Skip to main content
SpringerLink
Log in

Resilience in the Care of Children with Palliative Care Needs

  • Chapter
  • First Online:
Child and Adolescent Resilience Within Medical Contexts

Abstract

Pediatric palliative care is an interdisciplinary medical specialty addressing the complex needs of children with life-limiting illnesses, and their families. Its core concerns involve the treatment of troublesome symptoms and assisting families in medical decision-making and determining the goals of care. In addition to biomedical issues, pediatric palliative care teams attempt to attend to social, psychological, and spiritual aspects of the patient experience. Research directed at a mechanistic understanding of resilience in pediatric palliative care is burdened by conceptual and definitional difficulties, as well as the limitations in any effort to measure psychosocial outcomes in a population with high morbidity and mortality. Although research on resilience among these patients is limited, addressing suffering, supporting the role of parental goals and preferences and, when possible, supporting the child’s voice through the process of care, has important implications for the child’s resilience. These efforts in themselves may be understood as being motivated by the desire to promote and sustain resilience, as the child’s sense of intactness is supported and protected through “regoaling,” addressing suffering, and promoting meaningful, identity-enrich responses to the challenges of serious illness.

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

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 69.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 89.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 109.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Balkin, E. M., Wolfe, J., Ziniel, S. I., Lang, P., Thiagarajan, R., Dillis, S., … Blume, E. D. (2014). Physician and parent perceptions of prognosis and end-of-life experience in children with advanced heart disease. Journal of Palliative Medicine, 18(4):318–23. doi:10.1089/jpm.2014.0305.

    Google Scholar 

  • Barrera, M., Boyd-Pringle, L. A., Sumbler, K., & Saunders, F. (2000). Quality of life and behavioral adjustment after pediatric bone marrow transplantation. Bone Marrow Transplantation, 26(4), 427–435. doi:10.1038/sj.bmt.1702527.

    Article  PubMed  Google Scholar 

  • Berry, J. G., Hall, M., Hall, D. E., Kuo, D. Z., Cohen, E., Agrawal, R., … Neff, J. (2013). Inpatient growth and resource use in 28 children’s hospitals: A longitudinal, multi-institutional study. JAMA Pediatrics, 167(2), 170–177. doi:10.1001/jamapediatrics.2013.432.

    Google Scholar 

  • Carnevale, F. A., Alexander, E., Davis, M., Rennick, J., & Troini, R. (2006). Daily living with distress and enrichment: The moral experience of families with ventilator-assisted children at home. Pediatrics, 117(1), e48–e60. doi:10.1542/peds.2005-0789.

    Article  PubMed  Google Scholar 

  • Cassell, E. J. (1991). Recognizing suffering. The Hastings Center Report, 21(3), 24–31.

    Article  PubMed  Google Scholar 

  • Cassell, E. J. (2013). The nature of healing: The practice of modern medicine. New York, NY: Oxford University Press.

    Google Scholar 

  • Connor, K. M. (2006). Assessment of resilience in the aftermath of trauma. The Journal of Clinical Psychiatry, 67(Suppl 2), 46–49.

    PubMed  Google Scholar 

  • Cousins, L. A., Cohen, L. L., & Venable, C. (2014). Risk and resilience in pediatric chronic pain: Exploring the protective role of optimism. Journal of Pediatric Psychology, 40(9), 934–942. doi:10.1093/jpepsy/jsu094.

    Article  PubMed  Google Scholar 

  • Dinesen, S. J., & Greisen, G. (2001). Quality of life in young adults with very low birth weight. Archives of Disease in Childhood—Fetal and Neonatal Edition, 85(3), F165–F169.

    Article  PubMed  PubMed Central  Google Scholar 

  • Dussel, V., Bona, K., Heath, J. A., Hilden, J. M., Weeks, J. C., & 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. Journal of Clinical Oncology, 29(8), 1007–1013. doi:10.1200/JCO.2009.27.8960.

    Article  PubMed  PubMed Central  Google Scholar 

  • Fee, R. J., & Hinton, V. J. (2011). Resilience in children diagnosed with a chronic neuromuscular disorder. Journal of Developmental and Behavioral Pediatrics, 32(9), 644–650. doi:10.1097/DBP.0b013e318235d614.

    Article  PubMed  PubMed Central  Google Scholar 

  • Feudtner, C., Kang, T. I., Hexem, K. R., Friedrichsdorf, S. J., Osenga, K., Siden, H., … Wolfe, J. (2011). Pediatric palliative care patients: A prospective multicenter cohort study. Pediatrics, 127(6), 1094–1101. doi:10.1542/peds.2010-3225.

    Google Scholar 

  • Feudtner, C., Womer, J., Augustin, R., Remke, S., Wolfe, J., Friebert, S., & Weissman, D. (2013). Pediatric palliative care programs in children’s hospitals: A cross-sectional national survey. Pediatrics, 132(6), 1063–1070. doi:10.1542/peds.2013-1286.

    Google Scholar 

  • Folkman, S., & Greer, S. (2000). Promoting psychological well-being in the face of serious illness: When theory, research and practice inform each other. Psychooncology, 9(1), 11–19.

    Article  PubMed  Google Scholar 

  • Gayton, W. F., Friedman, S. B., Tavormina, J. F., & Tucker, F. (1977). Children with cystic fibrosis: I. Psychological test findings of patients, siblings, and parents. Pediatrics, 59(6), 888–894.

    PubMed  Google Scholar 

  • Harper, F. W., Goodlett, B. D., Trentacosta, C. J., Albrecht, T. L., Taub, J. W., Phipps, S., & Penner, L. A. (2014). Temperament, personality, and quality of life in pediatric cancer patients. Journal of Pediatric Psychology, 39(4), 459–468. doi:10.1093/jpepsy/jst141.

    Google Scholar 

  • Harris, T., Brown, G. W., & Bifulco, A. (1986). Loss of parent in childhood and adult psychiatric disorder: The role of lack of adequate parental care. Psychological Medicine, 16(3), 641–659.

    Article  PubMed  Google Scholar 

  • Hill, D. L., Miller, V., Walter, J. K., Carroll, K. W., Morrison, W. E., Munson, D. A., … Feudtner, C. (2014). Regoaling: A conceptual model of how parents of children with serious illness change medical care goals. BMC Palliative Care, 13(1), 9. doi:10.1186/1472-684X-13-9.

  • Himelstein, B. P., Hilden, J. M., Boldt, A. M., & Weissman, D. (2004). Pediatric palliative care. The New England Journal of Medicine, 350(17), 1752–1762. doi:10.1056/NEJMra030334.

    Article  PubMed  Google Scholar 

  • Jamieson, N., Fitzgerald, D., Singh-Grewal, D., Hanson, C. S., Craig, J. C., & Tong, A. (2014). Children’s experiences of cystic fibrosis: A systematic review of qualitative studies. Pediatrics, 133(6), e1683–e1697. doi:10.1542/peds.2014-0009.

    Article  PubMed  Google Scholar 

  • Kazak, A. E., & Barakat, L. P. (1997). Brief report: Parenting stress and quality of life during treatment for childhood leukemia predicts child and parent adjustment after treatment ends. Journal of Pediatric Psychology, 22(5), 749–758.

    Article  PubMed  Google Scholar 

  • Knapp, C. A., Madden, V. L., Curtis, C. M., Sloyer, P., & Shenkman, E. A. (2010). Family support in pediatric palliative care: How are families impacted by their children’s illnesses? Journal of Palliative Medicine, 13(4), 421–426. doi:10.1089/jpm.2009.0295.

    Article  PubMed  Google Scholar 

  • Kreicbergs, U., Valdimarsdottir, U., Onelov, E., Henter, J. I., & Steineck, G. (2004). Talking about death with children who have severe malignant disease. The New England Journal of Medicine, 351(12), 1175–1186. doi:10.1056/NEJMoa040366.

    Article  PubMed  Google Scholar 

  • 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. doi:10.1200/JCO.2007.12.6110.

    Article  PubMed  Google Scholar 

  • Mack, J. W., Wolfe, J., Cook, E. F., Grier, H. E., Cleary, P. D., & Weeks, J. C. (2009). Peace of mind and sense of purpose as core existential issues among parents of children with cancer. Archives of Pediatrics and Adolescent Medicine, 163(6), 519–524. doi:10.1001/archpediatrics.2009.57.

    Article  PubMed  Google Scholar 

  • Mancini, A. D., & Bonanno, G. A. (2009). Predictors and parameters of resilience to loss: Toward an individual differences model. Journal of Personality, 77(6), 1805–1832. doi:10.1111/j.1467-6494.2009.00601.x.

    Article  PubMed  PubMed Central  Google Scholar 

  • Min, J. A., Yoon, S., Lee, C. U., Chae, J. H., Lee, C., Song, K. Y., & Kim, T. S. (2013). Psychological resilience contributes to low emotional distress in cancer patients. Supportive Care in Cancer, 21(9), 2469–2476. doi:10.1007/s00520-013-1807-6.

    Google Scholar 

  • Molina, Y., Yi, J. C., Martinez-Gutierrez, J., Reding, K. W., Yi-Frazier, J. P., & Rosenberg, A. R. (2014). Resilience among patients across the cancer continuum: Diverse perspectives. Clinical Journal of Oncology Nursing, 18(1), 93–101. doi:10.1188/14.CJON.93-101.

    Article  PubMed  PubMed Central  Google Scholar 

  • Montagnino, B. A., & Mauricio, R. V. (2004). The child with a tracheostomy and gastrostomy: Parental stress and coping in the home—A pilot study. Pediatric Nursing, 30(5), 373–380. 401.

    PubMed  Google Scholar 

  • Patterson, J. M., Holm, K. E., & Gurney, J. G. (2004). The impact of childhood cancer on the family: A qualitative analysis of strains, resources, and coping behaviors. Psychooncology, 13(6), 390–407. doi:10.1002/pon.761.

    Article  PubMed  Google Scholar 

  • Payot, A., & Barrington, K. J. (2011). The quality of life of young children and infants with chronic medical problems: Review of the literature. Current Problems in Pediatric and Adolescent Health Care, 41(4), 91–101. doi:10.1016/j.cppeds.2010.10.008.

    Article  PubMed  Google Scholar 

  • Pritchard, M., Burghen, E. A., Gattuso, J. S., West, N. K., Gajjar, P., Srivastava, D. K., … Hinds, P. S. (2010). Factors that distinguish symptoms of most concern to parents from other symptoms of dying children. Journal of Pain and Symptom Management, 39(4), 627–636. doi:10.1016/j.jpainsymman.2009.08.012.

    Google Scholar 

  • Reid, D. T., & Renwick, R. M. (2001). Relating family stress to the psychosocial adjustment of adolescents with Duchenne muscular dystrophy. International Journal of Rehabilitation Research, 24, 89–93.

    Google Scholar 

  • Richardson, G. E. (2002). The metatheory of resilience and resiliency. Journal of Clinical Psychology, 58(3), 307–321.

    Article  PubMed  Google Scholar 

  • Rosenberg, A. R., Baker, K. S., Syrjala, K. L., Back, A. L., & Wolfe, J. (2013). Promoting resilience among parents and caregivers of children with cancer. Journal of Palliative Medicine, 16(6), 645–652. doi:10.1089/jpm.2012.0494.

    Article  PubMed  PubMed Central  Google Scholar 

  • Rosenberg, A. R., Starks, H., & Jones, B. (2014). “I know it when I see it.” The complexities of measuring resilience among parents of children with cancer. Support Care Cancer, 22(10), 2661–2668. doi:10.1007/s00520-014-2249-5.

    Article  PubMed  PubMed Central  Google Scholar 

  • Rosenberg, A. R., Wolfe, J., Bradford, M. C., Shaffer, M. L., Yi-Frazier, J. P., Curtis, J. R., … Baker, K. S. (2014). Resilience and psychosocial outcomes in parents of children with cancer. Pediatric Blood and Cancer, 61(3), 552–557. doi:10.1002/pbc.24854.

    Google Scholar 

  • Rutter, M. (2006). Implications of resilience concepts for scientific understanding. The Annals of the New York Academy of Sciences, 1094, 1–12. doi:10.1196/annals.1376.002.

    Article  PubMed  Google Scholar 

  • Rutter, M. (2012). Resilience as a dynamic concept. Development and Psychopathology, 24(2), 335–344. doi:10.1017/S0954579412000028.

    Article  PubMed  Google Scholar 

  • Stevens, M. M., Jones, P., & O’Riordan, E. (1996). Family responses when a child with cancer is in palliative care. Journal of Palliative Care, 12(3), 51–55.

    PubMed  Google Scholar 

  • Vannatta, K., Zeller, M., Noll, R. B., & Koontz, K. (1998). Social functioning of children surviving bone marrow transplantation. Journal of Pediatric Psychology, 23(3), 169–178.

    Article  PubMed  Google Scholar 

  • Wolfe, J., Grier, H. E., Klar, N., Levin, S. B., Ellenbogen, J. M., Salem-Schatz, S., … Weeks, J. C. (2000). Symptoms and suffering at the end of life in children with cancer. The New England Journal of Medicine, 342(5), 326–333. doi:10.1056/NEJM200002033420506.

    Google Scholar 

  • Wolfe, J., Hammel, J. F., Edwards, K. E., Duncan, J., Comeau, M., Breyer, J., … Weeks, J. C.. (2008). Easing of suffering in children with cancer at the end of life: Is care changing? Journal of Clinical Oncology, 26(10), 1717–1723. doi:10.1200/JCO.2007.14.0277.

    Google Scholar 

  • World Health Organization. (1998). Cancer pain relief and palliative care in children. Geneva, Switzerland: World Health Organization.

    Google Scholar 

  • Zelcer, S., Cataudella, D., Cairney, A. E., & Bannister, S. L. (2010). Palliative care of children with brain tumors: A parental perspective. Archives of Pediatrics and Adolescent Medicine, 164(3), 225–230. doi:10.1001/archpediatrics.2009.284.

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA

    Richard D. Goldstein M.D.

Authors
  1. Richard D. Goldstein M.D.
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Richard D. Goldstein M.D. .

Editor information

Editors and Affiliations

  1. Department of Applied Psychology and Human Development Joint Center for Bioethics, University of Toronto, Toronto, Ontario, Canada

    Carey DeMichelis

  2. Department of Applied Psychology and Human Development, University of Toronto, OISE, Toronto, Ontario, Canada

    Michel Ferrari

Rights and permissions

Reprints and permissions

Copyright information

© 2016 Springer International Publishing Switzerland

About this chapter

Cite this chapter

Goldstein, R.D. (2016). Resilience in the Care of Children with Palliative Care Needs. In: DeMichelis, C., Ferrari, M. (eds) Child and Adolescent Resilience Within Medical Contexts. Springer, Cham. https://doi.org/10.1007/978-3-319-32223-0_7

Download citation

Publish with us

Policies and ethics

Search

Navigation