Snap out stigma photovoice project in the U.S. South.

BACKGROUND: The purpose of SNAP Out Stigma (SOS) was to design and implement a community-based intervention to reduce HIV-related stigma for people living with HIV (PLWH) in the Deep South. This region is a subset of 9 states including Memphis, Tennessee (project site) driving the epidemic in the United States. The purpose of this paper is to explain how PLWH in the U.S. South used Photovoice to communicate stigmatizing lived experiences and contextualize their intersection with multi-level sources of support. METHODS: PLWH attended one-on-one and/or group sessions with other PLWH. In Session 1, PLWH received a project overview, met other participants, received a camera and camera training, completed a standardized internalized stigma scale, discussed experiences of internalized stigma, and were instructed to take 3-10 pictures that captured stigma. In Session 2, PLWH discussed the pictures and their meaning. In Session 3, PLWH expanded on what they shared in previous sessions in a one-on-one interview. Thematic analysis captured key patterns of how PLWH experienced stigma. RESULTS: Forty-seven PLWH attended Session 1 and were issued a camera. Of those, 35 completed sessions 2 and 3. Participants self-identified as cis man who has sex with men (n = 18), ciswoman (n = 5), transwoman (n = 10), and non-binary (n = 2). Four emergent themes intersecting with internalizations of stigma were identified including: medical, social support, church, and self. CONCLUSIONS: The SOS intervention created a safe space for PLWH to share lived experiences of stigmatization. Photovoice facilitated discussion topics ranging from healing and recovery to overcoming factors of social determinants of HIV. We identified trauma-informed growth as an area of future programs for PLWH.

Engaging Black men who have sex with men (MSM) in the South in identifying strategies to increase PrEP uptake.

BACKGROUND: Promotion, uptake, and adherence of pre-exposure prophylaxis (PrEP) is paramount to ending the HIV epidemic among young Black men who have sex with men in the South. The purpose of this study was to explore strategies needed for and barriers to PrEP uptake needed to achieve HIV prevention goals identified in the U.S. Department of Health & Human Services initiative to reduce new HIV infections in the United States by 90 percent by 2030. METHOD: Young adults (n = 25) between the ages of 15-34 were recruited from community-based organizations in Memphis to participate in four focus group discussions. Discussion topics included motivations, barriers, and facilitators to PrEP use. Data were analyzed using thematic analysis. RESULTS: All (100%) of participants self-identified as HIV-negative, Black (96%), men who have sex with men (96%), and currently prescribed PrEP/Truvada (60%). Themes identified for increasing uptake included 1) trusted peers, 2) relatable healthcare provider (e.g., Historically Black College and University (HBCU) trained, LGBTQ), and 3) use of social media. Mislabeling of PrEP as promiscuity promoting and limitations with PrEP marketing (e.g., solely LGBTQ) were recognized as barriers that perpetuated stigma. CONCLUSION: Findings suggest the importance of increasing awareness among health professions students matriculating at HBCUs of their perceived role as relatable healthcare providers by Black MSM; working closely with couples; and crafting of PrEP messaging that is non-stigmatizing. Findings will inform public health interventions for young Black MSM and facilitate HIV prevention efforts with other groups disproportionally affected by HIV in the South.

Image to Action: Past Success, Ongoing Questions, and New Horizons for Photovoice Exhibits.

When participants define and share their lives through photovoice, they can potentially become empowered as experts in their health needs. Images from photovoice exhibits confront gaps between what researchers and policy makers assume people need and what people show that they need. The exhibit is bridge to action across the socioecological spectrum and a way that photovoice studies have helped affect change at individual, interpersonal, community, institutional, and policy levels. However, for this nontraditional modality of research to be most effective in achieving its goals, substantial buy-in from participants, researchers, and policy makers is necessary. Despite the great potential of photovoice exhibits, difficulties in translating findings to social action, ethical quandaries related to participant privacy and representation, and not knowing the overall impact of exhibits on viewers can severely inhibit success. Consequently, we recommend four areas to consider for the future of exhibits: (1) understanding and measuring empowerment and change that happens for participants via photovoice exhibits, (2) considering innovative and new forms of exhibits and sharing information with the public, (3) documenting exhibit processes to produce lessons learned and guides for others, and (4) exploring the ethics and impact of exhibits on photovoice audiences.

A Photovoice Exploration of the Lived Experience of Intersectional Stigma among People Living with HIV.

Stigma research among people living with HIV (PLWH) has been increasingly interpreted through the framework of intersectionality, which comprehends the interwovenness of vulnerable individuals' identities. However, community-based participatory methods have not been widely employed to better understand these forms of stigma through an intersectional lens, despite such methods offering the opportunity for participants to define issues and solutions from their lived experiences. To advance this research, we employed photovoice to elicit grounded, visceral definitions of stigma for PLWH. Participants took pictures representing their identities and experiences with HIV and other stigmas and discussed them in groups and individual interviews, ultimately creating a virtual exhibit to educate and inspire others. Theme and narrative analysis uncovered patterns in the visual and textual data, revealing participants' experiences of HIV stigma based on their intersections of sexuality, race/ethnicity, illness, and roles and expectations in specific scenarios. Stigma also fostered the development of participants' strengths, such as resiliency, and new identities, such as educators. Participatory methods like photovoice, where participants can define intersectionality on their own terms, can help direct interventions to limit the PLWH's lived stigmas and increase effective coping.

'You Have to Withstand That Because You Have Come for What You Have Come for': Barriers and facilitators to antiretroviral treatment access among older South Africans living with HIV.

Nationwide rollout of antiretroviral treatment (ART) is increasing the number of older persons living with HIV (OPLWH) in South Africa. Yet, little is known about how the sociological aspects of ageing - stigma, finances and family dynamics - impact access to ART. Qualitative interviews with 23 persons aged 50-plus living near Cape Town highlight the barriers and facilitators to the acceptability, affordability and availability of ART access among OPLWH. Key age-related barriers included perceived shame of sexuality and disclosing HIV status to others, perceived disrespect by clinical staff, affording transportation to clinics and pre-existing co-morbidities. Key age-related facilitators included family moral and financial support, particularly from children and grandchildren, and access to social grants. Importantly, many barriers and facilitators had feedback loops, for example social grants reduced transportation barriers to clinics when ageing and poor health limited mobility. As the population living with HIV ages, it is critical to assess the ways ageing, as a social process, impacts ART access and to address these to improve older persons' HIV care.

How black heterosexual men's narratives about sexual partner type and condom use disrupt the main and casual partner dichotomy: 'we still get down, but we not together'.

Sexual partner types and partnership dynamics have important implications for condom use. Yet most HIV prevention research conceptualises condom use as individual-level rather than dyadic-level behaviour. Evidence of a generalised HIV epidemic in urban predominantly low-income US Black heterosexual communities highlights the need for a culturally and contextually-grounded understanding of partner types, partnership dynamics and condom use from the perspective of Black heterosexual men. We conducted individual interviews with 30 self-identified men between the ages of 18 and 44, 18 (60%) of whom reported at least two partner types in the last 6 months. Key findings include: (1) 'main and casual' partner types per the HIV prevention literature; (2) three casual-partner subtypes: primary, recurrent, and one-time casuals; (3) overlapping partnership dynamics between main partners, primary-casual partners and recurrent-casual partners, but not one-time casual partners; and (4) consistent condom use reported for one-time casual partners only. The study underscores the critical need for more condom promotion messages and interventions that reflect the dyadic and culturally-grounded realities of US Black heterosexual men's sexual partner types and partnership dynamics.

Digital storytelling: Narrating meaning in bereavement.

Individuals who cannot make sense of a significant death are more likely to experience bereavement complications than those who are able to reconcile their loss with existing or newly-developed ways of understanding the world. Digital Storytelling, a multi-media narrative technique, has been identified as a potential facilitator of meaning-making processes. In this secondary qualitative analysis, researchers described the meaning-making processes evident in bereaved individuals' (N = 14) personally-created digital stories, identifying sense making, benefit finding, continuing bonds, shifting identity, and addressing unfinished business. Findings support prior research and enrich emerging understandings of arts-based interventions as tools to facilitate and communicate meaning-making processes.

Are We Prescribing Enough HIV Pre-Exposure Prophylaxis in Missouri?: A Cross-Sectional Study at University of Missouri Health Care.

Despite the proven efficacy and safety of HIV pre-exposure prophylaxis (PrEP), it remains underutilized. PrEP use among Missouri providers has increased as the rate of new HIV infections grows statewide, but remains lower than the Midwest and United States (U.S.) averages. Because the Centers for Disease Control and Prevention (CDC) identify Missouri as at-risk for an HIV outbreak, we seek to characterize HIV testing practices and PrEP knowledge and use among Missouri healthcare providers.

Sexual and Relationship Interest, Knowledge, and Experiences Among Adolescents and Young Adults with Autism Spectrum Disorder.

Little research exists to describe sexual and romantic relationships among adolescents and young adults with autism spectrum disorder (ASD) from their perspectives. Sexuality and intimacy are developmentally important and influence health and quality of life for all adolescents and young adults, including those with ASD. This study explored and compared the sex and relationship experiences of 27 adolescents and young adults with ASD (males = 20). Adolescents and young adults participated in semi-structured interviews to explore this topic. Using theme analysis, we uncovered four thematic categories: (1) interest in relationships, (2) ideal partners, (3) realities of adolescent and young adult relationships, and (4) advice about sex and relationships. Although many adolescents and young adults expressed wanting a relationship, few reported having partners. Among those that did, their actual relationships rarely met ideals. Most adolescents and young adults talked with parents and friends but not healthcare providers about sex and relationships. All adolescents and young adults described the need for additional education. Adolescents and young adults express the need for education that covers basic safety and sexual health topics as well as social/relationship skills building and courtship modeling. These findings can inform the design of tailored sexual health intervention. Future research should examine specific issues related to sexuality from the adolescents' and young adults' perspectives.

Exploring Lived Experiences of Chronic Pain Through Photo-Elicitation and Social Networking.

OBJECTIVE: To understand how patients' use of photo-elicitation and online social networks (Facebook) enhances their understanding of what it means to live with pain. DESIGN: Qualitative substudy of the intervention arm of a randomized trial. SETTING/SUBJECTS: Primary care patients living with pain drawn from nine family practices with at least two pain visits in the last six months. METHODS: The private Facebook group was co-facilitated by a moderator and a patient-investigator who lives with chronic pain. Patients were asked to share photos that elicit their lived experience with chronic pain, and facilitators guided participants in ongoing discussion about these photos, and thus the life with pain. Facebook discussions were analyzed via Dedoose (a qualitative analysis software) using thematic analysis. RESULTS: Discussions of photos elicited three overarching themes regarding patients' lived experience with chronic pain: 1) patients' redefined pain identity; 2) pain interference with enjoyment of life and activities; and 3) patients' diminished ability to function. CONCLUSIONS: Photo-elicitation is an innovative way to shed light on patients' lived experience with chronic pain. Despite some technical challenges, Facebook support groups utilizing photo-elicitation can provide a readily available platform that can facilitate interchange of patient experiences and might help patients communicate with their providers.

Exploring the Use of Photo-Stories and Fiction Writing to Address HIV Stigma Among Health Professions Students.

HIV/AIDS stigma exists in healthcare and is harmful to people living with HIV (PLWH). Few anti-stigma interventions target undergraduate health professions students, although evidence supports reaching providers early in their training. We developed two different arts-based interventions based on Intergroup Contact Theory: a Photovoice intervention in which they viewed photo-stories of PLWH and a fiction writing intervention in which they developed characters with HIV. We present the results of a qualitative analysis of the post-intervention interviews, to elaborate on what and how students learned from both interventions. Via theme analysis, we identified three similar patterns among both sets of intervention participants. Interventions helped students to understand PLWH as "people first," experience emotional responses to PLWH, and complicated their understanding of who was living with HIV. All three themes illustrate how Photovoice and fiction writing interrupted stereotypes about PLWH and humanized PLWH to health professions students.

Systematic procedures to promote U.S. HIV medication adherence via Photovoice.

Medication adherence is essential to promote the health of people living with HIV (PL-HIV) and prevent HIV transmission in the U.S. Novel medication health promotion interventions are needed that address patient-centeredness, understandability, and communication with providers. The aims of this article are to define the systematic stages we used to develop an effective health promotion intervention via the products (e.g. images and stories) of Photovoice. We designed an intervention to improve HIV adherence knowledge, attitudes, and communication with providers through Photovoice. 16 PL-HIV used Photovoice strategies to describe their experiences with medication via images and captions and create an intervention (10 adherence promotion posters) that integrated photo-stories of their adherence motivators, journeys from sickness to health, and how they manage and counter HIV stigma. We outline the systematic process we used to adapt Photovoice to create the effective intervention for replication. The process included six stages: (i) identify scope of the project; (ii) create collaborative project team; (iii) design project materials; (iv) review and revise materials with team members; (v) disseminate materials; and (vi) evaluate materials. Photovoice is used traditionally as a social action research method. In this project, it was adapted to create patient-driven images and stories for health promotion posters. Poster viewers experienced improved self-efficacy for HIV medication adherence. Describing the adaptation of the Photovoice process in a deliberate and transparent way can support fidelity to the essence of the participant-driven method, while also allowing researchers and practitioners to replicate Photovoice as a successful health promotion intervention.

"Poems in the Entrance Area": Using Photo-Stories to Promote HIV Medication Adherence.

Adherence to antiretroviral medication among people living with HIV (PL-HIV) is critical to individual and public health. By some estimates only a quarter of PL-HIV are sufficiently adherent, underscoring a continued need for adherence-promoting strategies. In this analysis we explore the effect of adherence education posters developed via Photovoice. A group of PL-HIV generated images and captions to describe their adherence experiences and used their photo-stories to design 10 posters. We assessed viewers' ( N = 111) adherence knowledge, self-efficacy, and communication changes quantitatively and qualitatively before and 3 months after poster placement in the clinic. We analyzed quantitative data with an independent groups t test or a Mann-Whitney test, and qualitative interviews via theme analysis. Quantitative findings indicated no significant differences. Qualitative interviewees said that posters enhanced knowledge with nonthreatening, relatable information; self-efficacy by motivating patients to take medicine and disclose HIV to others; and communication by facilitating adherence conversations and creating a visually supportive clinic. Divergent quantitative and qualitative findings can be partially explained by inquiry methods. The posters may be more effective as part of discussions about their content, like those facilitated by qualitative interviews. Additional research regarding the application of Photovoice to health promotion is warranted.

Exploration and Comparison of Adolescents With Autism Spectrum Disorder and Their Caregiver's Perspectives on Transitioning to Adult Health Care and Adulthood.

Background: Adolescents with autism spectrum disorder (ASD) experience challenges achieving independence. Few studies assess both adolescents and caregivers' needs as adolescents transition to adult health care. Objective/Methods: This study explored and compared the health-related independence experiences of 27 adolescents with ASD and their caregivers. Caregivers participated in focus groups and adolescents participated in semi-structured interviews. Results: Thematic analysis of dyads' responses highlighted three common themes: (a) efforts toward independence, (b) low self-efficacy for adolescents' independence, and (c) desire for independence. Nuances in responses indicated that although members of dyads shared many experiences, they were not communicating these experiences with each other. Conclusions: Results suggest both groups understand the importance of health-related independence and are motivated to achieve independence but lack skills and supports. Improved communication about experiences and goals between caregivers, adolescents, and the care team are needed. These findings can inform future interventions to better support adolescents' transition to adult health care.

Reframing Autism: Young Adults With Autism Share Their Strengths Through Photo-Stories.

A dearth of research describes the lives of young adults with autism spectrum disorder (ASD) from the perspectives of young adults themselves. We explored young adults' strengths using Photovoice, a method in which participants use images and discussions to express themselves. Images were purposefully chosen to help young people participate in the research process. DESIGN AND METHODS: Eleven young adults captured their experiences growing up with ASD via images, and participated in three group photo discussions, an individual photo interview, and a photo exhibit. Qualitative data for analysis included session transcripts and photographs. We used strategies of theme analysis to understand participants' experiences. RESULTS: The mean age of the sample was 20years, and 7 participants were male. Three sub-themes describe youth's strengths: 1) special interests that cultivated positive emotions and coping strategies; 2) skills and activities that evoked pride; and 3) reframing ASD as special versus a disadvantage. CONCLUSIONS: The Photovoice method is well-suited to help young adults identify and express their strengths. Self-generated images and stories may offer a creative and effective form of communication for young adults with ASD. PRACTICE IMPLICATIONS: Health care practitioners can capitalize on how Photovoice helps young adults express themselves by using images to understand their health priorities and involve young adults in their care plans. With images of strength, for example, nurses can build young adults' confidence and help these individuals to identify areas of their mental and physical lives in which they can thrive and experience improved quality of life.

Measuring the Pros and Cons of What It Means to Be a Black Man: Development and Validation of the Black Men's Experiences Scale (BMES).

Although extensive research documents that Black people in the U.S. frequently experience social discrimination, most of this research aggregates these experiences primarily or exclusively by race. Consequently, empirical gaps exist about the psychosocial costs and benefits of Black men's experiences at the intersection of race and gender. Informed by intersectionality, a theoretical framework that highlights how multiple social identities intersect to reflect interlocking social-structural inequality, this study addresses these gaps with the qualitative development and quantitative test of the Black Men's Experiences Scale (BMES). The BMES assesses Black men's negative experiences with overt discrimination and microaggressions, as well their positive evaluations of what it means to be Black men. First, we conducted focus groups and individual interviews with Black men to develop the BMES. Next, we tested the BMES with 578 predominantly low-income urban Black men between the ages of 18 and 44. Exploratory factor analysis suggested a 12-item, 3-factor solution that explained 63.7% of the variance. We labeled the subscales: Overt Discrimination, Microaggressions, and Positives: Black Men. Confirmatory factor analysis supported the three-factor solution. As hypothesized, the BMES's subscales correlated with measures of racial discrimination, depression, resilience, and social class at the neighborhood-level. Preliminary evidence suggests that the BMES is a reliable and valid measure of Black men's experiences at the intersection of race and gender.

"I Created Something New with Something that Had Died": Photo-Narratives of Positive Transformation Among Women with HIV.

A dearth of research describes the strengths of women living with HIV (WLH), yet understanding these strengths can promote women's well-being and healthy behavior. This analysis explores positive life transformations among WLH through photo-stories. WLH (N = 30) from three U.S. cities participated in a pilot photovoice project to tell their story of HIV. The project included three group meetings, an individual interview, and a public exhibit. Using qualitative strategies of theme and narrative analysis we identified positive transformations in women's photo-stories. Participants were African American (83 %) and low income (83 %). Women described four major positive transitions in their lives including transformations related to healthfulness, spirituality, self-acceptance, and confidence. Despite challenges, WLH experience positive transformation and growth experiences. Understanding these transformative changes can shed light on women's motivation to make healthy life changes and thus frame strengths-based interventions for WLH. Photovoice itself is a potential strategy to promote WLH's strengths and health.

Sexual scripts and sexual risk behaviors among Black heterosexual men: development of the Sexual Scripts Scale.

Sexual scripts are widely shared gender and culture-specific guides for sexual behavior with important implications for HIV prevention. Although several qualitative studies document how sexual scripts may influence sexual risk behaviors, quantitative investigations of sexual scripts in the context of sexual risk are rare. This mixed methods study involved the qualitative development and quantitative testing of the Sexual Scripts Scale (SSS). Study 1 included qualitative semi-structured interviews with 30 Black heterosexual men about sexual experiences with main and casual sex partners to develop the SSS. Study 2 included a quantitative test of the SSS with 526 predominantly low-income Black heterosexual men. A factor analysis of the SSS resulted in a 34-item, seven-factor solution that explained 68% of the variance. The subscales and coefficient alphas were: Romantic Intimacy Scripts (α = .86), Condom Scripts (α = .82), Alcohol Scripts (α = .83), Sexual Initiation Scripts (α = .79), Media Sexual Socialization Scripts (α = .84), Marijuana Scripts (α = .85), and Sexual Experimentation Scripts (α = .84). Among men who reported a main partner (n = 401), higher Alcohol Scripts, Media Sexual Socialization Scripts, and Marijuana Scripts scores, and lower Condom Scripts scores were related to more sexual risk behavior. Among men who reported at least one casual partner (n = 238), higher Romantic Intimacy Scripts, Sexual Initiation Scripts, and Media Sexual Socialization Scripts, and lower Condom Scripts scores were related to higher sexual risk. The SSS may have considerable utility for future research on Black heterosexual men's HIV risk.

Risk and Protective Factors for HIV Self-disclosure among Poor African-American Women Living with HIV/AIDS.

African-American women with HIV are among the fastest growing populations with HIV. The psychosocial factors and beliefs/attitudes associated with disclosure and other un-safe sex practices are not fully understood in this population. A total of 158 HIV-positive women receiving primary care in an HIV clinic in Philadelphia who enrolled in a safe-sex intervention, completed a baseline questionnaire on their sexual activities with male partners and psychosocial factors that were potential protective/risk factors for unsafe sex. Women who were emotionally close and monogamous with their partner were most likely to disclose their HIV status and least likely to worry they had infected their partner. Women who were non-monogamous and who did not have an emotional connection to any of their partners were least likely to self-disclose. Partners were more likely to know each other's status when the woman felt she had a responsibility to talk about the importance of staying HIV-negative.

'Transitions are Scary for our Kids, and They're Scary for us': Family Member and Youth Perspectives on the Challenges of Transitioning to Adulthood with Autism.

BACKGROUND: Adolescents with autism spectrum disorder (ASD) face many challenges as they age into adulthood. Because little is known about the perspectives of caregivers and youth during this critical transition, this study explored their social, educational, and vocational needs and experiences. METHOD: Two focus groups were conducted with youth with ASD (n = 13) and two focus groups were conducted with their caregivers (n = 19), where theme analysis strategies derived from Grounded Theory were utilized to identify themes. RESULTS: Both groups experienced fear and anxiety about transitioning, unmet needs were also high, leaving caregivers struggling to fill gaps. Most caregivers and youth reported lacking individualized services. Caregivers faced difficulty in motivating youth and creating opportunities for education and employment. Although youth have future goals, they were unaware of steps needed to accomplish them and hesitant to talk to caregivers. CONCLUSIONS: Findings indicate considerable unmet needs for caregivers and youth with ASD. Perspectives of both groups should be considered when developing programmes and educating providers.