Parents’ Perspective on the Role of Psychosocial Care in Pediatric Oncology

© Springer International Publishing Switzerland 2016
Annah N. Abrams, Anna C. Muriel and Lori Wiener (eds.)Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care10.1007/978-3-319-21374-3_22

22. Parents’ Perspective on the Role of Psychosocial Care in Pediatric Oncology

Victoria A. Sardi-Brown  and Peter J. Brown 

Mattie Miracle Cancer Foundation, 6485, Arlington, VA 22206, USA



Victoria A. Sardi-Brown (Corresponding author)


Peter J. Brown


It is well understood that cancer is the worldwide leading cause of death by disease (World Health Organization 2014). However, in our society, it is much more common for people to know adults who have been diagnosed with cancer rather than children. Children are not supposed to contract life-threatening illnesses and potentially die before their parents. This goes against the natural order of life. On a daily basis, we are inundated with news and exposed to crises and tragedies both nationally and internationally through the media. People seem intrigued to view all sorts of other news and videos online but shy away from those associated with childhood cancer. These visuals stimulate parents’ worst fears and therefore in order to cope with such painful realities, sometimes parents of healthy children rationalize childhood cancer away by saying, “this couldn’t possibly happen to my child.”

Each year, 15,700 families in the United States hear, “your child has cancer” (CureSearch 2014). It is hard to imagine how four little words can transform your life, but they do in a very surreal way. Almost as if you are a bystander in a car crash and you are watching it happen in slow motion. In slow motion, because with childhood cancer, it is not just the one time diagnosis that is tragic and overwhelming, but instead, the cancer journey is a series of significant losses. As a parent, you long for the life you left behind and yet you are cognizant that things will never be the same again.

When a child is diagnosed with cancer, parents are faced with a multitude of pervasive stressors such as the burden of adhering to a complicated treatment regiment (Pai et al. 2007) and significant medical side effects (Bryant 2003; Pai et al. 2007), but “childhood cancer is not just about the medicine” (Mattie Miracle Cancer Foundation 2014). The common factor that unites all children and families together is the psychological and social concerns, fears, and day-to-day management of the disease. The whole family is affected and forever changed (Alderfer and Kazak 2006; Varni et al. 1996; Wallander et al. 1992). Childhood cancer is as much a psychological disease as it is a physical one in which children and families need help managing the day-to-day isolation, pain, treatment challenges, and the consequences on their daily life. Childhood cancer threatens every aspect of the family’s life and the possibility of a future, which is why optimal cancer treatment must include psychosocial care services (Institute of Medicine 2008).

This chapter is written by two parent advocates who give voice to their son, Mattie, and his courageous journey with osteosarcoma. We discuss our perspectives on the role of psychosocial care along the cancer continuum from the time of diagnosis to end-of-life care, highlighting conversations and approaches that were learned along the journey. Finally, the collaboration between parent advocates and leading health-care providers that is underway to develop national psychosocial standards of care for childhood cancer is described.

Mattie Brown and The Mattie Miracle Cancer Foundation

Mattie was born on April 4, 2002. Mattie was a precocious child who demonstrated many strengths, such as a sense of humor, observational skills, ability to understand how things worked (at the tender age of two he was disassembling and reassembling his hot wheel cars with a screwdriver), and empathy beyond his years. He had a vivacious and voracious need to have fun, and he convinced others to participate in his antics. In July of 2008, when Mattie was 6 years old and attending a tennis camp, he complained of pain in his right arm. When the symptoms got worse, his pediatrician ordered an x-ray, which revealed a mass suggestive of osteosarcoma in Mattie’s right humerus. CT, MRI, PET scans, and a biopsy confirmed four primary tumor sites: (1) right humerus, (2) left humerus, (3) right femur, and (4) left radius. We were informed that our only child had multifocal synchronous osteosarcoma.

Sixteen days after diagnosis, Mattie began 14 months of treatment including high-dosage chemotherapies with doxorubicin, cisplatin, methotrexate, ifosfamide, and etoposide. He underwent three limb-salvaging surgeries and a bone graft. Eleven months after his diagnosis, Mattie had a sternotomy, to remove the nine tumors found in his lungs.

What we, as Mattie’s parents and our family members, observed was his struggle to learn how to cope with the profound functional impact of his surgeries and the change in his daily life due to his treatments. He could no longer walk, run, dress, or toilet himself. Within months of his second surgery, Mattie began working with a child psychiatrist who diagnosed him with clinical depression, anxiety, and medical post-traumatic stress disorder. He was started on Celexa and Klonopin to reduce his significant sadness and anxiety.

In August of 2009, only 6 weeks off of chemotherapy, scan results revealed that Mattie’s cancer had spread to his lungs and liver. Conversations with Mattie’s medical team turned from curative intent to end-of-life care. We had to face our worst fears: the reality that our child was dying and the stressful and frightening medical decisions associated with this reality. Mattie died on September 8, 2009.

The devastation of losing a child to cancer is both unimaginable and indescribable for parents. Such a death symbolizes a reversal of the natural order of life and it erases the dreams and hopes that parents have for their child and for themselves (Alam et al. 2012). Parents may continue to grieve long after the death of their child (Kreichbergs et al. 2004; Wing et al. 2001). Such chronic grief has been associated with many psychological (e.g., depression and anxiety) and somatic symptoms (e.g., loss of appetite, sleep disturbances, and fatigue), including increased mortality risk (Alam et al. 2012; Li et al. 2003; Wing et al. 2001; Znoj and Keller 2002). In November of 2009, two months after Mattie’s death, we created the Mattie Miracle Cancer Foundation, a 501(c)(3) tax-exempt public charity. Mattie Miracle is headquartered in Washington, DC, and is dedicated to addressing the psychosocial needs of children and families living with childhood cancer as well as educating health-care providers on the impact of such a diagnosis on children and their families. The foundation enhances awareness, advocacy, and access to psychosocial support on both the local and national levels.

Psychosocial Care along the Continuum

The provision of psychosocial care has been shown to yield better management of common disease-related symptoms and adverse effects of treatment such as pain and fatigue (Jaaniste et al. 2007; Jacobsen et al. 2012; Kazak 2005). Within the first few days and weeks of a diagnosis, parents immediately seek out information and supportive resources to reduce the chaos they are experiencing (Björk et al. 2005). However, the strain of such a diagnosis can send parents into shock (McGrath et al. 2007) making it difficult to recall and process medical information under stress (Jedlicka-Köhler et al. 1996). Parents are learning medical terminology, understanding the nature of their child’s disease and treatment plan, maintaining their child’s day-to-day care, figuring out how a hospital works and the hierarchy of the personnel within it, and of course doing all of these while potentially trying to maintain a job and the rest of their family’s obligations.

Establishing a therapeutic alliance between psychosocial professionals and children/parents is a vital aspect of pooling resources together toward a common goal (Masera et al. 1998). Though parents need the support, guidance, and resources that their psychosocial care team provides, it is important for clinicians to approach families right from the beginning with the attitude that they are an integral part of the treatment team. Parents have an expert understanding of their own children and clinicians need to respect these insights. This is critically important for parents who feel vulnerable and powerless over their child’s disease (Holm et al. 2003) and the uncertainty surrounding their child’s treatment outcome.

Diagnosis: Fight Mode

After Mattie was diagnosed with cancer, we went into a mental fight mode, in which we became hypervigilant about his care and sought out vast amounts of medical information about osteosarcoma. Though we understood Mattie had a poor prognosis, we did not want to give up hope. In fact, the fight mode kept us very focused on Mattie’s care and empowered us to help him cope with cancer. Mattie was a sensitive and intuitive child, and like many children, he took his cues from us, his parents. If Mattie had sensed our fears about his treatment, it would have negatively impacted his outlook on his cancer care. It is imperative for psychosocial providers to respect the significance of this fight mode and understand that trying to discuss emotionally laden issues at this point in time may be counterproductive, particularly if parents are in the same room as their child.

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Oct 31, 2016 | Posted by in PEDIATRICS | Comments Off on Parents’ Perspective on the Role of Psychosocial Care in Pediatric Oncology

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