Social environment, which includes factors surrounding peers, family, and school, significantly influences young people’s perception of endometriosis, as well as girls’ emotional health and ability to seek help, a study conducted with teens living in New York City found.
These findings reflect a need to educate and inform adolescents, families, peers, schools, and health experts on endometriosis, as well as reducing stigma associated with the disease and making sure support networks are in place for young girls who may be affected by symptoms.
The study, “How do adolescent girls and boys perceive symptoms suggestive of endometriosis among their peers? Findings from focus group discussions in New York City,” was published in the journal BMJ Open.
Endometriosis can negatively impact several aspects in the lives of women and girls. The associated symptoms affect their daily lives, such as mobility, sleep, and emotional (depression and anxiety) and social (isolation and missed social activities) health.
Most studies have focused on clinical and surgical outcomes, and not much is known about the effect of these debilitating symptoms among adolescent girls. The impact of social context, including factors involving family, peers, and community, on health and health-seeking behaviors has been especially neglected in these studies.
In this study, researchers from different U.S. universities conducted group discussions with an ethnically diverse group of teens living in New York City to understand how endometriosis and symptoms suggestive of the disease are perceived at different social levels.
The study included 54 girls and boys between 14 and 18 years old. Data from the discussions was collected using four vignettes, each centered on a girl with specific endometriosis symptoms in a social situation, from which 15 themes emerged that influence the perception of endometriosis among adolescents.
These themes were then grouped into main factors affecting perception of endometriosis at different social levels. For example, factors affecting the community/society, peer/school, and family levels included stigma, gender norms, lack of endometriosis knowledge, and distrust of healthcare providers; factors affecting the individual level included painful bowel movements, painful sex, heavy bleeding, passing out, and emotional, social and educational costs.
One of the themes debated in the focus group discussions was lack of training among school personnel. “Certain diseases have certain symptoms and you can’t just tell by looking, you have to really dig into it to find out what the person has and talk with the person,” a male adolescent said. “But, in most cases [the nurse] just checks you for your, maybe blood pressure, fever, the temperature and if these are ok, then they probably just think you’re fine.”
Another important issue that arose is the girls’ distrust of healthcare providers. “I would be embarrassed to tell the doctor because, I know doctors and stuff, and they go home, and they might say, ‘I had a patient, and she told me something is wrong with her pooping all the time [laughter].’ I don’t want to share, because [the doctor] is gonna share with other people,” a girl said.
These findings show how important social context is both in how it affects adolescents’ perceptions of endometriosis symptoms, as well as girls’ emotional health and help-seeking capability.
“Findings underscore the importance of understanding the social environment of girls experiencing symptoms suggestive of endometriosis and educating and engaging their peers, family and school personnel to create a supportive, informed social climate,” the researchers concluded.
“Efforts should specifically include stigma reduction campaigns targeted towards female and male adolescents,” they also said.