ABSTRACT
Given the limitations of medical treatment for endometriosis, self-management is a critical component of symptom management, and providing patients with information and education is a necessary complement to medical interventions. Though 50 to 70% of people with endometriosis experience dyspareunia (painful sex), there is limited knowledge of self-management specific to painful sex. A comprehensive understanding of the self-management strategies used is foundational to developing supportive care interventions that help ease pain and related psychosocial sequelae. The objective was to describe people's experiences of navigating endometriosis-associated painful sex and developing self-management strategies. We analyzed interview data from 20 women using constant comparative and thematic analysis techniques, guided by qualitative interpretive description methodology. Participants (age range 18-44 years) all identified as women and were predominately Caucasian (90%) and heterosexual (80%). Throughout their lives, the women appeared to gradually develop self-management strategies while navigating painful sexual experiences. This complex journey encompassed four phases: 1) viewing painful sex as normal, 2) experiencing evolving thoughts and emotions, 3) coming to understand painful sex and seeking help, and 4) learning strategies to navigate painful sex, these include preparing mentally and physically for sex and communicating with intimate partner(s). Women in this study developed self-management strategies over time through engagement with others who understood their challenges. Future research is warranted regarding initiatives to counter the normalization of painful sex, develop and disseminate patient-facing information, provide education specific to dyspareunia, improve access to multidisciplinary care, facilitate social connections and support, and enhance communication with intimate partners. PERSPECTIVE: In this paper, we report on the experiences of women with endometriosis-associated painful sex and their self-management strategies. Clinicians may be interested in a qualitative exploration of endometriosis-associated painful sex as they seek to further understand their patient's experiences and what strategies can be implemented to alleviate dyspareunia. DATA AVAILABILITY: The data sets generated during and/or analyzed during the current study are not publicly available as participants did not consent to making their data publicly available but are available from the corresponding author on reasonable request.
ABSTRACT
BACKGROUND: The Engage Study is a longitudinal biobehavioral cohort study of gay, bisexual and other men who have sex with men (GBM) in Toronto, Montreal, and Vancouver. Baseline data (2,449 participants) were collected from February 2017 - August 2019 using respondent-driven sampling (RDS). Recruitment in Montreal required fewer seeds, had a much shorter recruitment period, and recruited the largest sample. METHODS: To better understand why RDS recruitment was more successful in Montreal compared to other sites, we conducted an analysis to examine RDS recruitment characteristics for GBM in each of the three study sites, explore demographic characteristics and measures of homophily, that is, the tendency of individuals to recruit other study participants who are like themselves, and compared motivations for study participation. RESULTS: Montreal had the greatest proportion of participants over the age of 45 (29.1% in Montreal, 24.6% in Vancouver, and 21.0% in Toronto) and the highest homophily for this age group, but homophily was high across the three cities. Montreal also reported the lowest percentage of participants with an annual income greater or equal to $60,000 (7.9% in Montreal, 13.1% in Vancouver and 10.6% in Toronto), but homophily was similar across all three cities. The majority of participants indicated interest in sexual health and HIV as the main reason for participating (36.1% in Montreal, 34.7% in Vancouver, and 29.8% in Toronto). Financial interest as the main reason for participation was low (12.7% in Montreal, 10.6% in Vancouver, and 5.7% in Toronto). CONCLUSION: Taken together, although we found some differences in study demographic characteristics and homophily scores, we were unable to fully explain the different recruitment success based on the data available. Our study underlines the fact that success of RDS implementation may vary by unknown factors, and that researchers should be proactive and flexible to account for variability.
