Setting and achieving goals is a significant milestone in adolescent and young adults’ (AYA) development that paves the way for independence in adulthood. Teens with cancer often experience fatigue, pain, and other symptoms that can interfere with these personal goals, which psychologists refer to as health-related hindrance (HRH).
Researchers at the Center for Childhood Cancer Research at The Children’s Hospital of Philadelphia are interested in identifying those most at risk for higher HRH because it is a potential marker of poor psychological adjustment during cancer treatment and into survivorship. One of their studies that appeared in the March issue of the Journal of Clinical Psychology in Medical Settings focused on the interaction between race, ethnicity, and income in predicting HRH.
“This is one of the first studies to look at the psychosocial components of lower income and ethnic minority status on quality of life outcomes,” said Lauren C. Daniel, PhD, a psychology fellow in the division of oncology at CHOP.
Ninety-four study participants between the ages of 13 and 19 were categorized into four groups: lower income minority status, higher income minority status, lower income white, and higher income white. On average, it was 1.65 years since their initial diagnosis, and the majority had received chemotherapy.
The study participants wrote down up to 10 personally meaningful goals. Some examples included spending more time with friends and getting into a good college. Participants rated the difficulty and importance of the goal as well as the impact of pain, fatigue, and other symptoms on achieving each goal.
The research team examined differences in goal-related variables across the four groups, and their findings were not what they had anticipated. Based on previous research on health care disparities, they had hypothesized that adolescents with cancer of minority status living in lower income families would experience the highest amount of HRH. The results showed the opposite: Lower income minority patients had the least amount of HRH, while high income minority patients had the most.
“It may be that higher income minority families are in schools with higher expectations so patients may be more aware of the impediments that cancer poses,” Dr. Daniel said.
On the flip said, the researchers suggested that those adolescents with cancer in the lower income minority groups may rely on a “shift and persist” adaptive coping style that increases their resilience and persistence toward valued goals.
“This study highlights that goal setting may be different across patient populations,” Dr. Daniel said. “Their goals also might be different than what clinicians are expecting. So it’s important for them to talk with patients about things that they want to achieve, especially understanding how fatigue, pain, and symptoms impact their goals.”
During these conversations, clinicians can work with AYA to set realistic goals in the context of cancer to help motivate them to look toward the future. They also can connect them with organizations that offer information and support or scholarships and financial aid. At CHOP, many unique resources are available for AYA who are on and off treatment.
A larger scale study across multiple centers is needed to fully understand these preliminary findings and further explore the impact of sociodemographic factors on HRH.
“We’re hoping to work toward implementing interventions to improve health-related hindrance as an important part of quality of life of AYA with cancer,” Dr. Daniel said.
This study was part of a larger study on developmental outcomes of AYA with cancer by Lisa A. Schwartz, PhD, assistant professor of clinical psychology in pediatrics at CHOP and the psychologist for the Cancer Survivorship Program. Lamia P. Barakat, PhD, a CHOP psychologist, and Lauren D. Brumley, also contributed to the study.