The moment you’re told the dreaded words: “You have cancer,” your life changes forever. A parent diagnosed with cancer goes through a rollercoaster of emotions from guilt and shame to resiliency.
“Many African American families are run by single moms, whose diagnosis brings feelings of shame.”
Children of Black single-parent households whose parents are diagnosed with cancer also felt a range of emotions from guilt and resentment to apathy.
“They felt guilty watching their parents struggle or resentful because they couldn’t be regular teenagers; they wanted to hang out with friends but also understood their parents needed their support,” Harmon said. “Others would just suppress feelings of pain.”
These crucial discoveries came in a series of attachment-based family intervention therapy sessions designed by University of Delaware Health Behavior and Nutrition Sciences Professor Adam Davey, who has long wanted to see interventions that address the psychosocial needs of African American patients with cancer and their families.
“Too often, the focus is so squarely on the patient because of the gravity of the illness,” Davey said. “But at the same time, a cancer diagnosis has a tremendous ripple effect on the family system.”
The work has been a testament to Davey’s patience and resilience. He’s been recruiting research participants for this study for more than a decade, years before he came to UD’s College of Health Sciences. His initial study criteria included African Americans who were non-Hispanic, diagnosed with stages 0-3 cancer, and had kids aged 12-18.
“It was like searching for a needle in a haystack,” said Davey, a research methodologist who’s invented best practices when necessary. “I had never had an experience like this, and it rocked my world.”
Information about everyone who has a cancer diagnosis is added into a tumor registry, but there’s no information about the family characteristics of these individuals.”
He would send 1,000 emails that generated, on average, two responses from eligible study participants.
“We found out more about characteristics of women with breast cancer in Morocco than women in the U.S. or any developed western nation,” Davey said. “Information about everyone who has a cancer diagnosis is added into a tumor registry, but there’s no information about the family characteristics of these individuals.”
Davey turned to a nationally representative dataset to determine why the people he sought were so hard to find. He and health behavior science and promotion doctoral student Charlotte Asiedu recently reviewed pooled data from 2004 to 2015 from the National Health Interview Study to compare characteristics of cancer survivors with and without minor children and differences by sex and race/ethnicity among survivors with minor children. Their review was recently published in the journal Cancer Medicine.
That review of 360,000 cancer survivors confirmed for Davey that he wasn’t missing people. The review found fewer than 88 people nationally, across 12 years, clearly fit the initial study criteria.
“If they’re not out there, we can’t find them,” Davey said. “This helped us understand which problem we were trying to address.”
The experience has taught Asiedu to look critically at designing study criteria.
“We encountered so many challenges, and as a growing researcher, I’ve been able to step back and really examine why something isn’t working,” Asiedu said. “This nationally representative dataset gave us the insight we needed to move forward.”
Davey ultimately expanded study criteria to include African Americans and Hispanics with diagnoses from 12 to 24 months and children aged 11 to 21 along with hematological cancers. He then found a handful of families eligible to participate who could benefit from the interventions he designed.
“Adolescence is a challenging enough time, but it’s also a time of vulnerability to the negative consequences of parental illness,” Davey said. “Interventions that exist were developed for predominantly white, upper-middle-class families. There was nothing tailored for African Americans with cancer and their families.”
Harmon points to another challenge in designing this study.
“With African Americans, you must factor in the lack of trust for the system,” Harmon said. “There are disparities in the way African Americans are treated, and that was difficult for us to overcome.”
Families attend five group therapy-style sessions via Zoom every other week for eight weeks. The sessions, supervised by Harmon and led by a team of experienced African American therapists, allow parents and teens to share experiences and vulnerabilities and aim to relieve adolescent symptoms of anxiety and depression that often accompany a parent’s cancer diagnosis.
Asiedu said the intervention has proven successful, especially for children.
“Children have told us these interventions helped them learn how to support their parents through cancer treatment,” Asiedu said.
Harmon has seen the intervention help parents, too.
“Parents have been so grateful that finally someone was willing to listen to them share their stories,” Harmon said. “They saw these sessions as a trusted source of healing. The greatest outcome for me was fictive kinship and faith. For the Black family, it really is about us working together.”
In addition to forging stronger and more resilient relationships among families by equipping parents with effective communication strategies and relieving anxiety symptoms in children, Davey hopes his research can also inform clinical practice.
“These results can help providers remember that cancer patients are individuals embedded within family contexts and that family can both support and challenge adherence to clinical practice,” Davey said. (Newswise/TAB)
