“Teens are at the threshold of life, increasingly separating from parents, developing close peer and romantic relationships, and thinking about the future — about thing like college and jobs. But when confronted with a life threatening diagnosis, along with that diagnosis comes the often need to surrender a growing independence and rely upon their parents once again,” said Melissa Carpentier, Ph.D., assistant professor of pediatrics at the Indiana University School of Medicine and associate member of the Indiana University Melvin and Bren Simon Cancer Center. Dr. Carpentier is a psychology researcher who studies the quality of life and health behaviors of adolescents treated for cancer.
“Unfortunately, teens are often lumped together with children when we consider the psychological effects of cancer, but they differ in many aspects from children and really should be focused on as a distinct group. We need to take teens’ unique perceptions into account and listen to what they are struggling with,” Dr. Carpentier says.
The teenage years are a time of hormonal and physical changes, a shift from dependence on parents to greater reliance upon peers, as well as the development of dating and sexual relationships as teens transition to adulthood. According to Dr. Carpentier, little research has been done on how peer and romantic relationships in teens with cancer affect critical outcomes such as quality of life.
The teenage years can also be a time of experimentation with behaviors such as smoking, drinking, and sex. Many teens also struggle with issues related to body image – am I too fat? Am I too thin? Is my acne noticeable? Teens with cancer are burdened with these pressures and concerns and much more. Dr. Carpentier says that it is important for the medical team, as well as parents, to convey to the teen with cancer that they understand and empathize with what he or she is going through.
Teens, especially older ones, are accustomed to having increased control and independence in their lives. Cancer largely robs them of this newly experienced freedom, and may cause friction between the teen and his or her parents. Yet even if they are resistant to parental guidance, Dr. Carpentier says teens do need parental help to make decisions which impact their future and which may be especially difficult for a teen to consider, such as future fertility. This is particularly important as cancers which involve the male and female reproductive organs are among the most common in teen cancer diagnoses.
Dr. Carpentier advises parents to engage in clear, straight forward communication and include teens with cancer as important partners in their medical treatment. This includes providing teens with cancer with choices whenever possible in order to maintain some sense of independence and control during a difficult time period. As examples, Dr. Carpentier suggests consulting with the teen on decisions presented by the medical team to the family such as preferred time of day to receive chemotherapy or allowing the teen to decide whether to wear a hospital gown or something more creative. She says this provides teens with some sense of normalcy during what may otherwise be a particularly dependent stage in their lives.
In her study of 39 teens diagnosed with cancer, approximately 40 percent were involved in a dating relationship. While she didn’t follow them long-term to see what happened to the relationship – did it continue or did it disintegrate – Dr. Carpentier did find that aspects of those dating relationships, such as level of support, conflict, and anxiety, were significantly related to teens’ quality of life, distress, and engagement in healthy versus unhealthy behaviors.
“We saw that those teens with cancer who reported more positive dating relationships were in a better place overall than those teens who did not have such positive relationships,” Dr. Carpentier said.
Dr. Carpentier and Larry Mullins, Ph.D., of Oklahoma State University, are the authors of Adolescents With Cancer: The Influence of Close Relationships on Quality of Life, Distress, and Health Behaviors, a new book targeted to physicians, psychologists, social workers and others who treat teens with cancer.
“I study teens and their relationships with peers and romantic partners because understanding these relationships may provide us with critical information on how best to help teens deal with their cancer and its impact on their lives and the lives of those who surround them. Little work has been done in this area, despite the fact that the teen years represent one of the most challenging developmental periods and such challenges are likely to be magnified tremendously when you add in a diagnosis of cancer,” she said.
In her next study, Dr. Carpentier plans to focus specifically on teen and young adult testicular cancer patients and their romantic partners to learn how testicular cancer impacts relationships, sexuality and fertility in the years following diagnosis and treatment.