Advertisement

Easing Social Distress in Pediatric Cancer

  • Wendy PelletierEmail author
  • Ilaria Ripamonti
  • Kira Bona
Chapter
Part of the Pediatric Oncology book series (PEDIATRICO)

Abstract

Three domains of parental social distress across the pediatric cancer care trajectory are the focus of this chapter: employment, financial hardship, and social supports. Prevalence of social distress and potential disparities in the delivery of high-quality palliative care are discussed. Literature review, expert opinion, clinical pearls, and case vignettes are utilized to highlight elements within each domain that can be targeted for intervention. Concrete recommendations for incorporation of these domains into pediatric cancer care are provided.

References

  1. Alam R, Barrera M, D'Agostino N, Nicholas DB, Schneiderman G (2012) Bereavement experiences of mothers and fathers over time after the death of a child due to cancer. Death Stud 36:1–22CrossRefPubMedGoogle Scholar
  2. American Cancer Society (2012) Cancer facts & figures 2012. American Cancer Society, Atlanta. Available at: http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-031941.pdf . Accessed 3 April 2012
  3. American Academy of Pediatrics (2016) Poverty and Child Health in the United States. Pediatrics 137(4):e20160339Google Scholar
  4. Barr R, Furlong W, Horsman J, Feeny D, Torrance G, Weitzman S (1996) The monetary costs of childhood cancer to the families of patients. Int J Oncol 8:933–940PubMedGoogle Scholar
  5. Beaune L, Leavens A, Muskat B et al (2014) Poverty and pediatric palliative care: what can we do. J Soc Work End-of-Life Palliat Care 10:170–185CrossRefGoogle Scholar
  6. Bennett Murphy LM, Flowers S, McNamara KA, Young-Saleme T (2008) Fathers of children with cancer: involvement, coping, and adjustment. J Pediatr Health Care 22:182–189CrossRefPubMedGoogle Scholar
  7. Bona K, Dussel V, Orellana L et al (2014) Economic impact of advanced pediatric cancer on families. J Pain Symptom Manage 47:594–603CrossRefPubMedGoogle Scholar
  8. Bona K, London WB, Guo D, Frank DA, Wolfe J (2016) Trajectory of material hardship and income poverty in families of children undergoing chemotherapy: a prospective cohort study. Pediatr Blood Cancer 63:105–111CrossRefPubMedGoogle Scholar
  9. Cadell S, Kennedy K, Hemsworth D (2012) Informing social work practice through research with parent caregivers of a child with a life-limiting illness. J Soc Work End-of-Life Palliat Care 8:356–381CrossRefGoogle Scholar
  10. Carter KB, Mandrell BN (2013) Development of a respite care program for caregivers of pediatric oncology patients and their siblings. J Pediatr Oncol Nurs 30:109–114CrossRefPubMedGoogle Scholar
  11. Champagne M, Mongeau S (2012) Effects of respite care services in a children’s hospice: the parents’ point of view. J Palliat Care 28:245–251PubMedGoogle Scholar
  12. Cohn RJ, Goodenough B, Foreman T, Suneson J (2003) Hidden financial costs in treatment for childhood cancer: an Australian study of lifestyle implications for families absorbing out-of-pocket expenses. J Pediatr Hematol Oncol 25:854–863CrossRefPubMedGoogle Scholar
  13. Creswell PD, Wisk LE, Litzelman K, Allchin A, Witt WP (2014) Parental depressive symptoms and childhood cancer: the importance of financial difficulties. Support Care Cancer 22:503–511CrossRefPubMedGoogle Scholar
  14. Dockerty JD, Skegg DC, Williams SM (2003) Economic effects of childhood cancer on families. J Paediatr Child Health 39:254–258CrossRefPubMedGoogle Scholar
  15. Dussel V, Bona K, Heath JA, Hilden JM, Weeks JC, Wolfe J (2011) Unmeasured costs of a child’s death: perceived financial burden, work disruptions, and economic coping strategies used by American and Australian families who lost children to cancer. J Clin Oncol 29:1007–1013CrossRefPubMedPubMedCentralGoogle Scholar
  16. Eiser C, Upton P (2007) Costs of caring for a child with cancer: a questionnaire survey. Child Care Health Dev 33:455–459CrossRefPubMedGoogle Scholar
  17. Feudtner C, Silveira MJ, Christakis DA (2002) Where do children with complex chronic conditions die? Patterns in Washington State, 1980–1998. Pediatrics 109:656–660CrossRefPubMedGoogle Scholar
  18. Fletcher PC (2010) My child has cancer: the costs of mothers’ experiences of having a child with pediatric cancer. Issues Compr Pediatr Nurs 33:164–184CrossRefPubMedGoogle Scholar
  19. Fluchel MN, Kirchhoff AC, Bodson J et al (2014) Geography and the burden of care in pediatric cancers. Pediatric Blood Cancer 61:1918–1924CrossRefPubMedPubMedCentralGoogle Scholar
  20. Garg A, Toy S, Tripodis Y, Silverstein M, Freeman E (2015) Addressing social determinants of health at well child care visits: a cluster RCT. Pediatrics 135:e296–e304CrossRefPubMedPubMedCentralGoogle Scholar
  21. van der Geest IM, Darlington AS, Streng IC, Michiels EM, Pieters R, van den Heuvel-Eibrink MM. Parents’ experiences of pediatric palliative care and the impact on long-term parental grief. J Pain Symptom Manage 2014;47:1043–1053.Google Scholar
  22. Gerhardt CA, Salley CG, Lehmann V (2016) The impact of pediatric pancer on the family. In Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care. Abrams AA, Muriel AC, Wiener L (Eds). Springer International Publishing, Switzerland, 143–155Google Scholar
  23. Gibbins J, Steinhardt K, Beinart H (2012) A systematic review of qualitative studies exploring the experience of parents whose child is diagnosed and treated for cancer. J Pediatr Oncol Nurs 29:253–271CrossRefPubMedGoogle Scholar
  24. Hager ER, Quigg AM, Black MM et al (2010) Development and validity of a 2-item screen to identify families at risk for food insecurity. Pediatrics 126:e26–e32CrossRefPubMedGoogle Scholar
  25. Heath JA, Lintuuran RM, Rigguto G, Tikotlian N, McCarthy M (2006) Childhood cancer: its impact and financial costs for Australian families. Pediatr Hematol Oncol 23:439–448CrossRefPubMedGoogle Scholar
  26. Hinds PS, Oakes LL, Hicks J et al (2009) “Trying to be a good parent” as defined by interviews with parents who made phase I, terminal care, and resuscitation decisions for their children. J Clin Oncol 27:5979–5985CrossRefPubMedPubMedCentralGoogle Scholar
  27. Hosoda T (2014) The impact of childhood cancer on family functioning: a review. Grad Stud J Psychol 15:18–30Google Scholar
  28. Howlader NN, Krapcho AM et al (2011) SEER cancer statistics review, 1975–2008. National Cancer Institute, Bethesda, MDGoogle Scholar
  29. Kars MC, Grypdonck MH, van Delden JJ (2011) Being a parent of a child with cancer throughout the end-of-life course. Oncol Nurs Forum 38:E260–E271CrossRefPubMedGoogle Scholar
  30. Kazak AE, Noll RB (2015) The integration of psychology in pediatric oncology research and practice: collaboration to improve care and outcomes for children and families. Am Psychol 70:146–158CrossRefPubMedGoogle Scholar
  31. Knapp CA, Madden VL, Curtis CM, Sloyer P, Shenkman EA (2010) Family support in pediatric palliative care: how are families impacted by their children’s illnesses. J Palliat Med 13:421–426CrossRefPubMedGoogle Scholar
  32. Konrad SC (2007) What parents of seriously ill children value: parent-to-parent connection and mentorship. Omega 55:117–130PubMedGoogle Scholar
  33. Lau S, Lu X, Balsamo L et al (2014) Family life events in the first year of acute lymphoblastic leukemia therapy: a children’s oncology group report. Pediatr Blood Cancer 61:2277–2284CrossRefPubMedPubMedCentralGoogle Scholar
  34. Lewis JM, DiGiacomo M, Currow DC, Davidson PM (2011) Dying in the margins: understanding palliative care and socioeconomic deprivation in the developed world. J Pain Symptom Manage 42:105–118CrossRefPubMedGoogle Scholar
  35. Limburg H, Shaw AK, McBride ML (2008) Impact of childhood cancer on parental employment and sources of income: a Canadian pilot study. Pediatr Blood Cancer 51:93–98CrossRefPubMedGoogle Scholar
  36. Ling J, Payne S, Connaire K, McCarron M (2016) Parental decision-making on utilisation of out-of-home respite in children’s palliative care: findings of qualitative case study research—a proposed new model. Child Care Health Dev 42:51–59CrossRefPubMedGoogle Scholar
  37. Linton JM, Feudtner C (2008) What accounts for differences or disparities in pediatric palliative and end-of-life care? A systematic review focusing on possible multilevel mechanisms. Pediatrics 122:574–582CrossRefPubMedGoogle Scholar
  38. Lou HL, Mu PF, Wong TT, Mao HC (2015) A retrospective study of mothers’ perspectives of the lived experience of anticipatory loss of a child from a terminal brain tumor. Cancer Nurs 38:298–304CrossRefPubMedGoogle Scholar
  39. Macartney S (2011) Child poverty in the United States 2009 and 2010: selected race groups and Hispanic origin. American Community Survey Briefs. US Census Bureau. Available at http://www.census.gov/prod/2011pubs/acsbr10-05.pdf
  40. Meyer EC, Ritholz MD, Burns JP, Truog RD (2006) Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations. Pediatrics 117:649–657CrossRefPubMedGoogle Scholar
  41. Monterosso L, Kristjanson LJ, Phillips MB (2009) The supportive and palliative care needs of Australian families of children who die from cancer. Palliat Med 23:526–536CrossRefPubMedGoogle Scholar
  42. Morrison RS, Wallenstein S, Natale DK, Senzel RS, Huang LL (2000) “We don’t carry that”—failure of pharmacies in predominantly nonwhite neighborhoods to stock opioid analgesics. N Engl J Med 342:1023–1026CrossRefPubMedGoogle Scholar
  43. Neufeld SM, Query B, Drummond JE (2001) Respite care users who have children with chronic conditions: are they getting a break. J Pediatr Nurs 16:234–244CrossRefPubMedGoogle Scholar
  44. Nicholas DB, Beaune L, Barrera M, Blumberg J, Belletrutti M (2016) Examining the experiences of fathers of children with a life-limiting illness. J Soc Work End-of-Life Palliat Care 12:126–144CrossRefGoogle Scholar
  45. O’Donnell EH, Eddy KT, Rauch PK (2013) Parenting with chronic and life-threatening illness: a parent guidance model. In: Heru AM (ed) Working with families in medical settings: a multidisciplinary guide for psychiatrists and other health professionals. Routledge/Taylor & Francis Group, New York, NY, pp 130–147Google Scholar
  46. Okada H, Maru M, Maeda R, Iwasaki F, Nagasawa M, Takahashi M (2015) Impact of childhood cancer on maternal employment in Japan. Cancer Nurs 38:23–30CrossRefPubMedGoogle Scholar
  47. Pelletier W, Bona K (2015) Assessment of financial burden as a standard of care in pediatric oncology. Pediatric Blood Cancer 62(Suppl 5):S619–S631CrossRefPubMedGoogle Scholar
  48. Price J, Jordan J, Prior L, Parkes J (2011) Living through the death of a child: a qualitative study of bereaved parents’ experiences. Int J Nurs Stud 48:1384–1392CrossRefPubMedGoogle Scholar
  49. Pui CH, Pei D, Pappo AS et al (2012) Treatment outcomes in black and white children with cancer: results from the SEER database and St Jude Children’s Research Hospital, 1992 through 2007. J Clin Oncol 30:2005–2012CrossRefPubMedPubMedCentralGoogle Scholar
  50. Robert R, Zhukovsky DS, Mauricio R, Gilmore K, Morrison S, Palos GR (2012) Bereaved parents’ perspectives on pediatric palliative care. J Soc Work End-of-Life Palliat Care 8:316–338CrossRefGoogle Scholar
  51. Rosenberg AR, Dussel V, Kang T et al (2013a) Psychological distress in parents of children with advanced cancer. JAMA Pediatr 167:537–543CrossRefPubMedPubMedCentralGoogle Scholar
  52. Rosenberg AR, Baker KS, Syrjala KL, Back AL, Wolfe J (2013b) Promoting resilience among parents and caregivers of children with cancer. J Palliat Med 16:645–652CrossRefPubMedPubMedCentralGoogle Scholar
  53. Rosenberg-Yunger ZR, Granek L, Sung L et al (2013) Single-parent caregivers of children with cancer: factors assisting with caregiving strains. J Pediatr Oncol Nurs 30:45–55CrossRefPubMedGoogle Scholar
  54. Schweitzer R, Griffiths M, Yates P (2012) Parental experience of childhood cancer using Interpretative phenomenological analysis. Psychol Health 27:704–720PubMedGoogle Scholar
  55. Syse A, Larsen IK, Tretli S (2011) Does cancer in a child affect parents’ employment and earnings? A population-based study. Cancer Epidemiol 35:298–305CrossRefPubMedGoogle Scholar
  56. Tsimicalis A, Stevens B, Ungar WJ et al (2012) A prospective study to determine the costs incurred by families of children newly diagnosed with cancer in Ontario. Psycho-Oncology 21:1113–1123CrossRefPubMedGoogle Scholar
  57. Tsimicalis A, Stevens B, Ungar WJ et al (2013) A mixed method approach to describe the out-of-pocket expenses incurred by families of children with cancer. Pediatr Blood Cancer 60:438–445CrossRefPubMedGoogle Scholar
  58. Vollenbroich R, Duroux A, Grasser M, Brandstatter M, Borasio GD, Fuhrer M (2012) Effectiveness of a pediatric palliative home care team as experienced by parents and health care professionals. J Palliat Med 15:294–300PubMedGoogle Scholar
  59. Wakefield CE, McLoone JK, Evans NT, Ellis SJ, Cohn RJ (2014) It’s more than dollars and cents: the impact of childhood cancer on parents’ occupational and financial health. J Psychosoc Oncol 32:602–621CrossRefPubMedGoogle Scholar
  60. Ward E, DeSantis C, Robbins A, Kohler B, Jemal A (2014) Childhood and adolescent cancer statistics, 2014. CA Cancer J Clin 64:83–103CrossRefPubMedGoogle Scholar
  61. Ware J, Raval H (2007) A qualitative investigation of fathers’ experiences of looking after a child with a life-limiting illness, in process and in retrospect. Clin child Psychol Psychiatry 12:549–565CrossRefPubMedGoogle Scholar
  62. Warner EL, Kirchhoff AC, Nam GE, Fluchel M (2014) Financial burden of pediatric cancer for patients and their families. J Oncol Pract 11(1):12–18CrossRefPubMedPubMedCentralGoogle Scholar
  63. Whiting M (2013) Impact, meaning and need for help and support: the experience of parents caring for children with disabilities, life-limiting/life-threatening illness or technology dependence. J Child Health Care 17:92–108CrossRefPubMedGoogle Scholar
  64. Wiener L, McConnell DG, Latella L, Ludi E (2013) Cultural and religious considerations in pediatric palliative care. Palliat Support Care 11:47–67CrossRefPubMedGoogle Scholar
  65. Wiener L, Viola A, Kearney J et al (2016) Impact of caregiving for a child with cancer on parental health behaviors, relationship quality, and spiritual faith: do lone parents fare worse. J Pediatr Oncol Nurs 33:378–386Google Scholar
  66. Williams PD, Williams KA, Williams AR (2014) Parental caregiving of children with cancer and family impact, economic burden: nursing perspectives. Issues Compr Pediatr Nurs 37:39–60CrossRefPubMedGoogle Scholar
  67. Wolfe J, Klar N, Grier HE et al (2000a) Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care. JAMA 284:2469–2475CrossRefPubMedGoogle Scholar
  68. Wolfe J, Grier HE, Klar N et al (2000b) Symptoms and suffering at the end of life in children with cancer. N Engl J Med 342:326–333CrossRefPubMedGoogle Scholar

Copyright information

© Springer International Publishing AG 2018

Authors and Affiliations

  • Wendy Pelletier
    • 1
    Email author
  • Ilaria Ripamonti
    • 2
  • Kira Bona
    • 3
    • 4
    • 5
    • 6
  1. 1.Pediatric Hematology/Oncology/Transplant ProgramAlberta Children’s HospitalCalgaryCanada
  2. 2.Pediatric Onco-Hematology, Blood & Marrow Transplant ProgramUniversity of Milano-Bicocca, Monza’s Hospital San Gerardo/Fondazione MBBMMonzaItaly
  3. 3.Department of MedicineBoston Children’s HospitalBostonUSA
  4. 4.Department of Pediatric Oncology and Division of Population SciencesDana-Farber Cancer InstituteBostonUSA
  5. 5.Harvard Medical SchoolBostonUSA
  6. 6.Center for Outcomes and Population ResearchDana-Farber Cancer InstituteBostonUSA

Personalised recommendations