#ItsNotInYourHead: A Social Media Campaign to Disseminate Information on Provoked Vestibulodynia.

Provoked Vestibulodynia (PVD) is a type of localized vulvodynia (or pain in the vulva). The estimated prevalence of this condition is about 12% of the general population and approximately 20% of women under the age of 19. Many women who live with PVD suffer in silence for years before receiving a diagnosis. Whereas cognitive behavioral therapy (CBT) was already known to be effective for managing symptoms of PVD, there has recently been a published head-to-head comparison of CBT versus mindfulness-based therapy for the primary outcome of pain intensity with penetration. The trial revealed that both treatments were effective and led to statistically and clinically meaningful improvements in sexual function, quality of life, and reduced genital pain, with improvements retained at both 6- and 12-month follow-ups. We then undertook an end-of-grant knowledge translation (KT) campaign focused on the use of social media to disseminate an infographic video depicting the findings. Social media was strategically chosen as the primary mode of dissemination for the video as it has broad reach of audience, the public can access information on social media for free, and it presented an opportunity to provide social support to the population of women with PVD who are characterized as suffering in silence by starting a sensitive and empowering dialogue on a public platform. In this paper, we summarize the social media reach of our campaign, describe how and why we partnered with social media influencers, and share lessons learned that might steer future KT efforts in this field.

A Qualitative Exploration of Women's Experiences of Living With Chronic Vulvar Dermatoses.

BACKGROUND: Many vulvar dermatoses (VDs) are chronic and cannot be "cured," thus affected women must learn to live with the impact of the disease, and its treatment, on their quality of life. AIM: To qualitatively investigate the impact of VDs on women's quality of life through firsthand accounts. METHODS: 12 women, 7 with lichen sclerosus and 5 with erosive vulvovaginal lichen planus recruited from a vulvar disease clinic participated in in-depth, exploratory interviews. Scripts were analyzed by applying a thematic network. The following steps were used: (1) coding the text, (2) development of descriptive themes, and (3) generation of thematic networks. OUTCOMES: The main outcome explored was the narrative experiences of women living with VDs. RESULTS: A global theme of suffering emerged. Themes associated with this suffering were organized under the themes of isolation, interference, and grieving. Women felt isolated because they felt unable to talk about their suffering; experienced a lack of external validation and support; and felt different as individuals, women, and sexual beings. Most women expressed negative views of their genitalia. Women spoke of the VDs, and its management, as interfering with thoughts, activities, and sex life. Symptoms were described as all-encompassing. Women spoke about limiting and/or avoiding daily activities and, in particular, sexual activities. Women described diminished sexual pleasure and experienced loss in their intimate relationships. Women described an ongoing grieving process; anger and sadness over the loss of their former healthy self; the burden of ongoing treatment; and attempts to cope and accept their current condition. CLINICAL IMPLICATIONS: The findings suggest that assessment of women with VDs should include a detailed history of the impact of the VDs on women's psychological and sexual health. STRENGTHS AND LIMITATIONS: A strength of this study is that we openly explored the lived experiences of women who had been clinically diagnosed with vulvar lichen sclerosus and erosive vulvovaginal lichen planus. A limitation is that the findings may not represent the experience of women living with VDs who do not wish to discuss their VDs or who are undiagnosed, untreated, and/or treated by other health-care providers. CONCLUSIONS: Women described profound impact of VDs on psychological and sexual health. Sadownik LA, Koert E, Maher C, et al. A Qualitative Exploration of Women's Experiences of Living With Chronic Vulvar Dermatoses. J Sex Med 2020;17:1740-1750.

Feasibility and Acceptability of a Mobile Technology Intervention to Support Postabortion Care in British Columbia: Phase I.

BACKGROUND: Over 30% of women in Canada undergo an abortion. Despite the prevalence of the procedure, stigma surrounding abortion in Canada leads to barriers for women to access this service. The vast majority of care is concentrated in urban settings. There is evidence to support utilization of innovative mobile and other technology solutions to empower women to safely and effectively self-manage aspects of the abortion process. This study is part 1 of a 3-phase study that utilizes user-centered design methodology to develop a digital health solution to specifically support follow-up after an induced surgical abortion. OBJECTIVE: This study aimed to (1) understand how women at 3 surgical abortion clinics in an urban center of British Columbia utilize their mobile phones to access health care information and (2) understand women's preferences of content and design of an intervention that will support follow-up care after an induced abortion, including contraceptive use. METHODS: The study design was based on development-evaluation-implementation process from Medical Research Council Framework for Complex Medical Interventions. This was a mixed-methods formative study. Women (aged 14-45 years) were recruited from 3 urban abortion facilities in British Columbia who underwent an induced abortion. Adaptation of validated surveys and using the technology acceptance model and theory of reasoned action, a cross-sectional survey was designed. Interview topics included demographic information; type of wireless device used; cell phone usage; acceptable information to include in a mobile intervention to support women's abortion care; willingness to use a mobile phone to obtain reproductive health information; optimal strategies to use a mobile intervention to support women; understand preferences for health information resources; and design qualities in a mobile intervention important for ease of use, privacy, and security. Responses to questions in the survey were summarized using descriptive statistics. Qualitative analysis was conducted with NVivo using a thematic analysis approach. This study was approved by the local ethics board. RESULTS: A waiting-room survey was completed by 50 participants, and semistructured interviews were completed with 8 participants. The average age of participants was 26 years. Furthermore, 94% (47/50) owned a smartphone, 85% (41/48) used their personal phones to go online, and 85% would use their cell phone to assist in clinical care. Qualitative analysis demonstrated that women prefer a comprehensive website that included secure email or text notifications to provide tools and resources for emotional well-being, contraceptive decision making, general sexual health, and postprocedure care. CONCLUSIONS: A community-based mixed-methods approach allowed us to understand how women use their cell phones and what women desire in a mobile intervention to support their postabortion care. The findings from this formative phase will assist in the development and testing of a mobile intervention to support follow-up care after an induced surgical abortion.

Feasibility and Acceptability of a Mobile Technology Intervention to Support Postabortion Care After Surgical Abortion (the FACTS Study Phase 3): Mixed Methods Prospective Pilot Study.

BACKGROUND: In Canada, 1 in 3 women and people of gestational age undergo an abortion in their lifetime. Despite the liberal legal context, barriers continue to exist for women and people who can become pregnant to access this service. OBJECTIVE: This study aims to (1) conduct a pilot study to demonstrate the feasibility and acceptability of myPostCare to support follow-up care after a procedural abortion; (2) use the findings to understand whether myPostCare has the potential to improve contraceptive behavior and knowledge, emotional well-being, and sexual health knowledge; and (3) develop a better understanding of how innovative mobile solutions can support integrative health programs in British Columbia with the goal of expanding to other sites across Canada. METHODS: People of gestational age (aged 14-45 y) who underwent a procedural abortion were recruited from 2 urban abortion facilities in British Columbia. The participants completed a baseline quantitative survey and were provided access to myPostCare for up to 30 days. A follow-up quantitative survey was sent via email on day 30. Qualitative interviews were conducted to explore user satisfaction and usability of myPostCare. Responses to the survey questions were summarized using descriptive statistics, and the system usability scale (SUS) was scored according to the instructions. A secure analytics platform was implemented to obtain data on the overall use of the website by users. Qualitative analysis was conducted with NVivo using a thematic analysis approach. This study was approved by the Women's and Children's Research Ethics Board. RESULTS: Overall, 62 participants were recruited (average age 30 y); 40% (25/62) of the participants completed the exit surveys, and 24% (6/25) consented to participate in the semistructured interviews; 40 participants had undergone an immediate postabortion intrauterine device (IUD) insertion, and 22 did not have an IUD inserted. Participants were satisfied with myPostCare. The SUS average score was 81.5 (SD 9.7; median 82.5, IQR 77.5-87.5), indicating high usability of the tool. Overall, 88% (22/25) of the participants changed their contraceptive method to an IUD. Web-based analytics demonstrated that there were 61 unique visitors to the site, and the top pages visited were Postprocedure Care, Emotional Well-Being, and Contraception Explorer. The longest time spent on the website was 56 minutes. The overall email open rate was 80%, with a click rate of 36%. CONCLUSIONS: This study demonstrates that communities and individuals are important collaborators in developing a mobile innovation that facilitates access to high-quality patient-centered abortion care. Through the cocreation process, a digital platform such as myPostCare highlighted a gap in abortion care in Canada, particularly around follow-up support after a procedural abortion.

Feasibility and Acceptability of a Mobile Technology Intervention to Support Postabortion Care (The FACTS Study Phase II) After Surgical Abortion: User-Centered Design.

BACKGROUND: Human-centered design is a methodology that applies an iterative participatory process that engages the end-user for whom an innovation or intervention is designed for from start to end. There is general evidence to support the use of human-centered design for development of tools to affect health behavior, but specifically for family planning provision. This study is part two of a three-phase study that uses a user-centered design methodology which uses the findings from Phase I to design, develop, and test a digital health solution to support follow-up after an induced surgical abortion. OBJECTIVE: The objectives for this study were to: (1) develop a Web-based intervention based on preferences and experiences of women who underwent an abortion as measured in the formative phase of the Feasibility and Acceptability of a Mobile Technology Intervention to Support Postabortion Care Study; (2) conduct usability testing of the intervention to determine user-friendliness and appropriateness of the intervention; and (3) finalize a beta version of the Web-based intervention for pilot testing. METHODS: The study design was based on the "development-evaluation-implementation" process from the Medical Research Council Framework for Complex Medical Interventions. This study is in Phase II of III and is based on user-centered design methodology. Phase I findings demonstrated that women engage with technology to assist in clinical care and they preferred a comprehensive website with email or text notifications to support follow-up care. In Phase II we collaborated with family planning experts and key stakeholders to synthesize evidence from Phase I. With them and a development partner we built a prototype. Usability testing was completed with 9 participants using a validated System Usability Scale. This was then used to refine the intervention for Phase III pilot study. This study was approved by the local Ethics board. RESULTS: We developed a comprehensive Web-based tool called myPostCare.ca, which includes: Post-Procedure Care, Emotional Well-Being Tool, Contraception Explorer, Sexual Health, Book an Appointment, and Other Resources. Additionally, over the course of a month after the procedure, automatic email notifications were sent to women as a form of virtual follow-up support, directing them to myPostCare.ca resources. The Web-based tool was refined based on usability testing results. CONCLUSIONS: This study demonstrated that user-centered design is a useful methodology to build programs and interventions that are women-centered, specifically for abortion care.