This week, Real World Health Care focuses on emotional stress associated with childhood cancer. We hear from Jessica Cook, MSW, Patient & Family Services Coordinator for the National Children’s Cancer Society (NCCS), about the services NCCS offers to help patients’ families cope with the disease’s devastating financial toll.
Real World Health Care: Tell us about the mission and goals of the NCCS.
Jessica Cook: The National Children’s Cancer Society (NCCS) tirelessly and compassionately supports families making their way through the daunting world of childhood cancer. With over thirty years of experience serving nearly 42,000 children, the NCCS has become a master navigator of this world, helping families get where they need to be-physically, financially and emotionally. Distributing more than $65 million to families over its lifetime, the NCCS is able to take a “no matter what” approach, creating a clear path through the labyrinth of childhood cancer and survivorship to help families stay strong, stay positive and stay together. Because no family should go through childhood cancer alone.
The average cost to treat a child with cancer is over $800,000. The financial and emotional impact a diagnosis has on the entire family is devastating. The NCCS seeks to help unburden some of the financial devastation. By providing transportation assistance, whether a family is local or needing to fly across the country, the NCCS ensures that the child is able to get to the life-saving treatment facility no matter what. For families having to remain in the hospital or relocated from home, we offer a one-time per year emergency stipend to help with expenses like meals while in the hospital, insurance premiums, household expenses, prescriptions, car expenses, and child care.
RWHC: What other types of support programs do you offer?
JC: In an effort to alleviate some of the behavioral issues children diagnosed with cancer face, we offer a mentorship program. Studies indicate that a mentoring program increases adjustment post treatment, reduces children’s anxiety and increases both self-care skills and self -confidence. Our program connects young adult childhood cancer survivors with children who are currently in treatment. The mentor acts as a knowledgeable and experienced guide, a trusted ally and caring role-model throughout the school year.
Behavioral Health Challenges
RWHC: Do children with cancer face unique behavioral health problems that aren’t as prevalent in adults with cancer?
JC: Children with cancer may face unique challenges such as missing school, isolation from extended family and peers due to compromised immune systems, survivor’s guilt, anxiety, depression, and difficulties in school.
RWHC: Do children with cancer have a difficult time accessing behavioral health treatments?
JC: The biggest challenges families face involve insurance coverage, geographic location and time. Frequently, facilities offer group work to help address some of the behavioral issues children and their families face, however many simply live too far or don’t have the time to make another trip to the hospital and are unable to benefit from the resource. The NCCS recognizes the value of counseling for children with cancer and provides transportation assistance to ensure the child receives the support they need. It is important to note, that while initially children may experience anxiety and depression, decades of research on the impact of pediatric cancer and the psychological and emotional functioning of children indicate that a minority of youth demonstrate a long-term clinically relevant distress. In fact, the majority of cancer survivors show good psychological functioning.
Let Your Child Be a Child
RWHC: What can parents do to help ensure that their financial distress does not add to the stress children are already under when they find out they have cancer?
JC: The most important thing that parents can do is allow their child to be a child. It is not the child’s role to be a part of financial discussions especially as it relates to their diagnosis. When facing the financial challenges associated with their child’s diagnosis it’s important for parents to assess the personal impact the diagnosis will have on the family. Things to look at include loss of income, increased living expenses — such as child care and travel costs — and insurance coverage. The increased expenses can seem overwhelming, but creating a monthly budget can help provide some understanding and control over their financial situation. Above all, it’s important that families understand that they are not alone. There should be no fear or embarrassment when reaching out to resources, like the National Children’s Cancer Society, to help with the costs associated with treatment, and in discussing any financial or emotional concerns with members of their child’s treatment team.