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How Do Adolescent Girls and Boys Perceive Symptoms Suggestive of Endometriosis Among Their Peers? Findings from Focus Group Discussions in New York City

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How Do Adolescent Girls and Boys Perceive Symptoms Suggestive of Endometriosis Among Their Peers? Findings from Focus Group Discussions in New York City Open Access Research BMJ Open: first published as 10.1136/bmjopen-2017-020657 on 4 June 2018. Downloaded from How do adolescent girls and boys perceive symptoms suggestive of endometriosis among their peers? Findings from focus group discussions in New York City Jhumka Gupta,1 Lauren F Cardoso,2 Courtney S Harris,1 Arielle D Dance,3 Tamer Seckin,4 Nina Baker,4 Yvonne O Ferguson5 To cite: Gupta J, Cardoso LF, ABSTRACT Strengths and limitations of this study Harris CS, et al. How do Objective Symptoms of endometriosis, including pelvic adolescent girls and boys pain, back and nerve pain, and gastrointestinal pain, often ► This is the first study to examine how social con- perceive symptoms suggestive begin in adolescence. Yet, research on the experience of endometriosis among text may impact the social, educational and medical of these debilitating symptoms among young people is their peers? Findings from experiences of adolescent girls with symptoms sug- scarce. Of particular concern is the influence of adolescent focus group discussions in gestive of endometriosis. girls’ social context. This study qualitatively examined New York City. BMJ Open ► Focus groups with an ethnically diverse sample of how, among adolescents, endometriosis and symptoms 2018;8:e020657. doi:10.1136/ adolescent girls and boys residing in New York City suggestive of endometriosis is perceived at the family, bmjopen-2017-020657 allowed for capturing diverse perspectives on per- peer/school and community/society levels. Prepublication history and ceptions of endometriosis. ► Design Eight focus groups were conducted; vignettes additional material for this ► The use of vignettes facilitated conversation on a were used to elicit participants’ perceptions of factors that paper are available online. To stigmatised health issue. may shape girls’ experiences of endometriosis. Data were view these files, please visit ► The main limitation is that the study used a con- analysed using constant comparison analysis. the journal online (http:// dx. doi. venience sample of adolescents recruited through org/ 10. 1136/ bmjopen- 2017- Participants An ethnically diverse sample of girls and non-profit leaders and teachers with an interest in http://bmjopen.bmj.com/ 020657). boys ages 14–18 (n=54) residing in New York City. the topic, which may have biased the sample to- Results Fifteen themes emerged and were distilled to wards participants with more willingness to discuss Received 15 November 2017 eight cross-cutting factors that influence perceptions of topics related to women’s health. Revised 21 February 2018 endometriosis at different levels of the ecological model: Accepted 20 April 2018 distrust of community healthcare providers, societal stigma of menstruation, peer stigma of endometriosis symptoms, distrust of school healthcare providers, lack 7.4 million women.3 Symptoms of endometri- of endometriosis knowledge among peers and school osis may include painful, heavy or irregular personnel, inequitable gender norms, invisibility of menstruation; bowel and urinary disorders; on September 30, 2021 by guest. Protected copyright. symptoms and the stigma of teen sex among parents. 1 back and pelvic pain; dyspareunia; nerve pain Department of Global and Further, these factors may compound symptoms’ impact 4–8 Community Health, College of on individual girl’s social, educational and emotional well- and infertility. Endometriosis has been Health and Human Services, being. documented to adversely impact multiple George Mason University, Conclusions Findings underscore the importance of aspects of women and girls’ lives. Symptoms Fairfax, Virginia, USA 2 understanding the social environment of girls experiencing diminish physical functioning (eg, mobility, School of Social Policy 9–11 symptoms suggestive of endometriosis and educating sleep), emotional well-being (eg, depres- and Practice, University of 5 12 13 Pennsylvania, Philadelphia, and engaging their peers, family and school personnel to sion and anxiety) and social well-being Pennsylvania, USA create a supportive, informed social climate. Efforts should (eg, social isolation and missed social activi- 3College of Integrative Medicine specifically include stigma reduction campaigns targeted ties).14–16 Women have also reported educa- and Health Sciences, Saybrook towards female and male adolescents. tional and professional disruptions17 with one University, Oakland, California, study estimating an average of 19.3 missed USA 18 4Endometriosis Foundation of work days annually. Lost wages, coupled America, New York, USA INTRODUCTION with healthcare expenses, result in a substan- 5GetQualitative, Washington Endometriosis, a chronic condition charac- tial economic burden on women.18 DC, USA terised by cells similar to the uterine lining Diagnostic delays, stigma and lack of 1 Correspondence to that exist outside of the uterus, is estimated support collectively contribute to the toll Dr Jhumka Gupta; to impact 10% of women of reproductive endometriosis has on quality of life and jgupta4@ gmu. edu age.2 In the USA, that approximates to some social, emotional and economic well-being. Gupta J, et al. BMJ Open 2018;8:e020657. doi:10.1136/bmjopen-2017-020657 1 Open Access BMJ Open: first published as 10.1136/bmjopen-2017-020657 on 4 June 2018. Downloaded from Time to diagnosis ranges from 2 to 12 years, and can be New York City (NYC). Vignettes were used to explore three times longer for women whose onset of symptoms perceptions of symptoms suggestive of endometriosis, occurred during adolescence.10 29 20 Such delays can be how these symptoms may impact different aspects partially attributed to the health sector’s inadequacy in of girls’ lives and help-seeking opportunities. The addressing endometriosis. Women commonly report that vignettes and discussion questions were also designed to prior to diagnosis doctors have minimised, normalised or examine perceptions of endometriosis at family, peer/ dismissed their symptoms4 21–23 and have inappropriately school and community/societal levels43 to elicit factors referred or misdiagnosed them.15 24 Beyond the health- that potentially shape girls’ experiences of endometri- care sector, interactions with partners, family members, osis symptoms. friends and other elements of a woman’s social context can influence diagnostic delays and the support received. Participants For instance, when partners trivialise symptoms, women The research was conducted in collaboration with a are less willing to seek help,25 although supportive part- NYC-based non-profit organisation focused on endo- ners can be an integral source of care.22 26 27 The broader metriosis advocacy. Programme staff sent an initial family environment further shapes women’s experi- email introducing the study to NYC public school and ences with endometriosis. Qualitative research has also community-based organisation (CBO) administrators found that familial cultural norms can require women in their network, with purposeful focus on schools to ‘endure’ and keep pain private, and that increased and CBOs with diverse ethnicities and socioeconomic household resources can improve women’s agency in backgrounds. Interested administrators were then help-seeking.23 More broadly, social norms consider sent materials on study procedures and required NYC menstruation as something to conceal.25 28 These norms Department of Education (DOE) documentation. are sustained by the actions of men and women in social, Administrators of participating CBOs introduced the professional and medical spheres, thus further discour- study to all eligible participants. At NYC schools, a health aging women from seeking help. teacher announced the opportunity to take part in a study Despite growing recognition that endometriosis symp- on perceptions of menstrual health to all eligible students toms often begin in adolescence, research with adoles- in their class or afterschool group. Eligible participants cent populations is scarce. The few existing studies have were ages 14–18, English speaking and cognitively abled largely focused on clinical/surgical outcomes,29–33with at the high-school level. little attention to social context. One notable exception Eight FGDs were conducted, five with girls (n=38) is the Menstrual Disorder of Teenagers study, which inves- and three with boys (n=16). Half of the FGDs took place tigates menstrual disorders, including endometriosis, in NYC public schools and the other half took place in but does not examine perceptions of symptoms or the NYC-based CBOs. http://bmjopen.bmj.com/ social context within which they are experienced.34 The social influence of peers, family and community on Vignettes health and help-seeking behaviours during adolescence Four vignettes were used to elicit participants’ has been well-documented for numerous adolescent perceptions of the experiences of girls with endome- health issues (eg, dating violence,35 obesity,36 substance triosis-like symptoms. Due to low awareness of endo- use,37 38 sexual risk39). Adolescence is a period of devel- metriosis, menstrual stigma and the study’s focus on opmental transition when young people are particularly adolescents, vignettes were used for facilitating FGDs. 40 affected by contextual influences, thus understanding Vignettes are recognised as an effective means to stim- on September 30, 2021 by guest. Protected copyright. how adolescents view endometriosis, including the mani- ulate group discussion around sensitive/stigmatised festation of such symptoms among
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