Stigma and social support and their impact on quality of life and self-esteem among women with endometriosis in Latin-America and the Caribbean

Abstract

Endometriosis is a complex disease affecting approximately 5–10% individuals worldwide. Prevalence rates in Latin-America and the Caribbean are largely unknown, with published data only from Puerto Rico and Chile. Pain associated with endometriosis negatively affects patients’ health and quality of life. However, there is a need to better understand the role played by psychosocial variables such as stigma and social support in diverse cultural contexts. The purpose of this study was to examine the mediating role of endometriosis related stigma (endo-stigma) and the moderating role of social support on the endometriosis QoL and self-esteem among women with endometriosis from Latin America and the Caribbean. A cross-sectional design with online survey techniques was implemented. A total of 169 self-identified cisgender women with endometriosis from 14 Latin-American and Caribbean countries participated in the study. We used partial least squares structural equation modeling (PLS-SEM) to examine the study’s hypotheses. Incapacitating pain was positively and significantly related to endometriosis QoL as measured by the EHP-5 (b = .266, p < .01). Endo-stigma was positively and significantly related to endometriosis QoL (b = .340, p< .01) and self-esteem (b = .297, p< .01). In addition, endo-stigma mediated the relationship between incapacitating pain and self-esteem (IE = .073, p = .018). Finally, social support moderated the relationship between stigma stress and endometriosis QoL (b = .060, p = .039). Findings suggest stigma could be one of the mechanisms through which the relationship between incapacitating pain and self-esteem among Latin American and Caribbean women with endometriosis could be partially explained. Furthermore, women who scored high in the need for social support and stigma stress also showed worst endometriosis QoL. These results point towards the need to develop tailored interventions targeting these factors in order to foster a better QoL and wellbeing for this population in the context of Latin America and the Caribbean.

Endometriosis in the era of precision medicine and impact on sexual and reproductive health across the lifespan and in diverse populations

“…However, there is a lack of awareness about endometriosis among patients and providers influenced by societal and cultural normalization of pain in women and stigma surrounding menstrual cycles 120 . This may lead to underreporting, especially among underrepresented racial and ethnic minorities and those of lower socioeconomic status 121,122 …”

Stigma and mental health in endometriosis

“…People viewed them as “changuería”, a term used to label someone as a whiner or complainer without an apparent reason. Matías-González and colleagues [41] sought to understand stigma in endometriosis quantitatively and found that endometriosis stigma was associated with higher endometriosis symptomatology, as well as lower quality of life and lower self-esteem in Latin American and Caribbean patients.…”

“…Respondents rate their agreement with statements such as “Because of my illness, some people avoided me,” on a Likert scale. Matías-González and colleagues used the 8-item short form of this scale and adapted it to the endometriosis population [41] . Adapting the full version of the SSCI to the endometriosis population will allow for a more nuanced understanding of how the different levels of stigma affect patients.…”

Academic Coverage of Social Stressors Experienced by Disabled People: A Scoping Review

“…"Stigma stress" is used in relation to other marginalized groups. Tools such as stigma stress scales [74][75][76]235] and stress impact scales [236] have language that could be modified to fit disabled people to investigate stigma stress disabled people experience in general but also in specific areas. These scales could be used to generate surveys that could be used as learning tools to become knowledgeable on stigma stress, and such scales could be used to investigate the perception of stigma stress experienced by disabled people.…”