Skip to main content
SpringerLink
Log in
Book cover

Sarcoma pp 351–381Cite as

Psychosocial Issues in Children with Cancer: The Role of Patient Advocacy and Its Impact on Care

  • Chapter
  • First Online:

Abstract

When a child is diagnosed with cancer, life as the family once knew it ceases to exist. Families are faced with their greatest fear. Childhood cancer is a family disease that impacts the psychological, social, and emotional health of the entire family system. Providing psychosocial care for the child and the family throughout the cancer trajectory, 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, discusses the role and strategies of patient advocacy with the impact parents can have on the effectiveness of medical care, and reviews the national project that is underway to develop and implement standards of psychosocial care for childhood cancer. The perspective of parents and psycho-oncology professionals is incorporated in this chapter, and together they give voice to Mattie’s courageous battle against osteosarcoma.

This is a preview of subscription content, 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   139.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD   179.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD   249.99
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

Learn about institutional subscriptions

References

  1. CureSearch for Children’s Cancer. Childhood cancer statistics. 2014. http://www.curesearch.org/Childhood-Cancer-Statistics/

  2. Mattie Miracle Cancer Foundation. 2014. https://www.mattiemiracle.com/

  3. Alderfer M, Kazak AE. Family issues when a child is on treatment for cancer. In: Brown RT, editor. Comprehensive handbook of childhood cancer and sickle cell disease. New York: Oxford; 2006. p. 53–75.

    Google Scholar 

  4. Cohen MS. Families coping with childhood chronic illness: a research review. Fam Syst Health. 1999;17:149–64.

    Article  Google Scholar 

  5. Overholser JC, Fritz GK. The impact of childhood cancer on the family. J Psychosoc Oncol. 1990;8:71–85.

    Article  Google Scholar 

  6. Varni JW, Katz ER, Colegrove R, Dolgin M. Family functioning predictors of adjustment in children with newly diagnosed cancer: a prospective analysis. J Child Psychol Psychiatry. 1996;37:321–8.

    Article  CAS  PubMed  Google Scholar 

  7. Wallander JL, Varni JW, Babani L, Banis HT, Wilcox KT. Family resources as resistance factors for psychological maladjustment in chronically ill and handicapped children. In: Roberts MC, Wallander JC, editors. Family issues in pediatric psychology. Hillsdale: Lawrence Erlbaum Associates; 1992. p. 129–45.

    Google Scholar 

  8. Holland J. History of psycho-oncology: overcoming attitudinal and conceptual barriers. Psychosom Med. 2002;64:206–21.

    Article  PubMed  Google Scholar 

  9. Patenaude AF, Kupst MJ. Psychosocial functioning in pediatric cancer. J Pediatr Psychol. 2005;30(1):9–27.

    Article  PubMed  Google Scholar 

  10. Spinetta JJ. The dying child’s awareness of death. Psychol Bull. 1974;81:256–60.

    Article  CAS  PubMed  Google Scholar 

  11. Waechter EH. Death anxiety in children with fatal illness. Unpublished doctoral dissertation. Stanford University, Palo Alto, California.

    Google Scholar 

  12. Patenaude AF, Kupst MJ. SIOP education book. International Society of Paediatric Oncology (pp. 133–137). 2010. http://www.siop-online.org/sites/default/files/SIOP%20Education%20Book%202010.pdf

  13. Institute of Medicine of the National Academies. Cancer care for the whole patient: meeting psychosocial health needs. Washington, DC: National Academies Press; 2008.

    Google Scholar 

  14. Jacobsen PB, Holland JC, Steensma DP. Caring for the whole patient: the science of psychosocial care. J Clin Oncol. 2012;30(11):1151–3.

    Article  PubMed  Google Scholar 

  15. Jaaniste T, Hayes B, von Baeyer CL. Providing children with information about forthcoming medical procedures: a review and synthesis. Clin Psychol Sci Pract. 2007;14:124–43.

    Article  Google Scholar 

  16. Kazak A. Evidence-based interventions for survivors of childhood cancer and their families. J Pediatr Psychol. 2005;30(1):29–39.

    Article  PubMed  Google Scholar 

  17. Powers S. Empirically supported treatments in pediatric psychology: procedure-related pain. J Pediatr Psychol. 1999;24:131–45.

    Article  CAS  PubMed  Google Scholar 

  18. American Psychiatric Association (APA). Diagnostic and statistical manual of mental disorders, text revision (DSM-IV-TR). 4th ed. Washington, DC: APA; 2000.

    Google Scholar 

  19. Spitzer RL, Kroenke K, Linzer M, Hahn SR, Williams JB, deGruy FV, Brody D, Davies M. Health-related quality of life in primary care patients with mental disorders. Results from the PRIME-MD 1000 study. JAMA. 1995;274(19):1511–7.

    Article  CAS  PubMed  Google Scholar 

  20. American Academy of Pediatrics. Guidelines for the pediatric cancer center and the role of such centers in diagnosis and treatment. Pediatrics. 1997;99:139–40.

    Article  Google Scholar 

  21. Kazak A. Comprehensive care for children with cancer and their families: a social ecological framework guiding research, practice, and policy. Child Serv. 2001;4(4):217–33.

    Article  Google Scholar 

  22. Askins MA, Moore BD. Psychosocial support of the pediatric cancer patient: lessons learned over the past 50 years. Curr Oncol Rep. 2008;10:469–76.

    Article  PubMed  Google Scholar 

  23. Rosenberg AR, Wolfe J. Palliative care for adolescents and young adults with cancer. Clin Oncol Adolesc Young Adults. 2013;3:41–8.

    Google Scholar 

  24. Institute of Medicine of the National Academies. When children die: improving palliative and end-of-life care for children and their families. 2003. http://iom.edu/Reports/2002/When-Children-Die-Improving-Palliative-and-End-of-Life-Care-for-Children-and-Their-Families.aspx

  25. Waldman E, Wolfe J. Palliative care for children with cancer. Nat Rev Clin Oncol. 2013;10(2):100–7.

    Article  PubMed  Google Scholar 

  26. Wein S, Pery S, Zer A. Role of palliative care in adolescent and young adult oncology. J Clin Oncol. 2010;28(32):4819–24.

    Article  PubMed  Google Scholar 

  27. 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. 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. 1998;30:183–6.

    Article  CAS  PubMed  Google Scholar 

  28. Holm KE, Patterson JM, Gurney JG. Parental involvement and family-centered care in the diagnostic and treatment phases of childhood cancer: results from a qualitative study. J Pediatr Oncol Nurs. 2003;20(6):301–13.

    Article  PubMed  Google Scholar 

  29. Goold SD, Lipkin M. The doctor-patient relationship. J Gen Intern Med. 1999;14(Suppl 1):S26–33.

    Article  PubMed Central  Google Scholar 

  30. Kupst MJ, Patenaude AF, Walco GA, Sterling C. Clinical trials in pediatric cancer: parental perceptions on informed consent. J Pediatr Hematol Oncol. 2003;25:787–90.

    Article  PubMed  Google Scholar 

  31. Wiener L, Alderfer M, Pao M. Psychiatric and psychosocial support for child and family. In: Pizzo PA, Poplack DG, editors. Principles and practice of pediatric oncology. 7th ed. Philadelphia: Lippincott; 2015. p. 1124–40.

    Google Scholar 

  32. Kusch M, Labouvie H, Ladisch V, Fleischhack G, Bode U. Structuring psychosocial care in pediatric oncology. Patient Educ Couns. 2000;40(3):231–45.

    Article  CAS  PubMed  Google Scholar 

  33. Robert RS, Ottaviani G, Huh WW, Palla S, Jaffe N. Psychosocial and functional outcomes in long-term survivors of osteosarcoma: a comparison of limb-salvage surgery and amputation. Pediatr Blood Cancer. 2010;54(7):990–9.

    PubMed  PubMed Central  Google Scholar 

  34. Bradbrook D. Acupuncture treatment of phantom limb pain and phantom limb sensation in amputees. Acupunct Med. 2004;22(2):93–7.

    Article  PubMed  Google Scholar 

  35. Prakash S, Golwala P. Phantom headache: pain-memory-emotion hypothesis for chronic daily headache? J Headache Pain. 2011;12(3):281–6.

    Article  PubMed  PubMed Central  Google Scholar 

  36. Cassileth R, Keefe FJ. Integrative and behavioral approaches to the treatment of cancer-related neuropathic pain. Oncologist. 2010;15(Suppl):19–23.

    Article  PubMed  Google Scholar 

  37. MacIver K, Lloyd DM, Kelly S, Roberts N, Nurmikko T. Phantom limb pain, cortical reorganization and the therapeutic effect of mental imagery. Brain. 2008;131(8):2181–91.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  38. Ramachandran VS, Brang D, McGeoch PD. Size reduction using mirror visual feedback (MVF) reduces phantom pain. Neurocase. 2009;15(5):357–60.

    Article  CAS  PubMed  Google Scholar 

  39. Chambless DL, Ollendick T, Thomas H. Empirically-supported psychological interventions: controversies and evidence. Annu Rev Psychol. 2001;52:685–716.

    Article  CAS  PubMed  Google Scholar 

  40. Palermo TM. Cognitive-behavioral therapy for chronic pain in children and adolescents. Oxford: New York; 2012.

    Book  Google Scholar 

  41. Wetering EJ, Lemmens KM, Nieboer AP, Huijsman R. Cognitive and behavioral interventions for the management of chronic neuropathic pain in adults—a systematic review. Eur J Pain. 2010;14(7):670–81.

    Article  PubMed  Google Scholar 

  42. Nagarajan R, Neglia JP, Clohisy DR, Robison LL. Limb salvage and amputation in survivors of pediatric lower extremity bone tumors: what are the long-term implications? J Clin Oncol. 2002;20:4493–501.

    Article  PubMed  Google Scholar 

  43. Harris IE, Leff AR, Gitelis S, Simon MA. Function after amputation, arthrodesis, or arthroplasty for tumors about the knee. J Bone Joint Surg Am. 1990;72:1477–85.

    Article  CAS  PubMed  Google Scholar 

  44. Postma A, Kingma A, De Ruiter JH, Schraffordt Koops H, Veth RP, Goëken LN, Kamps WA. Quality of life in bone tumor patients comparing limb salvage and amputation of the lower extremity. J Surg Oncol. 1992;51:47–51.

    Article  CAS  PubMed  Google Scholar 

  45. Pao M, Wiener L. Anxiety and depression. In: Wolfe J, Hinds P, Sourkes B, editors. Textbook of interdisciplinary pediatric palliative care. Philadelphia: Elsevier; 2011. p. 229–38.

    Chapter  Google Scholar 

  46. Wiener L, Pao M. Comprehensive and family-centered psychosocial care in pediatric oncology: integration of clinical practice and research. In: Kreitler S, Ben-Arush MW, Martin A, editors. Pediatric oncology: psychosocial aspects and clinical interventions. 2nd ed. West Sussex: Wiley; 2012. p. 7–17.

    Google Scholar 

  47. Martin JR, Kodaman P, Oktay K, Taylor HS. Ovarian cryopreservation with transposition of a contralateral ovary: a combined approach for fertility preservation in women receiving pelvic radiation. Fertil Steril. 2007;87(1):189 e5–7.

    Google Scholar 

  48. Ginsberg JP, Goodman P, Leisenring W, Ness KK, Meyers PA, Wolden SL, Smith SM, Stovall M, Hammond S, Robison LL, Oeffinger KC. Long term survivors of childhood Ewing sarcoma: a report from the Childhood Cancer Survivorship Study. J Natl Cancer Inst. 2010;102:1272–83.

    Article  PubMed  PubMed Central  Google Scholar 

  49. Hudson MN, Jones KE, Mulrooney DA, Avedian R, Donaldson S, Popat R, West DW, Fisher P, Leisenring W, Stovall M, Robison LL, Ness KK. Change in health status of pediatric upper and lower extremity sarcoma: a report from the Children’s Cancer Survivorship Study. Arch Phys Med Rehabil. 2013;94:1062–73.

    Article  PubMed  PubMed Central  Google Scholar 

  50. Wiener L, Battles H, Bernstein D, Long L, Derdak J, Mackall CL, Mansky P. Persistent psychological distress in long-term survivors of pediatric sarcoma: the experience at a single institution. Psychooncology. 2006;15(10):898–910.

    Article  PubMed  PubMed Central  Google Scholar 

  51. Koopman HM, Koetsier JA, Taminiau AHM, Hijnen KE, Bresters D, Egeler RM. Health related quality of life and coping strategies of children after treatment of a malignant bone tumor: a five year follow up study. Pediatr Blood Cancer. 2005;45(5):694–9.

    Article  PubMed  Google Scholar 

  52. Van Riel CAHP, Meijer-van den Bergh EEM, Kemps HLM, Feuth T, Schreuder HWB, Hoogerbrugge PM, Groot IJM, Mavinkurve-Groothuis AM. Self-perception and quality of life in adolescents during treatment for a primary malignant bone tumour. Eur J Oncol Nurs. 2014;18(3):267–72.

    Article  PubMed  Google Scholar 

  53. Fritz GK, Williams JR, Amylon M. After treatment ends: psychosocial sequelae in pediatric cancer survivors. Am J Orthopsychiatry. 1988;58:552–61.

    Article  CAS  PubMed  Google Scholar 

  54. Merchant M, Wright M. Sarcomas and other solid tumors. In: Wiener L, Pao M, Kazak AE, Kupst MJ, Patenaude AF, editors. Quick reference for pediatric oncology clinicians: the psychiatric and psychological dimensions of cancer symptom management. Charlottesville, VA: Oxford University Press; 2015.

    Google Scholar 

  55. Children’s Oncology Group. Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. Version 3.0, Appendix 1, Arcadia, CA; 2008.

    Google Scholar 

  56. Horowitz ME, Fordis M, Krause S, McKellar J, Poplack DG. Passport for care: implementing the survivorship care plan. J Oncol Pract. 2009;5(3):110–2.

    Article  PubMed  PubMed Central  Google Scholar 

  57. Weir RF, Peters C. Affirming the decision adolescents make about life and death. Hastings Cent Rep. 1997;27:29–40.

    Article  CAS  PubMed  Google Scholar 

  58. Wicks L, Mitchell A. The adolescent cancer experience. Loss of control and benefit finding. Eur J Cancer Care (Engl). 2010;19(6):778–85.

    Article  CAS  Google Scholar 

  59. Wiener L, Zadeh S, Battles H, Baird K, Ballard E, Osherow J, Pao M. Allowing adolescents and young adults to plan their end-of-life care. Pediatrics. 2012;130(5):897–905.

    Article  PubMed  PubMed Central  Google Scholar 

  60. Wiener L, Zadeh S, Wexler L, Pao M. When silence is not golden: engaging adolescents and young adults in discussions around end-of-life care choices. Pediatr Blood Cancer. 2013;60(5):715–8.

    Article  PubMed  PubMed Central  Google Scholar 

  61. Zadeh S, Pao M, Wiener L. Opening end-of-life discussions: how to introduce voicing my CHOiCES™, an Advance Care Planning Guide for Adolescents and Young Adults. Palliative and supportive care, E-published ahead of print; 2014.

    Google Scholar 

  62. Wiener L, Sweeney C, Baird K, Merchant MS, Warren KE, Corner GW, Roberts KE, Lichtenthal WG. What do parents want to know when considering autopsy for their child with cancer? J Pediatr Hematol Oncol. 2014;36(6):464–70.

    Article  PubMed  PubMed Central  Google Scholar 

  63. deCinque N, Monterosso L, Dadd G, Sidhu R, Lucas R. Bereavement support for families following the death of a child from cancer: practice characteristics of Australian and New Zealand Paediatric Oncology Units. J Paediatr Child Health. 2004;40:131–5.

    Article  CAS  PubMed  Google Scholar 

  64. Heiney S, Wells L, Ruffin J. A memorial service for families of children who died from cancer and blood disorders. J Pediatr Oncol Nurs. 1996;13:72–9.

    Article  CAS  PubMed  Google Scholar 

  65. Johnson L, Rincon B, Gover C, Rexin D. The development of a comprehensive bereavement program to assist families experiencing pediatric loss. J Pediatr Nurs. 1993;8:142–6.

    CAS  PubMed  Google Scholar 

  66. Neidig J, Dalgas-Pelish P. Parental grieving and perceptions regarding health care professionals’ interventions. Issues Compr Pediatr Nurs. 1991;14:179–91.

    Article  CAS  PubMed  Google Scholar 

  67. Whittam EH. Terminal care of the dying child. Cancer. 1993;71:3450–2462.

    Article  CAS  PubMed  Google Scholar 

  68. Davies B, Limbo R, Jin J. Grief and bereavement in pediatric palliative care. In: Ferrell BR, Coyle N, editors. Oxford textbook of palliative nursing. 3rd ed. New York: Oxford University Press. p. 1081–97).

    Google Scholar 

  69. Kissane DW. Bereavement. In: Doyle D, Hanks G, Cherny N, Calman K, editors. Oxford textbook of palliative medicine. Oxford: Oxford University Press; 2004. p. 1137–51.

    Google Scholar 

  70. Macdonald ME, Liben S, Carnevale FA, Rennick JE, Wolf SL, Meloche D, Cohen SR. Parental perspectives on hospital staff members’ acts of kindness and commemoration after a child’s death. Pediatrics. 2005;116(4):884–90.

    Article  PubMed  Google Scholar 

  71. National Hospice and Palliative Care Association. Standard, bereavement care and services, BCS 1. Defined Bereavement Program; 2000.

    Google Scholar 

  72. Wolfe J, Hinds PS, Sourkes BM. Textbook of interdisciplinary pediatric palliative care. Philadelphia: Elsevier; 2011.

    Google Scholar 

  73. Kurt BA, Armstrong GT, Cash DK, Krasin MJ, Morris EB, Spunt SL, Robison LL, Hudson MM. Primary care management of the childhood cancer survivor. J Pediatr. 2008;152(4):458–66.

    Article  PubMed  Google Scholar 

  74. American Hospital Association (AHA). In the name of the patient. Chicago: American Hospital Association; 2002.

    Google Scholar 

  75. Goehring K. New tools to measure patient satisfaction. Health Care Exec. 2001;15:71–2.

    Google Scholar 

  76. Martin DR, Tipton BK. Patient advocacy in the USA: key communication role functions. Nurs Health Sci. 2007;9:185–91.

    Article  PubMed  Google Scholar 

  77. Ross J. Keeping the focus on satisfaction. Health Care Exec. 2001;16:62–3.

    CAS  Google Scholar 

  78. Kupst MJ, Schulman JL. Long-term coping with pediatric leukemia: a six-year follow-up study. J Pediatr Psychol. 1988;13(1):7–22.

    Article  CAS  PubMed  Google Scholar 

  79. Kupst MJ, Natta MB, Richardson CC, Schulman JL, Lavigne JV, Das L. Family coping with pediatric leukemia: ten years after treatment. J Pediatr Psychol. 1995;20(5):601–17.

    Article  CAS  PubMed  Google Scholar 

  80. U.S. Department of Health and Human Services (Division of Maternal and Child Health). Surgeon general’s report: children with special health care needs (DHHS Publication No. HRS/D/MC 87–2). Washington, DC: Government Printing Office; 1987.

    Google Scholar 

  81. Rosenbaum P, King S, Law M, King G, Evans J. Family-centered service: a conceptual framework and research review. Phys Occup Ther Pediatr. 1998;18:1–20.

    Google Scholar 

  82. Woodside JM, Rosenbaum PL, King SM, King GA. Family-centered service: developing and validating a self-assessment tool for pediatric service providers. Child Health Care. 2001;30:237–52.

    Article  Google Scholar 

  83. King SM, Rosenbaum PL, King GA. Parents’ perceptions of caregiving: development and validation of a measure of processes. Dev Med Child Neurol. 1996;38:757–72.

    Article  CAS  PubMed  Google Scholar 

  84. Barrera M. Brief clinical report: procedural pain and anxiety management with mother and sibling as co-therapists. J Pediatr Psychol. 2000;25:117–21.

    Article  CAS  PubMed  Google Scholar 

  85. Broome ME, Rehwaldt M, Fogg L. Relationships between cognitive behavioral techniques, temperament, observed distress, and pain reports in children and adolescents during lumbar puncture. J Pediatr Nurs. 1998;13:48–54.

    Article  CAS  PubMed  Google Scholar 

  86. Manne SL, Redd WH, Jacobsen PB, Gorfinkle K, Schorr O, Rapkin B. Behavioral intervention to reduce child and parent distress during venipuncture. J Consult Clin Psychol. 1990;58:565–72.

    Article  CAS  PubMed  Google Scholar 

  87. Powers SW, Blount RL, Bachanas PJ, Cotter MW, Swan SC. Helping preschool leukemia patients and their parents cope during injections. J Pediatr Psychol. 1993;18:681–95.

    Article  CAS  PubMed  Google Scholar 

  88. Smith JT, Barabasz A, Barabasz M. Comparison of hypnosis and distraction in severely ill children undergoing painful medical procedures. J Couns Psychol. 1996;43:187–95.

    Article  Google Scholar 

  89. Rosen, P., Stenger, E., Bochkoris, M., Hannon, M., J., & Kwoh, C. K. (2009). Family-centered multidisciplinary rounds enhance the team approach in pediatrics. Pediatrics, 123, 4, e603-e608.

    Google Scholar 

  90. Noll RB, Patel SK, Embry L, Hardy KK, Pelletier W, Annett RD, Patenaude A, Lown EA, Sands SA, Barakat LP. Children’s Oncology Group’s 2013 Blueprint for research: behavioral science. Pediatr Blood Cancer. 2013;60:1048–54.

    Article  PubMed  Google Scholar 

  91. Wiener L, Viola A, Koretski J, Perper ED, Patenaude AF. Pediatric psycho-oncology care: standards, guidelines, and consensus reports. Psychooncology. 2014;24(2):204–11. doi:10.1002/pon.3589.

    Article  PubMed  PubMed Central  Google Scholar 

  92. Jacobsen PB, Wagner LI. A new quality standard: the integration of psychosocial care into routine cancer care. J Clin Oncol. 2012;30(11):1154–9.

    Article  PubMed  Google Scholar 

  93. Wiener L, Kazak AE, Noll R, Patenaude AF, Kupst MJ. Standards for the psychosocial care of children with cancer and their families. Pediatr Blood Cancer. 2015;62(S5):425.

    Article  Google Scholar 

  94. Alam R, Barrera M, D’Agostino N, Nicholas DB, Schneiderman G. Bereavement experiences of mothers and fathers over time after the death of a child due to cancer. Death Stud. 2012;36(1):1–22.

    Article  PubMed  Google Scholar 

  95. Kreichbergs U, Valdimarsdottir U, Onelov E, Henter JI, Steineck G. Talking about death with children who have severe malignant disease. N Engl J Med. 2004;351:1175–86.

    Article  Google Scholar 

  96. Wing DG, Clance PR, Burge-Callaway K, Armistead L. Understanding gender differences in bereavement following the death of an infant: implications for treatment. Psychotherapy. 2001;38:60–73.

    Article  Google Scholar 

  97. Li J, Precht DH, Mortensen PB, Olsen J. Mortality in parents after death of a child in Denmark: a nationwide follow-up study. Lancet. 2003;361:363–7.

    Article  PubMed  Google Scholar 

  98. Znoj HJ, Keller D. Mourning parents: considering safeguards and their relationship to health. Death Stud. 2002;26:545–65.

    Article  PubMed  Google Scholar 

  99. Rechis R, Beckjord EB, Arvey SR, Reynolds KA, McGoldrick D. The essential elements of survivorship care: a livestrong brief. 2011. Retrived from http://www.livestrong.org/pdfs/3-0/EssentialElementsBrief

  100. AGREE Collaboration. Development and validation of an international appraisal instrument for assessing the quality of clinical practice guidelines: the AGREE project. Qual Saf Health Care. 2003;12:18–23.

    Article  Google Scholar 

  101. Guyatt GH, Oxman AD, Vist GE, Kunz R, Falck-Ytter Y, Alonso-Coello P, Schünemann HJ. GRADE: an emerging consensus on rating quality of evidence and strength of recommendations. BMJ. 2008;336:924–6.

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Mattie Miracle Cancer Foundation, Washington, DC, USA

    Victoria A. Sardi-Brown Ph.D. & Peter J. Brown M.B.A.

  2. Medical College of Wisconsin, Milwaukee, WI, USA

    Mary Jo Kupst Ph.D.

  3. Psychosocial Support and Research Program, Behavioral Science Core, National Cancer Institute, Bethesda, MD, USA

    Lori Wiener Ph.D., D.C.S.W.

Authors
  1. Victoria A. Sardi-Brown Ph.D.
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Mary Jo Kupst Ph.D.
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Peter J. Brown M.B.A.
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Lori Wiener Ph.D., D.C.S.W.
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Victoria A. Sardi-Brown Ph.D. .

Editor information

Editors and Affiliations

  1. Medstar Orthopedic Oncology, Washington Cancer Institute, Washington, District of Columbia, USA

    Robert M. Henshaw

Rights and permissions

Reprints and permissions

Copyright information

© 2017 Springer International Publishing Switzerland

About this chapter

Cite this chapter

Sardi-Brown, V.A., Kupst, M.J., Brown, P.J., Wiener, L. (2017). Psychosocial Issues in Children with Cancer: The Role of Patient Advocacy and Its Impact on Care. In: Henshaw, R. (eds) Sarcoma. Springer, Cham. https://doi.org/10.1007/978-3-319-43121-5_18

Download citation

  • DOI: https://doi.org/10.1007/978-3-319-43121-5_18

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-43119-2

  • Online ISBN: 978-3-319-43121-5

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation