By Jiaxi Zhang
Endometriosis is a disease in which tissue similar to the lining of the uterus grows in other places in the body, according to the Eunice Kennedy Shriver National Institute of Child Health and Development. Symptoms may begin during adolescence and can include painful periods, pelvic pain, and pain during sex. Even though the disease is estimated to impact 10% of women and girls of reproductive age, very little is known regarding public perceptions of this disease.
A CHHS study published in BMJ Open sought to explore how social context may influence the support that friends, family members, school personnel, and medical professionals provide to adolescent girls who experience symptoms suggestive of endometriosis.
Dr. Jhumka Gupta, CHHS assistant professor of global and community health, with Courtney S. Harris, a Master of Public Health alumna, and colleagues, conducted the study that qualitatively examined teens’ perceptions of endometriosis and how girls’ social environment may affect their experience of endometriosis symptoms.
Gupta and colleagues conducted eight focus groups with 54 teenagers from New York City. With patient input, the researchers developed vignettes that depicted how endometriosis symptoms might manifest in various social situations. The study participants were asked to discuss their perceptions of the symptoms, as well as impacts on girls’ experiences of endometriosis.
“We know from research on other pressing adolescent health concerns that the social influence of peers, family and community plays an important role in the health and help-seeking behaviors. However, prior to this study, there has been no research on adolescent social context and endometriosis.” Gupta said.
This study found that factors in different spheres of a girl’s life may contribute to her experiences of endometriosis. For example, at the societal level, the stigma associated with menstruation, which deems it shameful and uncomfortable to discuss, may prevent help-seeking for girls suffering from endometriosis symptoms. In the school context, health personnel were perceived to lack the specialized training needed to support girls with symptoms of endometriosis, while peers may perceive such symptoms as exaggerated. Finally, within dating relationships, the study found that inequitable gender norms may compel girls to conceal their symptoms and endure pain for fear of social repercussions.
“The current study has important implications for future research and public health programming directions for endometriosis among teenagers,” stated Harris.
“We found that, in order to help teenage girls with endometriosis-related issues, the public health field must challenge social norms and stigma while providing education to teenagers, their families, schools, and health care givers about the disease and its symptoms,” Gupta pointed out.
As a next step, Gupta and her team are developing a gaming-based intervention to increase social support for endometriosis that addresses stigma and gender norms.
A research brief on the study is also available.