What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings.

BACKGROUND: US research organizations increasingly are supporting patient and stakeholder engagement in health research with a goal of producing more useful, relevant and patient-centered evidence better aligned with real-world clinical needs. The Patient-Centered Outcomes Research Institute (PCORI) engages patients, family caregivers and other health-care stakeholders, including clinicians, payers and policymakers, as active partners in prioritizing, designing, conducting and disseminating research as a key strategy to produce useful evidence for health-care decision making. OBJECTIVE: To inform effective engagement practices and policies, we sought to understand what motivates patients and caregivers to engage as partners on PCORI-funded research projects and how such engagement changed their lives. METHODS: We conducted thematic analysis of open-ended survey responses from 255 patients, family caregivers and individuals from advocacy and community-based organizations who engaged as partners on 139 PCORI-funded research projects focusing on a range of health conditions. RESULTS: Partners' motivations for engaging in research were oriented primarily towards benefiting others, including a desire to improve patients' lives and to support effective health-care interventions. In addition to feeling they made a positive difference, many partners reported direct benefits from engagement, such as new relationships and improved health habits. DISCUSSION AND CONCLUSIONS: By identifying patient and caregiver motivations for engaging in research partnerships and what they get out of the experience, our study may help research teams and organizations attract partners and foster more satisfying and sustainable partnerships. Our findings also add to evidence that engagement benefits the people involved as partners, strengthening the case for more widespread engagement.

Responsible men, blameworthy women: Black heterosexual men's discursive constructions of safer sex and masculinity.

OBJECTIVE: Although Black heterosexual men (BHM) in the United States rank among those most affected by HIV, research about how safer sex messages shape their safer sex behaviors is rare, highlighting the need for innovative qualitative methodologies such as critical discursive psychology (CDP). This CDP study examined how: (a) BHM construct safer sex and masculinity; (b) BHM positioned themselves in relation to conventional masculinity; and (c) discursive context (individual interview vs. focus group) shaped talk about safer sex and masculinity. METHOD: Data included individual interviews (n = 30) and 4 focus groups (n = 26) conducted with 56 self-identified Black/African American heterosexual men, ages 18 to 44. RESULTS: Analyses highlighted 5 main constructions: (a) condoms as signifiers of "safe" women; (b) blaming women for STI/responsibility for safer sex; (c) relationship/trust/knowledge; (d) condom mandates; and (e) public health safer sex. Discourses positioned BHM in terms of conventional masculinity when talk denied men's agency for safer sex and/or contraception, or positioned women as deceitful, or apathetic about sexual risk and/or pregnancy. Notably, discourses also spotlighted alternative masculinities relevant to taking responsibility for safer sex or sexual exclusivity. Discursive context, namely the homosocial nature of focus group discussions, shaped how participants conversed about safer sex, and masculinity but not the content of that talk. CONCLUSION: In denying BHM's responsibility for safer sex, BHM's discourses about safer sex and masculinity often mirror public health messages, underscoring a critical need to sync these discourses to reduce sexual risk, and develop gender-transformative safer sex interventions for BHM.

Acción Mutua (Shared Action): a multipronged approach to delivering capacity-building assistance to agencies serving Latino communities in the United States.

Culturally appropriate, theory-based capacity-building assistance can serve a vital role in helping HIV prevention providers remain up-to-date, effective, and responsive to those they serve. Funded by the Centers for Disease Control and Prevention (CDC), AIDS Project Los Angeles, in collaboration with San Francisco State University's César E. Chávez Institute, conducted full-day site visits and qualitative interviews in 2005 with mid-level management staff of CDC-funded community-based organizations delivering HIV prevention services to Latino communities in the western region of the United States. We found that agencies we visited (1) had not yet adapted the evidence-based interventions they were using at the time of our visit and (2) requested technical assistance and training in the areas of program development, evaluation, group facilitation techniques, consumer recruitment, client retention, intervention adaptation, and materials development. Findings from this needs assessment were used to inform our seven-pronged approach to delivering capacity-building assistance entitled "Acción Mutua" (Shared Action). The approach emphasizes strategic partnerships, stakeholder involvement, organizational self-assessment, culturally appropriate materials development, interactive training, tailored onsite technical assistance, and professional networking opportunities. This article describes our approach in detail, the assessment process we used to develop it, and its implications for capacity-building practice.

Reasons for stimulant use among Latino gay men in San Francisco: a comparison between methamphetamine and cocaine users.

The literature on drug-using gay men has documented a strong relationship between methamphetamine (MA) use and high-risk sexual practices. Of particular concern is that MA use is associated with powerful sexual effects that may facilitate the transmission of HIV. As a group, Latino gay men show high risk for HIV infection, and such risk has been related to episodes of sex under the influence of drugs. However, little information exists about stimulant use among Latino gay men, and it is not known whether MA use in this population is similarly motivated by sexual effects. This study reports reasons for stimulant use in a sample of 300 Latino gay men randomly selected from social and sexual venues; only men who reported stimulant use in the last 6 months were included in the study. Of stimulant users, 51% (n=153) reported MA, 44% (n=133) reported cocaine, and 5% (n=14) reported crack as their "most frequently used stimulant" (MFS); reasons for use were assessed for the participant's specific MFS. Reasons for stimulant use clustered by five main factors, including energy, sexual enhancement, social connection, coping with stressors, and focused work productivity. MA users gave reasons more frequently related to sexual enhancement (to have better sex, more sex, and more anal sex) whereas cocaine users gave reasons more often related to social connections (to be more sociable and to fit in with other gay men). These findings suggest that Latino gay men use stimulants for reasons that are important in their social, emotional, work, and sexual lives. Like non-Latino Whites, Latino gay men were found to rely on MA for reasons related to sexual enhancement, possibly to meet cultural expectations and norms of sexual prowess and sexual success in the gay community.