Abstract
When a child is diagnosed with cancer, the lives of an entire family are changed forever. In an instant, the vision of your perfectly healthy and happy family and the future you envisioned gets wiped away and is replaced with foreign medical jargon, treatment protocols, and great fear and anxiety about the survival of your child. Providing psychosocial care for the child and the family along the cancer continuum, from the time of diagnosis through survivorship or end-of-life care, is vital to achieving optimal health and wellness. This chapter highlights the importance of psychosocial care for childhood cancer families and the perspectives of two parents who have lived the cancer journey as they cared for their son Mattie, who courageously battled osteosarcoma. As a result of their experiences, they share their conversations and approaches with psychosocial providers and also discuss their vision that inspired the national project that is underway to develop standards of psychosocial care for childhood cancer.
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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):1–22
Alderfer M, Kazak AE (2006) Family issues when a child is on treatment for cancer. In: Brown RT (ed) Comprehensive handbook of childhood cancer and sickle cell disease. Oxford University Press, New York, pp 53–75
Björk M, Wiebe T, Hallström I (2005) Striving to survive: families’ lived experiences when a child is diagnosed with cancer. J Pediatr Oncol Nurs 22:265–275
Bryant R (2003) Managing side effects of childhood cancer treatment. J Pediatr Nurs 18:113–125
CureSearch for Children’s Cancer (2014) Childhood cancer statistics. Retrieved from http://www.curesearch.org/Childhood-Cancer-Statistics/
Holm KE, Patterson JM, Gurney JG (2003) Parental involvement and family-centered care in the diagnostic and treatment phases of childhood cancer: results from a qualitative study. J Pediatr Oncol Nurs 20(6):301–313
Institute of Medicine of the National Academies (2008) Cancer care for the whole patient: meeting psychosocial health needs. National Academies Press, Washington, DC
Jaaniste T, Hayes B, von Baeyer CL (2007) Providing children with Information about forthcoming medical procedures: a review and synthesis. Clin Psychol Sci Pract 14:124–143
Jacobsen PB, Holland JC, Steensma DP (2012) Caring for the whole patient: the science of psychosocial care. J Clin Oncol 30(11):1151–1153
Jedlicka-Köhler I, Götz M, Eichler I (1996) Parents’ recollection of the initial communication of the diagnosis of cystic fibrosis. Pediatrics 97:204–209
Kazak A (2005) Evidence-based interventions for survivors of childhood cancer and their families. J Pediatr Psychol 30(1):29–39
Kreichbergs U, Valdimarsdottir U, Onelov E, Henter JI, Steineck G (2004) Talking about death with children who have severe malignant disease. N Engl J Med 351:1175–1186
Li J, Precht DH, Mortensen PB, Olsen J (2003) Mortality in parents after death of a child in Denmark: a nationwide follow-up study. Lancet 361:363–367
Masera G, Spinetta JJ, Jankovic M, Ablin AR, Buchwall I, Van Dongen-Melman J, Eden T, Epelman C, Green DM, Kosmidis HV, Yoheved S, Martins AG, Mor W, Oppenheim D, Petrilli AS, Schuler D, Topf R, Wilbur JR, Chesler MA (1998) Guidelines for a therapeutic alliance between families and staff: a report of the SIOP working committee on psychosocial issues in pediatric oncology. Med Pediatr Oncol 30:183–186
Mattie Miracle Cancer Foundation (2014) Retrieved from http://www.mattiemiracle.com/
McGrath P, Kail-Buckley S, Philips E (2007) Learning a new language. Informational issues for parents of children treated for acute lymphoblastic leukaemia. Aust Asian J Cancer 6:205–212
Noll RB, Patel SK, Embry L, Hardy KK, Pelletier W, Annett RD, Patenaude A, Lown EA, Sands SA, Barakat LP (2013) Children’s Oncology Group’s 2013 blueprint for research: behavioral science. Pediatr Blood Cancer 60:1048–1054
Pai ALH, Greenley RN, Lewandowski A, Drotar D, Youngstrom E, Peterson CC (2007) A meta-analytic review of the influence of pediatric cancer on parent and family functioning. J Fam Psychol 21(3):407–415
Varni JW, Katz ER, Colegrove R, Dolgin M (1996) Family functioning predictors of adjustment in children with newly diagnosed cancer: a prospective analysis. J Child Psychol Psychiatr 37:321–328
Wallander JL, Varni JW, Babani L, Banis HT, Wilcox KT (1992) Family resources as resistance factors for psychological maladjustment in chronically ill and handicapped children. In: Roberts MC, Wallander JC (eds) Family issues in pediatric psychology. Lawrence Erlbaum Associates, Hillsdale, pp 129–145
Wiener L, Viola A, Koretski J, Perper ED, Patenaude AF (2015) Pediatric psycho-oncology care: standards, guidelines, and consensus reports. Psychooncology. 24(2):204-11doi:10.1002/pon.3589
Wing DG, Clance PR, Burge-Callaway K, Armistead L (2001) Understanding gender differences in bereavement following the death of an infant: implications for treatment. Psychotherapy 38:60–73
World Health Organization (2014) Cancer Fact Sheet. Retrieved from http://www.who.int/mediacentre/factsheets/fs297/en/
Znoj HJ, Keller D (2002) Mourning parents: considering safeguards and their relationship to health. Death Stud 26:545–565
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Sardi-Brown, V.A., Brown, P.J. (2016). Parents’ Perspective on the Role of Psychosocial Care in Pediatric Oncology. In: Abrams, A., Muriel, A., Wiener, L. (eds) Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care. Springer, Cham. https://doi.org/10.1007/978-3-319-21374-3_22
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DOI: https://doi.org/10.1007/978-3-319-21374-3_22
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