerns of children with cancer. Support Care Cancer. 2006;14(9):960–6.

    PubMed  Google Scholar 

  6. Collins JJ, Devine TD, Dick GS, Johnson EA, Kilham HA, Pinkerton CR, et al. The measurement of symptoms in young children with cancer: the validation of the memorial symptom assessment scale in children aged 7–12. J Pain Symptom Manag. 2002;23(1):10–6.

  7. Alberts NM, Gagnon MM, Stinson JN. Chronic pain in survivors of childhood cancer: a developmental model of pain across the cancer trajectory. Pain. 2018;159(10):1916–27.

    PubMed  Google Scholar 

  8. Jacob E, Hesselgrave J, Sambuco G, Hockenberry M. Variations in pain, sleep, and activity during hospitalization in children with cancer. J Pediatr Oncol Nurs. 2007;24(4):208–19.

    PubMed  Google Scholar 

  9. • Bai J, Harper FWK, Penner LA, Swanson K, Santacroce SJ. Parents’ verbal and nonverbal caring behaviors and child distress during Cancer-related port access procedures: a time-window sequential analysis. In: Oncol Nurs Forum. Vol 44. NIH public access; 2017:675. This observational study found that children were significantly less likely to display distress following a caring interaction with their parent than at any other time during a port procedure as part of cancer treatment.

  10. Shepherd EJW, Woodgate RL. Cancer survivorship in children and young adults: a concept analysis. J Pediatr Oncol Nurs. 2010;27(2):109–18.

    PubMed  Google Scholar 

  11. Harper FWK, Peterson AM, Albrecht TL, Taub JW, Phipps S, Penner LA. Posttraumatic stress symptoms in parents of pediatric cancer patients: A mediational analysis. J Trauma Stress Disord Treat. 2014;3(4).

  12. Kandula T, Park SB, Cohn RJ, Krishnan AV, Farrar MA. Pediatric chemotherapy induced peripheral neuropathy: a systematic review of current knowledge. Cancer Treat Rev. 2016;50:118–28.

    CAS  PubMed  Google Scholar 

  13. Karlson C, Alberts NM, Liu W, et al. Chronic pain and disability in long-term survivors of childhood cancer: a report from the childhood cancer survivor study (CCSS). 2018.

  14. Eccleston C, Fisher E, Law E, Bartlett J, Palermo TM. Psychological interventions for parents of children and adolescents with chronic illness. Cochrane Database Syst Rev 2015;(4).

  15. Ameringer S, Serlin RC, Hughes SH, Frierdich SA, Ward S. Concerns about pain management among adolescents with cancer: developing the adolescent barriers questionnaire. J Pediatr Oncol Nurs. 2006;23(4):220–32.

    PubMed  Google Scholar 

  16. Klopfenstein KJ, Young-Saleme T. Your role in the spectrum of adolescent cancer: diagnosis through treatment to care at life’s end. Contemp Pediatr. 2002;19(8):105.

    Google Scholar 

  17. Kyngäs H, Mikkonen R, Nousiainen E, Rytilahti M, Seppänen P, Vaattovaara R, et al. Coping with the onset of cancer: coping strategies and resources of young people with cancer. Eur J Cancer Care (Engl). 2001;10(1):6–11.

  18. van Dijk M, Tibboel D. Update on pain assessment in sick neonates and infants. Pediatr Clin. 2012;59(5):1167–81.

    Google Scholar 

  19. Stone AA, Shiffman S, Schwartz JE, Broderick JE, Hufford MR. Patient compliance with paper and electronic diaries. Control Clin Trials. 2003;24(2):182–99.

    PubMed  Google Scholar 

  20. Stone AA, Broderick JE. Real-time data collection for pain: appraisal and current status. Pain Med. 2007;8:S85–93.

    PubMed  Google Scholar 

  21. Anderson KO. Assessment tools for the evaluation of pain in the oncology patient. Curr Pain Headache Rep. 2007;11(4):259–64.

    PubMed  Google Scholar 

  22. Palermo TM. Assessment of chronic pain in children: current status and emerging topics. Pain Res Manag. 2009;14(1):21–6.

    PubMed  PubMed Central  Google Scholar 

  23. Stinson JN, Kavanagh T, Yamada J, Gill N, Stevens B. Systematic review of the psychometric properties, interpretability and feasibility of self-report pain intensity measures for use in clinical trials in children and adolescents. Pain. 2006;125(1–2):143–57.

    PubMed  Google Scholar 

  24. •• Loeffen EAH, Kremer LCM, van de Wetering MD, et al. Reducing pain in children with cancer: methodology for the development of a clinical practice guideline. Pediatr Blood Cancer. 2019;66(6):e27698. https://doi.org/10.1002/pbc.27698A team of multidisciplinary healthcare professionals and patient representatives systematically reviewed the literature on pediatric pain management in oncology. They concluded that there are no standard guidelines for managing pediatric cancer-related pain.

    Article  PubMed  Google Scholar 

  25. Kaye EC, Friebert S, Baker JN. Early integration of palliative care for children with high-risk cancer and their families. Pediatr Blood Cancer. 2016;63(4):593–7.

    PubMed  Google Scholar 

  26. •• Plummer K, McCarthy M, McKenzie I, Newall F, Manias E. Pain assessment and management in paediatric oncology: a cross-sectional audit. J Clin Nurs. 2017;26(19–20):2995–3006. https://doi.org/10.1111/jocn.13643This two month audit of pain management practices in a pediatric oncology inpatient setting found that medical treatment for pain was common, opioids were used in the majority of pain interventions, and non-pharmacological interventions were uncommon.

    Article  PubMed  Google Scholar 

  27. Jibb LA, Nathan PC, Stevens BJ, Seto E, Cafazzo JA, Stephens N, et al. Psychological and physical interventions for the management of cancer-related pain in pediatric and Young adult patients: an integrative review. Oncol Nurs Forum. 2015;42(6):E339–57. https://doi.org/10.1188/15.ONF.E339-E357.

  28. Adams D, Dagenais S, Clifford T, et al. Complementary and alternative medicine use by pediatric specialty outpatients. Pediatrics. 2013;131(2):225–32.

    PubMed  Google Scholar 

  29. Odell S, Logan DE. Pediatric pain management: the multidisciplinary approach. J Pain Res. 2013;6:785.

    PubMed  PubMed Central  Google Scholar 

  30. Eccleston C, Crombez G, Scotford A, Clinch J, Connell H. Adolescent chronic pain: patterns and predictors of emotional distress in adolescents with chronic pain and their parents. Pain. 2004;108(3):221–9.

    PubMed  Google Scholar 

  31. Claar RL, Simons LE, Logan DE. Parental response to children’s pain: the moderating impact of children’s emotional distress on symptoms and disability. Pain. 2008;138(1):172–9.

    PubMed  Google Scholar 

  32. Kendall PC. Guiding theory for therapy with children and adolescents. Child Adolesc Ther Cogn Proced 1991;2.

  33. Degotardi PJ, Klass ES, Rosenberg BS, Fox DG, Gallelli KA, Gottlieb BS. Development and evaluation of a cognitive-behavioral intervention for juvenile fibromyalgia. J Pediatr Psychol. 2005;31(7):714–23.

    PubMed  Google Scholar 

  34. Sieberg CB, Williams S, Simons LE. Do parent protective responses mediate the relation between parent distress and child functional disability among children with chronic pain? J Pediatr Psychol. 2011;36(9):1043–51.

    PubMed  Google Scholar 

  35. Langer SL, Romano JM, Levy RL, Walker LS, Whitehead WE. Catastrophizing and parental response to child symptom complaints. Child Health Care. 2009;38(3):169–84.

    PubMed  PubMed Central  Google Scholar 

  36. Levy RL, Langer SL, Walker LS, Romano JM, Christie DL, Youssef N, et al. Cognitive-behavioral therapy for children with functional abdominal pain and their parents decreases pain and other symptoms. Am J Gastroenterol. 2010;105(4):946–56.

  37. Law EF, Fisher E, Fales J, Noel M, Eccleston C. Systematic review and meta-analysis of parent and family-based interventions for children and adolescents with chronic medical conditions. J Pediatr Psychol. 2014;39(8):866–86.

    PubMed  PubMed Central  Google Scholar 

  38. Lewandowski AS, Palermo TM, Stinson J, Handley S, Chambers CT. Systematic review of family functioning in families of children and adolescents with chronic pain. J Pain. 2010;11(11):1027–38.

    PubMed  PubMed Central  Google Scholar 

  39. • Noel M, Rabbitts JA, Fales J, Chorney J, Palermo TM. The influence of pain memories on children’s and adolescents’ post-surgical pain experience: A longitudinal dyadic analysis. Health Psychol. 2017;36(10):987 To examine the role of children's and parents' memories of pain post-surgery, this study assessed pain catastrophizing at baseline and one month and five months post-surgery. The study found that children's memories were strong predictors of subsequent pain and ,therefore, may influence surgical recovery and the development of persistent pain.

    PubMed  PubMed Central  Google Scholar 

  40. Noel M, Chambers CT, McGrath PJ, Klein RM, Stewart SH. The influence of children’s pain memories on subsequent pain experience. Pain®. 2012;153(8):1563–72.

    Google Scholar 

  41. Chen E, Zeltzer LK, Craske MG, Katz ER. Children’s memories for painful cancer treatment procedures: implications for distress. Child Dev. 2000;71(4):933–47.

    CAS  PubMed  Google Scholar 

  42. Noel M, Chambers CT, Petter M, McGrath PJ, Klein RM, Stewart SH. Pain is not over when the needle ends: a review and preliminary model of acute pain memory development in childhood. Pain Manag. 2012;2(5):487–97.

    PubMed  Google Scholar 

  43. •• Fischer S, Vinall J, Pavlova M, et al. Role of anxiety in young children’s pain memory development after surgery. Pain. 2019;160(4):965–72 Children undergoing a tonsillectomy were asked about their pain intensity and pain-related fear three days and one month post-surgery and parents reported their state and train anxiety before the surgery. The study found higher parental trait anxiety and higher post-surgical pain intensity predicted later pain-related fear.

    PubMed  Google Scholar 

  44. Noel M, Pavlova M, Lund T, Jordan A, Chorney J, Rasic N, et al. The role of narrative in the development of children’s pain memories: influences of father–and mother–child reminiscing on children’s recall of pain. Pain. 2019;160(8):1866–75.

  45. Noel M, Pavlova M, Vinall J, et al. The sociolinguistic context of pain memory development in Young children. J Pain. 2018;19(3):S1.

    Google Scholar 

  46. Pavlova M, Graham SA, Jordan A, Chorney J, Vinall J, Rasic N, et al. Socialization of pain memories: parent-child reminiscing about past painful and sad events. J Pediatr Psychol. 2019;44(6):679–91.

  47. Cleveland ES, Reese E. Maternal structure and autonomy support in conversations about the past: contributions to children’s autobiographical memory. Dev Psychol. 2005;41(2):376.

    PubMed  Google Scholar 

  48. Noel M, Rabbitts JA, Tai GG, Palermo TM. Remembering pain after surgery: a longitudinal examination of the role of pain catastrophizing in children’s and parents’ recall. Pain. 2015;156(5):800–8.

    PubMed  PubMed Central  Google Scholar 

  49. Feinstein AB, Sturgeon JA, Bhandari RP, Yoon IA, Ross AC, Huestis SE, et al. Risk and resilience in pediatric pain. Clin J Pain. 2018;34(12):1096–105.

  50. Vervoort T, Huguet A, Verhoeven K, Goubert L. Mothers’ and fathers’ responses to their child’s pain moderate the relationship between the child’s pain catastrophizing and disability. PAIN®. 2011;152(4):786–93.

  51. Rabbitts JA, Fisher E, Rosenbloom BN, Palermo TM. Prevalence and predictors of chronic postsurgical pain in children: a systematic review and meta-analysis. J Pain. 2017;18(6):605–14.

    PubMed  PubMed Central  Google Scholar 

  52. Flury M, Caflisch U, Ullmann-Bremi A, Spichiger E. Experiences of parents with caring for their child after a cancer diagnosis. J Pediatr Oncol Nurs. 2011;28(3):143–53.

    PubMed  Google Scholar 

  53. Forgeron PA, Finley GA, Arnaout M. Pediatric pain prevalence and parents’ attitudes at a cancer hospital in Jordan. J Pain Symptom Manag. 2006;31(5):440–8.

    Google Scholar 

  54. Harper FWK, Albrecht TL, Trentacosta CJ, Taub JW, Phipps S, Penner LA. Understanding differences in the long-term psychosocial adjustment of pediatric cancer patients and their parents: an individual differences resources model. Transl Behav Med. 2019;9(3):514–22.

    PubMed  Google Scholar 

  55. Hedström M, Haglund K, Skolin I, Von Essen L. Distressing events for children and adolescents with cancer: child, parent, and nurse perceptions. J Pediatr Oncol Nurs. 2003;20(3):120–32.

    PubMed  Google Scholar 

  56. Ljungman G, Kreuger A, Gordh T, Berg T, Sörensen S, Rawal N. Treatment of pain in pediatric oncology: a Swedish nationwide survey. Pain. 1996;68(2–3):385–94.

    CAS  PubMed  Google Scholar 

  57. Walco GA, Sterling CM, Conte PM, Engel RG. Empirically supported treatments in pediatric psychology: disease-related pain. J Pediatr Psychol. 1999;24(2):155–67.

    CAS  PubMed  Google Scholar 

  58. Barrera M. Brief clinical report: procedural pain and anxiety management with mother and sibling as co-therapists. J Pediatr Psychol. 2000;25(2):117–21.

    CAS  PubMed  Google Scholar 

  59. Rabbitts JA, Groenewald CB, Tai GG, Palermo TM. Presurgical psychosocial predictors of acute postsurgical pain and quality of life in children undergoing major surgery. J Pain. 2015;16(3):226–34.

    PubMed  Google Scholar 

  60. Pagé MG, Campbell F, Isaac L, Stinson J, Katz J. Parental risk factors for the development of pediatric acute and chronic postsurgical pain: a longitudinal study. J Pain Res. 2013;6:727.

    PubMed  PubMed Central  Google Scholar 

  61. Hendershot E, Murphy C, Doyle S, Van-Clieaf J, Lowry J, Honeyford L. Outpatient chemotherapy administration: decreasing wait times for patients and families. J Pediatr Oncol Nurs. 2005;22(1):31–7.

    PubMed  Google Scholar 

  62. Fortier MA, Wahi A, Maurer EL, Tan ET, Sender LS, Kain ZN. Attitudes regarding analgesic use and pain expression in parents of children with cancer. J Pediatr Hematol Oncol. 2012;34(4):257–62.

    CAS  PubMed  Google Scholar 

  63. Link CJ, Fortier MA. The relationship between parent trait anxiety and parent-reported pain, solicitous behaviors, and quality of life impairment in children with cancer. J Pediatr Hematol Oncol. 2016;38(1):58–62.

    PubMed  Google Scholar 

  64. Fortier MA, Sender LS, Kain ZN. Management of pediatric oncology pain in the home setting: the next frontier. J Pediatr Hematol Oncol. 2011;33(4):249–50.

    PubMed  Google Scholar 

  65. Twycross A, Parker R, Williams A, Gibson F. Cancer-related pain and pain management: sources, prevalence, and the experiences of children and parents. J Pediatr Oncol Nurs. 2015;32(6):369–84.

    PubMed  Google Scholar 

  66. •• Boztepe H, Ay A, Akyuz C. Maternal pain management at home in children with cancer: a Turkish sample. J Pediatr Nurs. 2019. https://doi.org/10.1016/j.pedn.2019.08.007This cross-sectional study of mothers caring for children with cancer at home found that mothers are not trained to appropriately assess their child's pain and hold misconceptions about analgesics and non-pharmacological methods of pain management.

  67. • Chung WW, Agbayani C-JG, Martinez A, et al. Improving Children’s cancer pain management in the home setting: Development and formative evaluation of a web-based program for parents. Comput Biol Med. 2018;101:146–52. https://doi.org/10.1016/j.compbiomed.2018.08.014This study describes the development and evaluation of a mobile health tool, Cancer-Tailored Intervention for Pain and Symptoms (C-TIPS), for parents managing their child's cancer-related pain at home.

    Article  PubMed  Google Scholar 

  68. Brown ML, Rojas E, Gouda S. A Mind-Body Approach to Pediatric Pain Management. Child (Basel, Switzerland). 2017;4(6). doi:https://doi.org/10.3390/children4060050

  69. Kaye EC, Snaman JM, Baker JN. Pediatric palliative oncology: bridging silos of care through an embedded model. J Clin Oncol. 2017;35(24):2740–4.

    PubMed  Google Scholar 

  70. Brandelli YN, Chambers CT, Tutelman PR, Stinson JN, Huber AM, Wilson JP. Parent pain cognitions and treatment adherence in juvenile idiopathic arthritis. J Pediatr Psychol. 2019;44(9):1111–9.

    PubMed  Google Scholar 

  71. Cordts KMP, Stone AL, Beveridge JK, Wilson AC, Noel M. The (parental) whole is greater than the sum of its parts: a multifactorial model of parent factors in pediatric chronic pain. J Pain 2019.

  72. Levine DR, Mandrell BN, Sykes A, Pritchard M, Gibson D, Symons HJ, et al. Patients’ and parents’ needs, attitudes, and perceptions about early palliative care integration in pediatric oncology. JAMA Oncol. 2017;3(9):1214–20.

  73. Fischer S, Vinall J, Pavlova M, et al. Predictors of postoperative pain trajectories in adolescent idiopathic scoliosis. Pain. 2017;18(3):605–14.

    Google Scholar 

  74. Reinfjell T, Zeltzer L. A systematic review of self-reported pain in childhood cancer survivors. Acta Paediatr. 2019.

  75. Holley AL, Wilson AC, Palermo TM. Predictors of the transition from acute to persistent musculoskeletal pain in children and adolescents: a prospective study. Pain. 2017;158(5):794–801.

    PubMed  PubMed Central  Google Scholar 

  76. Coakley R, Wihak T, Kossowsky J, Iversen C, Donado C. The comfort ability pain management workshop: A preliminary, nonrandomized investigation of a brief, cognitive, biobehavioral, and parent training intervention for pediatric chronic pain. J Pediatr Psychol. 2017;43(3):252–65 This study evaluated the feasibility and outcomes of a one-day parent training intervention for adolescents with chronic pain. Results suggest that parents have reduced catastrophizing and over protective parenting practices within one week post-training and that these gains are maintained through the 3-month follow up.

    Google Scholar 

  77. Palermo TM, Dudeney J, Santanelli JP, Carletti A, Zempsky WT. Feasibility and acceptability of internet-delivered cognitive behavioral therapy for chronic pain in adolescents with sickle cell disease and their parents. J Pediatr Hematol Oncol. 2018;40(2):122–7. https://doi.org/10.1097/MPH.0000000000001018.

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Rachael Coakley.

Ethics declarations

Conflict of Interest

The authors declare they have no conflict of interest.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

Additional information

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

This article is part of the Topical Collection on Palliative Medicine

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Uhl, K., Burns, M., Hale, A. et al. The Critical Role of Parents in Pediatric Cancer-Related Pain Management: a Review and Call to Action. Curr Oncol Rep 22, 37 (2020). https://doi.org/10.1007/s11912-020-0899-7

Download citation

  • Published:

  • DOI: https://doi.org/10.1007/s11912-020-0899-7

Keywords

Navigation