When a child or teen is diagnosed with cancer the entire family is thrown into crisis mode, as each member of the family unit attempts to cope with the news in their own way. Family members and caregivers of a child with cancer may experience a roller coaster of emotions before/during/after the diagnosis and throughout their child’s cancer treatment. Oftentimes, initial responses to a childhood cancer diagnosis from caregivers and family members may include:
- Shock and disbelief
- Fear and anxiety
- Sadness, depression and grief
- Frustration and anger
The challenges continue even after family members and caregivers have come to grips with the initial cancer diagnosis, as they now must attempt to navigate complex health insurance and financial issues while providing their sick child with the best possible quality of life and making life-changing decisions about their child’s medical treatment.
The American Childhood Cancer Organization (ACCO) understands that family members and other caregivers of a child with cancer have specific needs that must be met during this stressful time:
- Clear and succinct, yet detailed information about the child’s diagnosis and treatment options presented in easily understandable terminology
- Caregivers are often tasked with making difficult decisions about their child’s medical care, and they need to have a complete understanding about the full range of treatment options and potential risks associated with those choices prior to giving their approval for tests and procedures.
- Forewarnings about the potential short- and long-term effects of their child’s cancer treatment, as well as the risk of secondary cancer, heart or lung damage, or potential fertility problems that their child may face in the future
- Many pediatric cancer treatments are focused on managing the most pressing health issues the child is facing, but knowledge about long-term ramifications of these treatments are vital to allow caregivers to make fully informed decisions prior to consenting to any treatment.
- Caregivers also need assistance when dealing with the ‘late effects’ and long-term health issues linked to their child’s cancer treatment.
- Resources for parents and other caregivers of childhood cancer survivors are crucial tools to help their child successfully transition back to school and shift the family back to a “normal” routine.
- Informative resources to help ease the financial strain of medical bills, along with guidance to navigate complex health insurance issues
- Many caregivers struggle to balance the responsibilities of their job while caring for a sick child, and as medical bills pile up, this can add to the already overwhelming stress of the situation—easy access to information about managing finances during a time of crisis can ease the burden on parents/caregivers
- Coping tools and support networks to help caregivers handle the intense physical and emotional duress, feelings of isolation and loneliness, anxiety, and sleep deprivation
- Finding healthy outlets to process your feelings and help minimize the isolation during times of stress can be crucial to a caregiver’s own health and well-being—you need to know that you are not along in this struggle, and finding a community of individuals who have shared similar experiences can be a powerful source of hope, insight, and a way to lift your spirits even in the darkest of times
- Although caring for a sick child often consumes the majority of a caregiver’s time and energy, it is important to maintain a healthy personal and family life outside of the hospital—this serves to preserve a sense of normalcy and promotes a positive outlook for the future that is beneficial not only for the caregiver, but also for the child they are caring for
Knowledge is a powerful weapon in the fight against childhood cancer, and the ACCO has compiled the following free resources, support networks, and educational sites/publications to help family members and caregivers of children with cancer/childhood cancer survivors manage the aforementioned challenges—by taking care of yourselves and your family this difficult time you will be able to provide the best support possible to your child battling cancer.
- BECOME AN ACCO FAMILY
- 24 HOUR ONLINE PEER SUPPORT
- GET HELP FROM A LOCAL GROUP
- EDUCATE OTHERS
- FOR SIBLINGS
- OUTSIDE RESOURCES
- GET INVOLVED