For parents, hearing the words, “You have cancer,” is traumatic. But learning your child has the life-threatening illness is a hard-hitting emotional experience no parent hopes he or she will ever have to face.
Experts say that parents who receive such news often describe experiencing shock, feeling numb, or feeling as if they have been hit over the head.
Parents also report feeling confused or being unable to hear, remember, or think clearly when the doctor explains their child’s diagnosis or treatment plan.
A cancer diagnosis doesn’t just affect the patient. It affects the whole family, says Diane Fairclough, DrPH, MSPH, CU Cancer Center investigator and director of the Analytics Core at the Colorado Health Outcomes Center.
Family members of a child with cancer often suffer from various forms of distress associated with the child’s illness. Parents report feelings of anxiety, depression, symptoms of post-traumatic stress disorder (PTSD), and distress related to the adjustment of the child's siblings. These challenges are especially pronounced at diagnosis when families struggle to adapt.
Siblings often report similar feelings too. They may feel anxious, stressed, overwhelmed, neglected and guilty, according to the American Psychological Association.
Fairclough and her colleagues at the University of Rochester, M.D. Anderson Cancer Center, University of Texas El Paso, Miller Children’s Hospital Long Beach, Children’s Hospital Los Angeles, Children’s Hospital of Pittsburgh, and St. Jude Children’s Research Hospital have been studying ways to help families cope.
They’ve learned that when you support the mother you support the family.
“Earlier research shows that a mom is the keystone of a family. After a child’s cancer diagnosis, if mom is stressed and not coping, you see the effects on the marriage and on siblings as well,” said Fairclough.
The researchers carried out a multi-site clinical trial with 309 mothers to see if providing training in problem-solving skills to parents can lessen the emotional impact on the entire family.
The help is offered shortly after the child’s diagnosis to kickstart the adaptive process.
The result of that study, published in the online edition of Journal of Clinical Oncology showed that the problem-solving training, dubbed Bright IDEAS, works.
Beyond teaching parents to navigate the complex medical, educational, and other systems that accompany a child’s cancer diagnosis, training also led to lasting reduction in mothers’ anxiety and depression levels, and they had fewer symptoms of post-traumatic stress.
Overall problem-solving training improved her ability to cope with the child’s illness, the study said.
There was just one problem.
Time and resource requirements made the 8-week training prohibitive for most parents. Now the group is working with a grant from the National Cancer Institute to devise an online program in English and Spanish, so more parents can access the training on their own schedule.
The beta test will begin this April at a handful of pediatric cancer hospitals. After that, the researchers will conduct a randomized trial to help determine whether or not the web version is as effective as the face-to-face class.
If all goes well, a public version could be ready in a few years.
In the meantime, Fairclough says, parents aren’t alone. She recommends they not be hesitant to take advantage of an array of local resources provided to families of pediatric cancer patients.
“It’s something the whole family needs and can benefit from,” she said.
The researcher personally understands the effects of a cancer diagnoses on a family. At age 24, Fairclough was told she had Hodgkin’s lymphoma, a type of cancer originating in the lymph nodes. She watched as her parents struggled through her diagnosis and treatment.
“Having been a cancer patient myself, I think the most stressing thing is that there’s a sense that the disease has taken over your life. It defines your schedule, your family vacations; you can’t change employers because of insurance concerns.
"I think problem-solving skills training helps mothers pull back some control after their child’s diagnosis. It makes things seem manageable and gives parents a sense they’re not just helpless observers, ” she says.
Lynette Summerill is an award-winning writer and Scuba enthusiast who lives in San Diego with her husband and two beach loving dogs. In addition to writing about cancer-related issues for EmpowHER, her work has been seen in publications around the world.
Sources:
”Specificity of Problem-Solving Skills Training in Mothers of Children Newly Diagnosed With Cancer: Results of a Multisite Randomized Clinical Trial.” OJ Sahler, MJ Dolgin, S Phipps, DL Fairclough, MA Askins, ER Katz, RB Noll and RW Butler. J. Clin Oncology. 2013 Jan 28. Abstract and article online:
http://www.ncbi.nlm.nih.gov/pubmed/23358975
Interview Diane Fairclough, Director Analytics Core at the Colorado Health Outcomes Center, 13 Feb. 2013.
Study shows that problem-solving training helps mothers cope with child’s cancer diagnosis. Garth Sundem, University of Colorado Cancer Center· February 12, 2013
http://www.coloradocancerblogs.org/category/in-the-clinic
Psychological Impact of Childhood Cancer. Fact sheet. American Psychological Association.
http://www.apa.org/pi/families/.../childhood-cancer-fact-sheet.pdf
Children with Cancer: Dealing with Diagnosis. American Cancer Society. Guide available for download:
http://www.cancer.org/treatment/childrenandcancer/whenyourchildhascancer/childrendiagnosedwithcancerdealingwithdiagnosis/children-diagnosed-with-cancer-dealing-with-diagnosis-how-parents-react
Reviewed February, 19 2013
by Michele Blacksberg RN
Edited by Jody Smith