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Easing Social Distress in Pediatric Cancer

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Book cover Palliative Care in Pediatric Oncology

Part of the book series: Pediatric Oncology ((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.

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References

  • 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 36:1–22

    Article  PubMed  Google Scholar 

  • 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

  • American Academy of Pediatrics (2016) Poverty and Child Health in the United States. Pediatrics 137(4):e20160339

    Google Scholar 

  • 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 8:933–940

    CAS  PubMed  Google Scholar 

  • 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 10:170–185

    Article  Google Scholar 

  • Bennett Murphy LM, Flowers S, McNamara KA, Young-Saleme T (2008) Fathers of children with cancer: involvement, coping, and adjustment. J Pediatr Health Care 22:182–189

    Article  PubMed  Google Scholar 

  • Bona K, Dussel V, Orellana L et al (2014) Economic impact of advanced pediatric cancer on families. J Pain Symptom Manage 47:594–603

    Article  PubMed  Google Scholar 

  • 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 63:105–111

    Article  PubMed  Google Scholar 

  • 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 8:356–381

    Article  Google Scholar 

  • Carter KB, Mandrell BN (2013) Development of a respite care program for caregivers of pediatric oncology patients and their siblings. J Pediatr Oncol Nurs 30:109–114

    Article  PubMed  Google Scholar 

  • Champagne M, Mongeau S (2012) Effects of respite care services in a children’s hospice: the parents’ point of view. J Palliat Care 28:245–251

    PubMed  Google Scholar 

  • 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 25:854–863

    Article  PubMed  Google Scholar 

  • 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 22:503–511

    Article  PubMed  Google Scholar 

  • Dockerty JD, Skegg DC, Williams SM (2003) Economic effects of childhood cancer on families. J Paediatr Child Health 39:254–258

    Article  CAS  PubMed  Google Scholar 

  • 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 29:1007–1013

    Article  PubMed  PubMed Central  Google Scholar 

  • Eiser C, Upton P (2007) Costs of caring for a child with cancer: a questionnaire survey. Child Care Health Dev 33:455–459

    Article  CAS  PubMed  Google Scholar 

  • Feudtner C, Silveira MJ, Christakis DA (2002) Where do children with complex chronic conditions die? Patterns in Washington State, 1980–1998. Pediatrics 109:656–660

    Article  PubMed  Google Scholar 

  • Fletcher PC (2010) My child has cancer: the costs of mothers’ experiences of having a child with pediatric cancer. Issues Compr Pediatr Nurs 33:164–184

    Article  PubMed  Google Scholar 

  • Fluchel MN, Kirchhoff AC, Bodson J et al (2014) Geography and the burden of care in pediatric cancers. Pediatric Blood Cancer 61:1918–1924

    Article  PubMed  PubMed Central  Google Scholar 

  • 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–e304

    Article  PubMed  PubMed Central  Google Scholar 

  • 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 

  • 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, 143–155

    Google Scholar 

  • 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 29:253–271

    Article  PubMed  Google Scholar 

  • 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–e32

    Article  PubMed  Google Scholar 

  • Heath JA, Lintuuran RM, Rigguto G, Tikotlian N, McCarthy M (2006) Childhood cancer: its impact and financial costs for Australian families. Pediatr Hematol Oncol 23:439–448

    Article  PubMed  Google Scholar 

  • 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 27:5979–5985

    Article  PubMed  PubMed Central  Google Scholar 

  • Hosoda T (2014) The impact of childhood cancer on family functioning: a review. Grad Stud J Psychol 15:18–30

    Google Scholar 

  • Howlader NN, Krapcho AM et al (2011) SEER cancer statistics review, 1975–2008. National Cancer Institute, Bethesda, MD

    Google Scholar 

  • 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–E271

    Article  PubMed  Google Scholar 

  • 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 70:146–158

    Article  PubMed  Google Scholar 

  • 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 13:421–426

    Article  PubMed  Google Scholar 

  • Konrad SC (2007) What parents of seriously ill children value: parent-to-parent connection and mentorship. Omega 55:117–130

    PubMed  Google Scholar 

  • 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 61:2277–2284

    Article  PubMed  PubMed Central  Google Scholar 

  • 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 42:105–118

    Article  PubMed  Google Scholar 

  • 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 51:93–98

    Article  PubMed  Google Scholar 

  • 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 42:51–59

    Article  CAS  PubMed  Google Scholar 

  • 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 122:574–582

    Article  PubMed  Google Scholar 

  • 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 38:298–304

    Article  PubMed  Google Scholar 

  • 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

  • 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 117:649–657

    Article  PubMed  Google Scholar 

  • Monterosso L, Kristjanson LJ, Phillips MB (2009) The supportive and palliative care needs of Australian families of children who die from cancer. Palliat Med 23:526–536

    Article  CAS  PubMed  Google Scholar 

  • 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 342:1023–1026

    Article  CAS  PubMed  Google Scholar 

  • Neufeld SM, Query B, Drummond JE (2001) Respite care users who have children with chronic conditions: are they getting a break. J Pediatr Nurs 16:234–244

    Article  CAS  PubMed  Google Scholar 

  • 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 12:126–144

    Article  Google Scholar 

  • 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 130–147

    Google Scholar 

  • Okada H, Maru M, Maeda R, Iwasaki F, Nagasawa M, Takahashi M (2015) Impact of childhood cancer on maternal employment in Japan. Cancer Nurs 38:23–30

    Article  PubMed  Google Scholar 

  • Pelletier W, Bona K (2015) Assessment of financial burden as a standard of care in pediatric oncology. Pediatric Blood Cancer 62(Suppl 5):S619–S631

    Article  PubMed  Google Scholar 

  • 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 48:1384–1392

    Article  PubMed  Google Scholar 

  • 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 30:2005–2012

    Article  PubMed  PubMed Central  Google Scholar 

  • 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 8:316–338

    Article  Google Scholar 

  • Rosenberg AR, Dussel V, Kang T et al (2013a) Psychological distress in parents of children with advanced cancer. JAMA Pediatr 167:537–543

    Article  PubMed  PubMed Central  Google Scholar 

  • Rosenberg AR, Baker KS, Syrjala KL, Back AL, Wolfe J (2013b) Promoting resilience among parents and caregivers of children with cancer. J Palliat Med 16:645–652

    Article  PubMed  PubMed Central  Google Scholar 

  • 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 30:45–55

    Article  PubMed  Google Scholar 

  • Schweitzer R, Griffiths M, Yates P (2012) Parental experience of childhood cancer using Interpretative phenomenological analysis. Psychol Health 27:704–720

    PubMed  Google Scholar 

  • Syse A, Larsen IK, Tretli S (2011) Does cancer in a child affect parents’ employment and earnings? A population-based study. Cancer Epidemiol 35:298–305

    Article  PubMed  Google Scholar 

  • 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 21:1113–1123

    Article  PubMed  Google Scholar 

  • 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 60:438–445

    Article  PubMed  Google Scholar 

  • 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 15:294–300

    PubMed  Google Scholar 

  • 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 32:602–621

    Article  PubMed  Google Scholar 

  • Ward E, DeSantis C, Robbins A, Kohler B, Jemal A (2014) Childhood and adolescent cancer statistics, 2014. CA Cancer J Clin 64:83–103

    Article  PubMed  Google Scholar 

  • 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 12:549–565

    Article  PubMed  Google Scholar 

  • Warner EL, Kirchhoff AC, Nam GE, Fluchel M (2014) Financial burden of pediatric cancer for patients and their families. J Oncol Pract 11(1):12–18

    Article  PubMed  PubMed Central  Google Scholar 

  • 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 17:92–108

    Article  PubMed  Google Scholar 

  • Wiener L, McConnell DG, Latella L, Ludi E (2013) Cultural and religious considerations in pediatric palliative care. Palliat Support Care 11:47–67

    Article  PubMed  Google Scholar 

  • 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 33:378–386

    Google Scholar 

  • Williams PD, Williams KA, Williams AR (2014) Parental caregiving of children with cancer and family impact, economic burden: nursing perspectives. Issues Compr Pediatr Nurs 37:39–60

    Article  PubMed  Google Scholar 

  • 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 284:2469–2475

    Article  CAS  PubMed  Google Scholar 

  • 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 342:326–333

    Article  CAS  PubMed  Google Scholar 

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Author information

Authors and Affiliations

  1. Pediatric Hematology/Oncology/Transplant Program, Alberta Children’s Hospital, Calgary, AB, Canada

    Wendy Pelletier M.S.W., R.S.W.

  2. Pediatric Onco-Hematology, Blood & Marrow Transplant Program, University of Milano-Bicocca, Monza’s Hospital San Gerardo/Fondazione MBBM, Monza, Italy

    Ilaria Ripamonti B.S.W., R.S.W.

  3. Department of Medicine, Boston Children’s Hospital, Boston, MA, USA

    Kira Bona MD, M.P.H.

  4. Department of Pediatric Oncology and Division of Population Sciences, Dana-Farber Cancer Institute, Boston, MA, USA

    Kira Bona MD, M.P.H.

  5. Harvard Medical School, Boston, MA, USA

    Kira Bona MD, M.P.H.

  6. Center for Outcomes and Population Research, Dana-Farber Cancer Institute, Boston, MA, USA

    Kira Bona MD, M.P.H.

Authors
  1. Wendy Pelletier M.S.W., R.S.W.
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  2. Ilaria Ripamonti B.S.W., R.S.W.
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  3. Kira Bona MD, M.P.H.
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Corresponding author

Correspondence to Wendy Pelletier M.S.W., R.S.W. .

Editor information

Editors and Affiliations

  1. Department of Psychosocial Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA

    Joanne Wolfe

  2. School of Social Work, The University of Texas, Austin, Texas, USA

    Barbara L. Jones

  3. Department of Caring Sciences, Palliative Research Centre, Stockholm, Sweden

    Ulrika Kreicbergs

  4. Hospital san Gerardo, University of Milano, Monza, Italy

    Momcilo Jankovic

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Pelletier, W., Ripamonti, I., Bona, K. (2018). Easing Social Distress in Pediatric Cancer. In: Wolfe, J., Jones, B., Kreicbergs, U., Jankovic, M. (eds) Palliative Care in Pediatric Oncology. Pediatric Oncology. Springer, Cham. https://doi.org/10.1007/978-3-319-61391-8_10

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  • DOI: https://doi.org/10.1007/978-3-319-61391-8_10

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  • Publisher Name: Springer, Cham

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  • Online ISBN: 978-3-319-61391-8

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