Innovate for Good: Associate professor receives grant to use game-based intervention to curb endometriosis stigma

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Jhumka Gupta, associate professor at Mason’s College of Public Health, received an $800,000+ U.S. Department of Health and Human Services grant to examine the impact of game-based intervention to reduce the stigma of chronic pelvic pain and endometriosis. 

 

Although one in 10 women of reproductive age in the United States experience the painful and debilitating symptoms of endometriosis, there are few resources available to provide adolescents and parents with tools for navigating life with this disease. Symptoms of endometriosis and chronic pelvic pain often begin during adolescence, yet diagnostic delays range from 7-10 years. The painful symptoms of endometriosis can lead to disruptions in social, family, work, and academic lives.  

In addition, the social stigma of discussing menstrual health and pelvic pain inhibits adolescents from discussing their symptoms or seeking treatment; parents and others also hold stigmatizing attitudes towards menstruation, pelvic pain, and endometriosis and are therefore unable to provide optimal social support to adolescents who navigate this condition. Undiagnosed endometriosis and toxic stress due to stigma can harm adolescents throughout childhood, adolescence, and later in life, including their maternal health. 

Jhumka Gupta, associate professor at Mason’s College of Public Health, will lead a three-year $875,680 grant from the Office on Women’s Health within the U.S. Department of Health and Human Services to examine the impact of SurrEndo, a game-based intervention to reduce societal stigma encountered by young women with chronic pelvic pain or endometriosis. Anna Pollak, associate professor of Public Health, and Bethany Letiecq, an associate professor in Mason’s College of Education and Human Development, are co-investigators.  

“The challenges of living with endometriosis are often minimized and normalized by health care workers, friends, and family, which creates a stigma that prevents adolescents from receiving social support and therefore harms mental health,” said Gupta. “Immersive game-based interventions have the potential to address such stigma by allowing parents and other family members to walk in the shoes of an adolescent with endometriosis.  

“With gameplay, they can learn how to be supportive through role-playing and seeing the impact their decisions have on an adolescent with endometriosis as they experience disruptions in school, with their friends, dating, and at the clinic. Adolescents can also learn about self-advocacy and how to seek support. This in turn will translate into less stigma, more support, and improved mental health.” 

Researchers will work with Gaming Revolution for Development, a serious gaming firm with the mission of using games to propel social change, in developing the serious gaming intervention. The study will also be guided by community partnerships, including EndoBlack, Inc., a Black-women-led organization advocating for African American women and women of color affected by endometriosis. 

With partners at INOVA, Gupta and her team will recruit adolescent patients and their parents to take part in the intervention study and examine changes in perceived social support received from family, self-efficacy in coping, anticipated stigma, and emotional distress among adolescents.  

Innovate for Good is an ongoing series that examines how Mason faculty in the College of Public Health are harnessing technology to improve health outcomes. 

If you have stories to share as part of the Innovate for Good series, email Mary Cunningham at mcunni7@gmu.edu