Harriet Berman, PhD, Program Director
The Wellness Community – Greater Boston
It is reported that 24% percent of adults diagnosed with cancer have school-age children (NCI, 1992). Given the role of pediatricians in the lives of families, this statistic means that most pediatricians will find themselves in the position of consulting to parents about how to best respond to the needs of their children when there is a diagnosis of cancer in the family.
The importance of both understanding and attending to the psychosocial needs of children in this situation is critical to the continued healthy functioning of the family system. Studies in current psychological and medical literature suggest that children living with a parent with cancer are under unique kinds of stress, which may place them at a higher risk for adjustment problems, inconsistent or poor academic performance, anxiety, and behavior problems at school and at home.
But the literature also includes examples of studies that do not find these children to be functioning worse than their peers with healthy parents. In fact, children can be quite resilient when faced with potentially traumatic events. The specifics of how various factors promote positive coping for some children, but not others, are not yet well understood. Clinical wisdom, however, suggests that consistent support across the many systems of which a child is part is likely to be helpful to most children, to prevent stress-related symptoms and support resilience.
The Wellness Community of Greater Boston is a non-profit agency that provides support, stress management and educational services to people with cancer and their families. Through support groups, mind-body classes and workshops conducted by local experts in oncology and psycho-oncology, people find ways to maintain hope, increase feelings of control and decrease the loneliness that a diagnosis of cancer can bring. As part of this mission, services for children and teens who have a parent with cancer have always been a priority.
"Kids Count Too!" is a program that meets on the third Saturday of every month from 1:00pm to 3:00pm. The goal is to bring kids together with other children facing the same challenges, and in a fun and safe atmosphere, to help strengthen their coping skills. Each month a different theme is chosen as a focus: understanding changes in the family, managing worries, learning about community supports, dealing with feeling different, etc. The children, grouped by age, participate in an activity or craft project related to the theme. Simultaneously, the parents meet in a support group to discuss issues related to parenting during a serious illness. Licensed social workers and psychologists facilitate the activities of both groups.
Teens who have a parent with cancer participate in the program as "teen mentors." They assist in facilitating the program and meet with clinicians to debrief after the sessions. While it is difficult to get teens to commit to a support group for themselves, in this model they come to help the younger children and, in that way, learn more about how they themselves can better cope. The teens often form relationships with one another that go beyond the program.
Parents are sometimes reluctant to bring children to a program such as this. They may be concerned about scaring their children, or worried that attending will thwart their efforts to keep things as "normal" as possible, to not focus on the cancer. More often than not, these concerns are unfounded. Given the skill of the clinicians and their understanding of child development, the atmosphere created at "Kids Count Too!" is one of support and fun, and there is no expectation that the children necessarily talk about their parents' cancer.
While the wish to keep life normal and routine for children is fully supported at The Wellness Community, it is also important for families to give children a time and place to talk about the changes that are happening, without children being worried that they will upset someone. In the same way that a support group is not the right thing for every person with cancer, "Kids Count Too!" may not meet the needs of every family. However, the program is available to help parents to find a way to open up the conversation with their children at a developmentally appropriate level, in a way that supports both the children's and the family's resilience.
In addition to the ongoing programs, The Wellness Community co-sponsors an annual conference for school personnel entitled "When a Parent Has Cancer: Strengthening the School's Response." At this conference, teachers, school nurses and guidance counselors gather to learn more about cancer and the psychosocial issues for children and families, and how to best offer support. This year the conference will take place on March 27, 2006 at the Massachusetts Medical Society.
Staff at The Wellness Community is available for consultation to pediatricians on how to refer families to "Kids Count Too!" and on the wide range of other programs and services for cancer patients and their families. For more information about The Wellness Community - Greater Boston, located at 1039 Chestnut Street, Newton, MA 02464, go to www.wellnesscommunity.org, or call 617 332-1919. For information about other Wellness Communities in the U.S. and abroad, go to www.thewellnesscommunity.org.
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I would like to thank the following for their generous support, without whom this web site and training program would not exist: The Sidney R. Baer, Jr. Foundation, The Alden Trust, the Commonwealth of Massachusetts Department of Mental Health, Project INTERFACE (Newton Public Schools and the U.S. Department of Education), the Locke Educational Fund at Newton- Wellesley Hospital, Aetna Health Plan, the Kenneth B. Schwartz Center, and the families of my medical practice.
I hope you find this site useful and encourage any comments.
- Dr. Howard King, M.D.