Adults are conveying their personal experience with serious disease online in ever-increasing numbers, but do such chronicles help the authors or their audience? In the first known study of its kind, UCLA researchers have discovered that for women diagnosed with breast cancer, creating a personal website to chronicle the experience and communicate with the author’s interpersonal circle can reduce depressive symptoms, increase positive mood and enhance appreciation for life.
Published online ahead of print today in the Journal of Clinical Oncology, the study was led by Dr. Annette Stanton, member of the Jonsson Comprehensive Cancer Center and professor of psychology and psychiatry/biobehavioral sciences.
“From our own and others’ previous research, we know that expressing emotions surrounding the cancer experience and gaining social support can be helpful for people diagnosed with the disease, and we know that interpersonal interventions can be useful,” Stanton said. “Our goal in this research was to provide a platform on which breast cancer survivors could reflect on their experiences, as well as communicate with and leverage support from their existing social networks, especially friends and family.”
Stanton launched Project Connect Online (PCO), a randomized trial conducted with 88 breast cancer survivors. She and her colleagues led three-hour workshops in which women created personal websites. Women randomly assigned to the control group were offered the workshop six months later. All participants completed standard measures of psychological status before being assigned to their respective groups and six months after selection.
In the PCO workshops conducted with small groups, participants learned about potential uses for the websites, such as expressing emotions related to cancer, providing medical status updates and letting others know what would be helpful. The women also proactively considered common concerns of website authors, including the pressure to be positive or eloquent. They then engaged in hands-on website creation and at the end of the three-hour sessions had created their websites and authored their first posts.
“We worked closely with a website developer so participants had several choices for how their sites looked, but all sites had the same functions,” Stanton said. “It was inspiring to see women of so wide an age range (28 to 76 years old) and of such varied computer experience develop their websites in just a few hours.”
The women also found their websites were particularly valuable for telling the stories of their cancer experiences, expressing emotions and reducing how much information they had to repeat for family and friends. Visitors to the websites found them useful for providing updates on the authors’ health and for helping visitors feel emotionally close to authors.
Participants also demonstrated statistically significant improvement in depressive symptoms, positive mood and life appreciation. The effects were particularly strong for women in active medical treatment, most of whom had advanced (metastatic) disease. Women are more often motivated to tell their stories, express cancer-related emotions, garner support and keep others informed during active medical treatment than those who have completed their medical treatments for cancer.
“We are encouraged by these positive findings, especially for cancer survivors with the most need, and those in active medical treatment or with more advanced disease,” Stanton added. “Our next step is to gain support for a larger test of Project Connect Online.”
This research was supported by the Susan G. Komen for the Cure Foundation, the Breast Cancer Research Foundation and the National Institutes of Health.
UCLA's Jonsson Comprehensive Cancer Center has more than 240 researchers and clinicians engaged in disease research, prevention, detection, control, treatment and education. One of the nation's largest comprehensive cancer centers, the Jonsson center is dedicated to promoting research and translating basic science into leading-edge clinical studies. In July 2013, the Jonsson Cancer Center was named among the top 12 cancer centers nationwide by U.S. News & World Report, a ranking it has held for 14 consecutive years. For more information on the Jonsson Cancer Center, visit our website at http://www.cancer.ucla.edu.