Skip to main content

Easing Existential Distress in Pediatric Cancer Care

  • Chapter
  • First Online:
Palliative Care in Pediatric Oncology

Part of the book series: Pediatric Oncology ((PEDIATRICO))

  • 1366 Accesses

Abstract

Children with serious illnesses may have special needs that are not strictly clinical in nature and that are not always easily discerned. The capacity to detect and respond to this type of need becomes an increasingly important focus in palliative care. Spiritual care falls within this sphere of interest, for both the child with an illness and their family. In the care of children with advanced cancer and other life-threatening illnesses, spiritual care providers partner with families as they navigate a life-threatening illness, offering empathy, spiritual companionship, and guidance in balancing personal beliefs, values, and medical decision-making.

This chapter will explore the history and study of spiritual care of children with life-threatening illnesses and their families and present practical approaches for spiritual screening and intervention, as well as mechanisms for enhancing the infrastructure within healthcare settings to promote exemplary spiritual care.

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

Access this chapter

Institutional subscriptions

References

  • Abrams AN, Hazen EP, Penson RT (2007) Psychosocial issues in adolescents with cancer. Cancer Treat Rev 33(7):622–630

    Article  PubMed  Google Scholar 

  • Anandrajah G, Hight E (2001) Spirituality and medical practice: using the HOPE questions as a practical tool for spiritual assessment in office practice. Am Fam Physician 63(1):81–88

    Google Scholar 

  • Astrow AB, Puchalski CM, Sulmasy DP (2001) Religion, spirituality, and health care: social, ethical, and practical considerations. Am J Med 110(4):283–287

    Article  CAS  PubMed  Google Scholar 

  • Bluebond-Langner M (2000) In the shadow of illness: parents and siblings of the chronically ill child. Princeton University Press, Princeton, NJ

    Google Scholar 

  • Boston P, Bruce A, Schreiber R (2011) Existential suffering in the palliative care setting: an integrated literature review. J Pain Symptom Manag 41(3):604–618

    Article  Google Scholar 

  • Bull A, Gillies M, Division Y (2007) Spiritual needs of children with complex healthcare needs in hospital. Paediatr Nurs 19(9):34–38

    Article  Google Scholar 

  • Cassel EJ (1982) The nature of suffering and the goals of medicine. N Engl J Med 306:639–645

    Article  CAS  PubMed  Google Scholar 

  • Cerra A, Fitzpatrick JJ (2008) Can in-service education help prepare nurses for spiritual care? J Christ Nurs 25(4):204–209

    Article  PubMed  Google Scholar 

  • Champagne E (2008) Living and dying: a window on (Christian) children’s spirituality. Int J Child Spirituality 13(3):253–263

    Article  Google Scholar 

  • Contro N, Larson J, Scofield S, Sourkes B, Cohen H (2002) Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med 156(1):14–19

    Article  PubMed  Google Scholar 

  • Feudtner C, Haney J, Dimmers MA (2003) Spiritual care needs of hospitalized children and their families: a national survey of pastoral care providers' perceptions. Pediatrics 111(1):e67–e72. https://doi.org/10.1542/peds.111.1.e67

    Article  PubMed  Google Scholar 

  • Fowler JW, Dell ML (2006) Stages of faith from infancy through adolescence: reflections on three decades of faith development theory. In: The handbook of spiritual development in childhood and adolescence, pp 34–45

    Chapter  Google Scholar 

  • Frankl V (1992) Man’s search for meaning: an introduction to logotherapy, 4th edn. Beacon Press, Boston, MA

    Google Scholar 

  • Gaab EM, Owens GR, MacLeod RD (2014) Siblings caring for and about pediatric palliative care patients. J Palliat Med 17(1):62–67

    Article  PubMed  Google Scholar 

  • Haase JE, Kintner EK, Monahan PO, Robb SL (2014) The resilience in illness model (rim) part 1: exploratory evaluation in adolescents and young adults with cancer. Cancer Nurs 37(3):E1–E12

    Article  PubMed  PubMed Central  Google Scholar 

  • Hendricks-Ferguson V (2006) Relationships of age and gender to hope and spiritual well-being among adolescents with cancer. J Pediatr Oncol Nurs 23(4):189–199

    Article  PubMed  Google Scholar 

  • Hexem KR, Mollen CJ, Carroll K, Lanctot DA, Feudtner C (2011) How parents of children receiving pediatric palliative care use religion, spirituality, or life philosophy in tough times. J Palliat Med 14(1):39–44

    Article  PubMed  PubMed Central  Google Scholar 

  • Humphrey LM, Hill DL, Carroll KW, Rourke M, Kang TI, Feudtner C (2015) Psychological well-being and family environment of siblings of children with life threatening illness. J Palliat Med 18(11):981–984

    Article  PubMed  Google Scholar 

  • Hurwitz CA, Duncan J, Wolfe J (2004) Caring for the child with cancer at the close of life: “there are people who make it, and I'm hoping I'm one of them”. J Am Med Assoc 292(17):2141–2149

    Article  CAS  Google Scholar 

  • Joint Commission International (2011) Joint commission international accreditation standards for hospitals, 4th edn. Ringgold Inc, Portland, OR

    Google Scholar 

  • Jones BL (2006) Caregivers of children with cancer. Hum Behav Soc Environ 14(1/2):221–239

    Google Scholar 

  • Jones BL (2012) The challenge of quality care for family caregivers in pediatric cancer care. Semin Oncol Nurs 28(4):213–220

    Article  PubMed  Google Scholar 

  • Jones B, Weisenfluh S (2003) Pediatric palliative and end-of-life care: developmental and spiritual issues of dying children. Smith Coll Stud Soc Work 73(3):423–443

    Article  Google Scholar 

  • Kamper R, Van Cleve L, Savedra M (2010) Children with advanced cancer: responses to a spiritual quality of life interview. J Spec Pediatr Nurs 15(4):301–306

    Article  PubMed  PubMed Central  Google Scholar 

  • Knapp C, Madden V, Wang H, Curtis C, Sloyer P, Shenkman E (2011) Spirituality of parents of children in palliative care. J Palliat Med 14(4):437–443

    Article  PubMed  Google Scholar 

  • Koenig HG (2012) Role of the chaplain on the medical-surgical team. Assoc Operating Room Nurses J 96(3):330–332

    Article  Google Scholar 

  • Kylmä J, Juvakka T (2007) Hope in parents of adolescents with cancer: factors endangering and engendering parental hope. Eur J Oncol Nurs 11(3):262–271

    Article  PubMed  Google Scholar 

  • Mack JW, Wolfe J, Cook EF, Grier HE, Cleary PD, Weeks JC (2009) Peace of mind and sense of purpose as core existential issues among parents of children with cancer. Arch Pediatr Adolesc Med 163(6):519–524

    Article  PubMed  Google Scholar 

  • Maugans TA (1996) The SPIRITual history. Arch Fam Med 5(1):11–16

    Article  CAS  PubMed  Google Scholar 

  • McEvoy M (2000) An added dimension to the pediatric health maintenance visit: the spiritual history. J Pediatr Health Care 14(5):216–220

    Article  CAS  PubMed  Google Scholar 

  • McSherry M, Kehoe K, Carroll JM, Kang TI, Rourke MT (2007) Psychosocial and spiritual needs of children living with a life-threatening illness. Pediatr Clin North Am 54(5):609–629. https://doi.org/10.1016/j.pcl.2007.08.002

    Article  PubMed  Google Scholar 

  • Meert KL, Thurston CS, Briller SH (2005) The spiritual needs of parents at the time of their child's death in the pediatric intensive care unit and during bereavement: a qualitative study. Pediatr Crit Care Med 6(4):420

    Article  PubMed  Google Scholar 

  • Meireles CB, Maia LC, Miná VAL, Novais MDSMC, Peixoto JAC, Cartaxo MABS, de Lima JMF, dos Santos FAV, de Matos Cassiano JJ, Pinheiro PG, Neto MLR (2015) Influence of spirituality in pediatric cancer management: a systematic review. Int Arch Med 8. https://doi.org/10.3823/1634

  • Miller WR, Thoresen CE (2003) Spirituality, religion, and health: an emerging research field. Am Psychol 58(1):24–35. https://doi.org/10.1037/0003-066X.58.1.24

    Article  PubMed  Google Scholar 

  • Mishel MH (1988) Uncertainty in illness. Image J Nurs Sch 20(4):225–232

    Article  CAS  PubMed  Google Scholar 

  • Murray JS (2002) A qualitative exploration of psychosocial support for siblings of children with cancer. J Pediatr Nurs 17(5):327–337

    Article  PubMed  Google Scholar 

  • Nolbris M, Enskär K, Hellström A (2007) Experience of siblings of children treated for cancer. Eur J Oncol Nurs 11(2):106–112. https://doi.org/10.1016/j.ejon.2006.10.002

    Article  PubMed  Google Scholar 

  • Peterman AH, Fitchett G, Brady MJ, Hernandez L, Cella D (2002) Measuring spiritual well-being in people with cancer: the functional assessment of chronic illness therapy—Spiritual Well-being Scale (FACIT-Sp). Ann Behav Med 24(1):49–58

    Article  PubMed  Google Scholar 

  • Petersen CL (2014) Spiritual care of the child with cancer at the end of life: a concept analysis. J Adv Nurs 70(6):1243–1253

    Article  PubMed  Google Scholar 

  • Proserpio T, Piccinelli C, Clerici CA (2011) Pastoral care in hospitals: a literature review. Tumori 97(5):666–671

    PubMed  Google Scholar 

  • Proserpio T, Ferrari A, Lo VS, Massimino M, Clerici CA, Veneroni L, Bresciani C, Casali PG, Ferrari M, Bossi P, Galmozzi G, Pierantozzi A, Licitra L, Marceglia S, Mariani L (2014) Hope in cancer patients: the relational domain as a crucial factor. Tumori 101(4):447–454

    Google Scholar 

  • Puchalski C (2006) Spiritual assessment in clinical practice. Psychiatr Ann 36(3):150–155

    Google Scholar 

  • Puchalski C, Romer AL (2000) Taking a spiritual history allows clinicians to understand patients more fully. J Palliat Med 3(1):129–137. https://doi.org/10.1089/jpm.2000.3.129

    Article  CAS  PubMed  Google Scholar 

  • Puchalski C, Ferrell B, Virani R, Otis-Green S, Baird P, Bull J, Chochinov H, Handzo G, Nelson-Becker H, Prince-Paul M, Pugliese K, Sulmasy D (2009) Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference. J Palliat Med 12(10):885–904

    Google Scholar 

  • Purow B, Alisanski S, Putnam G, Ruderman M (2011) Spirituality and pediatric cancer. South Med J 104(4):299–302. https://doi.org/10.1097/SMJ.0b013e3182083f40

    Article  PubMed  Google Scholar 

  • Robinson MR, Thiel MM, Backus MM, Meyer EC (2006) Matters of spirituality at the end of life in the pediatric intensive care unit. Pediatrics 118(3):e719–e729

    Article  PubMed  Google Scholar 

  • Schneider MA, Mannell RC (2006) Beacon in the storm: an exploration of the spirituality and faith of parents whose children have cancer. Issues Compr Pediatr Nurs 29(1):3–24

    Article  PubMed  Google Scholar 

  • Sloper P (2000) Experiences and support needs of siblings of children with cancer. Health Social Care Community 8(5):298–306

    Article  Google Scholar 

  • Steele AC, Kaal J, Thompson AL, Barrera M, Compas BE, Davies B, Fairclough DL, Foster TL, Gilmer MJ, Hogan N, Vannatta K, Gerhardt CA (2013) Bereaved parents and siblings offer advice to healthcare providers and researchers. J Pediatr Hematol Oncol 35(4):253

    Google Scholar 

  • Wasner M, Longaker C, Fegg MJ, Borasio GD (2005) Effects of spiritual care training for palliative care professionals. Palliat Med 19(2):99–104

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Jennifer Currin-McCulloch .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2018 Springer International Publishing AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Currin-McCulloch, J., Proserpio, T., Podda, M., Clerici, C.A. (2018). Easing Existential Distress in Pediatric Cancer Care. 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_9

Download citation

  • DOI: https://doi.org/10.1007/978-3-319-61391-8_9

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-61390-1

  • Online ISBN: 978-3-319-61391-8

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics