Adults increasingly are conveying their personal experience with serious disease online, but do such chronicles help the authors or their audience? In the first known study of its kind, UCLA researchers have discovered that creating a personal website to chronicle the cancer experience and communicate with the author’s interpersonal circle can reduce depressive symptoms, increase positive mood, and enhance appreciation for life in women diagnosed with breast cancer. Published online ahead of print in the Journal of Clinical Oncology, the study was led by Annette Stanton, member of the Jonsson Comprehensive Cancer Center and professor of psychology and psychiatry/biobehavioral sciences.
Explaining the impetus for the study, Stanton said, “From our own and others’ previous research, we know that expressing emotions surrounding the experience and gaining social support can be helpful for people diagnosed with cancer, and we know that interpersonal interventions can be useful.” However, most interpersonal interventions to promote quality of life in adults diagnosed with cancer involve the patient’s partner, primary caregiver, or other cancer patients. “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 said. “The idea for this trial really took off when I met two sisters who had created personal websites for each other when each was diagnosed with cancer.”
In Project Connect Online (PCO), a randomized trial conducted with 88 breast cancer survivors, Stanton and 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, women learned about potential uses of the websites, such as expressing emotions related to cancer, providing medical status updates, and letting others know what would be helpful. 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. According to Stanton, “We worked closely with a website developer so participants had several choices for how their sites looked, but all sites had the same functions. 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 assigned to PCO found their websites 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. The women in PCO 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 and the often unpredictable course of metastatic disease than those who have completed their medical treatments for cancer. “We are encouraged by these positive findings,” Stanton said, “especially for cancer survivors with the most need, those in active medical treatment or with more advanced disease. Our next step is to gain support for a larger test of Project Connect Online.”
Project Connect Online: Randomized Trial of an Internet-Based Program to Chronicle the Cancer Experience and Facilitate Communication, Annette L. Stanton, Elizabeth H. Thompson, Catherine M. Crespi, John S. Link and James R. Waisman, Journal of Clinical Oncology, Published online before print August 12, 2013, doi: 10.1200/JCO.2012.46.9015
This research was supported by the Susan G. Komen for the Cure Foundation, the Breast Cancer Research Foundation and the National Institutes of Health.