October 6, 2011, Austin, TX - With the sad news of the death of Steve Jobs, headline news stories speak of what this loss means to Apple, to the technology industry, to our nation, and the world. While there is no denying the impact Jobs has had on the 21st century, there is a quieter though more devastating impact of coping, grieving, loss, and healing going on behind the scenes as Jobs’ family faces a loss bigger than the icon, the loss of their father to pancreatic cancer.
It is estimated that 44,030 men and women will be diagnosed with cancer of the pancreas this year.1 The National Cancer Institute estimates that 25% or one in four new cancer cases will occur in an adult with a child under age 18 living at home.
As traumatic as it can be for an adult to be diagnosed with cancer, psychologists report it can be even more devastating to a child. It is well known that experiencing a stressful life event can cause psychosocial problems in children. Children may react to parental cancer in particular by internalizing problems (e.g. depression, withdrawal) and developing posttraumatic stress symptoms.
Data-based studies show that an ill parent is in a highly challenged position to effectively parent a child about cancer in ways that minimize the threat to the child and help the child manage what is happening. The reality is that diagnosed parents, even highly educated and credentialed parents, report they do not know what to do or say to help their child.
Unfortunately, there is also a conspiracy of respectful silence: parents do not want to scare the child by talking about the cancer; and the child does not want to add to the burden of an already over-burdened parent. This is true for young school age children as well as adolescent children.
Despite the documented adverse effects and magnitude of the numbers of potentially affected children, most therapies, services and programs in cancer are focused on the diagnosed patient, not on the family or children. To date, little has been done to help children and families survive the challenges raised when a parent has cancer. Research is leading to new information about families facing cancer and interventions for helping them cope. Medical professionals and community members who work with children share in the concern about affected children. They want to provide helpful, informed support to parents and children, but rarely has either group had the opportunity to receive specific education about how children at different ages understand cancer, ways to support good parenting practices during times of challenge, or ways to address the differing needs of children.
In 2001, Wonders & Worries was launched with the support of the Lance Armstrong Foundation, which provided funding to conduct a pilot support group for children who had a parent with cancer. Today, Wonders & Worries works with families in all stages of survivorship, who are affected by cancer, or any life-threatening or chronic physical illness. The organization’s 6-week comprehensive, individualized counseling program for children is copyrighted, and professional third party analysis indicates the program has proven results with children and families. It is the only program of its kind in the region, state, country, and beyond.
Wonders & Worries services are based on empirical data which shows that psychosocial support and illness education provided to children at an age-appropriate level significantly helps children, eases stress within the family, improves parent’s depressed mood, and increases the parent’s ability to focus on treatment and well-being.
We are learning that cancer is a disease that affects the entire family. The benefits of psychosocial services for children and families during a health crisis are in the infancy of research, but experts assert that children who receive support services will have a decrease in risk behavior, they will learn resiliency and coping skills that will serve them for a lifetime, they will have less instances of posttramatic stress symptoms, and they will have a decreased need for continued psychosocial services into adulthood.
Steve Jobs is rumored to have given $150 million to the Helen Diller Family Comprehensive Cancer Center at the University of California in San Francisco. Maybe the world’s greatest entrepreneur recognized the extensive need for support services to children and families struggling with a health crisis.
To learn more, refer a family, or to help local children cope with a parent’s life-threatening illness, visit www.wondersandworries.org.