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

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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.

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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.

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  1. Victoria A. Sardi-Brown Ph.D.
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  3. Peter J. Brown M.B.A.
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  4. Lori Wiener Ph.D., D.C.S.W.
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Correspondence to Victoria A. Sardi-Brown Ph.D. .

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

    Robert M. Henshaw

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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

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