Community of trauma care partnering with stakeholders to improve injury outcomes: focus group analysis.

Introduction: Engaging trauma survivors/caregivers results in research findings that are more relevant to patients' needs and priorities. Although their perspectives increase research significance, there is a lack of understanding about how best to incorporate their insights. We aimed to capture stakeholder perspectives to ensure research is meaningful, respectful, and relevant to the injured patient and their caregivers. Methods: A multiphase, inductive exploratory qualitative study was performed, the first phase of which is described here. Virtual focus groups to elicit stakeholder perspectives and preferences were conducted across 19 trauma centers in the USA during 2022. Discussion topics were chosen to identify patients' motivation to join research studies, preferences regarding consent, suggestions for increasing diversity and access, and feelings regarding outcomes, efficacy, and exception from informed consent. The focus groups were audio recorded, transcribed, coded, and analyzed to identify the range of perspectives expressed and any common themes that emerged. Results: Ten 90-minute focus groups included patients/caregiver (n=21/1) and researchers (n=14). Data analysis identified common themes emerging across groups. The importance of trust and preexisting relationships with the clinical care team were the most common themes across all groups. Conclusion: Our findings reveal common themes in preferences, motivations, and best practices to increase patient/caregiver participation in trauma research. The project's next phases are distribution of a vignette-based survey to establish broad stakeholder consensus; education and dissemination activities to share strategies that increase research engagement and relevance for patients; and the formation of a panel of patients to support future research endeavors. Level of evidence: Level IV.

Managing identity impacts associated with disclosure of HIV status: a qualitative investigation.

Disclosure of HIV status to potential and current sex partners by HIV-positive people (HIVPP) is a complex issue that has received a significant amount of attention. Research has found that disclosure depends upon the evaluation by HIVPP of potential benefits and risks, especially of the risks stemming from the profound social stigma of HIV and AIDS. Drawing on concepts from Goffman's classic stigma theory and Anderson's more recently developed cultural-identity theory of drug abuse, we analyzed data from in-depth, post-intervention qualitative interviews with 116 heterosexually active, HIV-positive injection drug users enrolled in a randomized trial of a behavioral intervention to prevent HIV transmission. We explored how disclosure experiences lead to "identity impacts" defined as: (1) identity challenges (i.e. interactions that challenge an individual's self-concept as a "normal" or non-deviant individual); and (2) identity transformations (i.e. processes whereby an individual comes to embrace a new identity and reject behaviors and values of an old one, resulting in the conscious adoption of a social and/or public identity as an HIV-positive individual). Participants engaged in several strategies to manage the identity impacts associated with disclosure. Implications of these findings for research and prevention programming are discussed.

The female condom: effectiveness and convenience, not "female control," valued by U.S. Urban adolescents.

Abstract Data on adolescents' views regarding the female condom are limited. We conducted seven single-gender focus groups with 47 New York City boys and girls aged 15-20 years (72% African American; 43% ever on public assistance; 72% sexually active; 25% had either been pregnant or fathered a pregnancy). Conceptual mapping was performed by participants to reveal the characteristics of protective methods deemed important to them. During analysis we specifically evaluated how the female condom was mapped. Girls consistently organized methods by, and thus were concerned about, contraceptive effectiveness, side effects, and availability (over the counter vs. provider controlled). Participants tended to classify the female condom with the male condom rather than as "female controlled." Maps varied among boys but contraceptive effectiveness was an important theme. Boys, but not girls, consistently and variously articulated an awareness of sexual pleasure when discussing this topic. Emphasizing the female condom's contraceptive effectiveness, lack of side effects, and availability may be important when counseling adolescents.

A randomized trial of enhanced HIV risk-reduction and vaccine trial education interventions among HIV-negative, high-risk women who use noninjection drugs: the UNITY study.

BACKGROUND: Limited data are available on interventions to reduce sexual risk behaviors and increase knowledge of HIV vaccine trial concepts in high-risk populations eligible to participate in HIV vaccine efficacy trials. METHODS: The UNITY Study was a 2-arm randomized trial to determine the efficacy of enhanced HIV risk-reduction and vaccine trial education interventions to reduce the occurrence of unprotected vaginal sex acts and increase HIV vaccine trial knowledge among 311 HIV-negative noninjection drug using women. The enhanced vaccine education intervention using pictures along with application vignettes and enhanced risk-reduction counseling consisting of 3 one-on-one counseling sessions were compared with standard conditions. Follow-up visits at 1 week and 1, 6, and 12 months after randomization included HIV testing and assessment of outcomes. RESULTS: During follow-up, the percent of women reporting sexual risk behaviors declined significantly but did not differ significantly by study arm. Knowledge of HIV vaccine trial concepts significantly increased but did not significantly differ by study arm. Concepts about HIV vaccine trials not adequately addressed by either condition included those related to testing a vaccine for both efficacy and safety, guarantees about participation in future vaccine trials, assurances of safety, medical care, and assumptions about any protective effect of a test vaccine. CONCLUSIONS: Further research is needed to boost educational efforts and strengthen risk-reduction counseling among high-risk noninjection drug using women.

The role of community-academic partnerships: implications for medical education, research, and patient care.

PROBLEM: Despite several studies demonstrating the benefits of community-academic partnerships, their value to academic health centers (AHCs) is often viewed with skepticism by some in the academic community. PURPOSE: This paper examines the roles of community organizations and the mechanisms by which they can enhance the AHC missions of education, research, and patient care. KEY POINTS: As lay educators, community organizations can contribute to medical education by exposing students to diverse cultural perspectives. As community advocates, they can facilitate the research process by helping to frame culturally relevant research questions, by ensuring that research survey instruments are culturally and linguistically appropriate, and that research findings are disseminated to community stakeholders. As lay health workers, they can facilitate health care delivery by providing a link to hard-to-reach populations through their outreach and referral initiatives. CONCLUSION: Forming partnerships between community organizations and AHCs can support the missions of AHCs and simultaneously develop and strengthen community capacity.

Hepatitis B infection and vaccination among high-risk noninjection drug-using women: baseline data from the UNITY study.

OBJECTIVES: Few studies of hepatitis B virus (HBV) infection and hepatitis B vaccination have focused on women, and specifically, women who are at high risk. This study was designed to assess the extent of HBV infection and vaccination, level of knowledge about hepatitis B, motivators and barriers to accepting vaccination and uptake of hepatitis B vaccine. DESIGN: From March 2005 to June 2006, 402 HIV-negative noninjection drug-using women at sexual risk were recruited, interviewed, and tested for markers of HBV infection. RESULTS: Based on serologic testing, 16.7% were previously vaccinated against HBV, 31.1% were previously infected and 52.2% were still susceptible to HBV. Knowledge of HBV infection, transmission, and prevention was low with a mean of 6.1 of 12 knowledge items correctly identified as true or false; a substantial percent of women were not sure of the correct answer. Of the women still susceptible, 69.0% started the hepatitis B vaccine series after counseling given through the study. CONCLUSION: This study illustrates that there continues to be gaps in current strategies for administering hepatitis B vaccine among female populations at sexual risk. Interventions are needed for this population to increase awareness and knowledge of hepatitis B, its transmission, impact on health and the availability of a safe and effective vaccine, supplemented by community programs for adult vaccination.

Community reentry: perceptions of people with substance use problems returning home from New York City jails.

Each year about 100,000 people return to New York City communities from municipal jails. Although about four-fifths report drug or alcohol problems, few have received any formal drug treatment while in jail. Researchers and practitioners have identified a number of policies related to corrections, income, housing, and drug treatment that may be harmful to the successful reintegration of people leaving jail. In order to explore the challenges to successful community reentry, six focus groups and one in-depth interview were conducted with 37 men and women who had been released from jail or prison in the last 12 months. Participants were asked to describe their experiences prior to and immediately following release from jail. Findings suggest that many people leaving jail are not prepared for release and, upon release, face a myriad of obstacles to becoming healthy, productive members of their communities. We discuss the implications of these findings for programs and policies that promote community reintegration of individuals returning from correctional facilities.

Challenges and facilitating factors in sustaining community-based participatory research partnerships: lessons learned from the Detroit, New York City and Seattle Urban Research Centers.

In order to address the social, physical and economic determinants of urban health, researchers, public health practitioners, and community members have turned to more comprehensive and participatory approaches to research and interventions. One such approach, community-based participatory research (CBPR) in public health, has received considerable attention over the past decade, and numerous publications have described theoretical underpinnings, values, principles and practice. Issues related to the long-term sustainability of partnerships and activities have received limited attention. The purpose of this article is to examine the experiences and lessons learned from three Urban Research Centers (URCs) in Detroit, New York City, and Seattle, which were initially established in 1995 with core support from the Centers for Disease Control and Prevention (CDC). The experience of these Centers after core funding ceased in 2003 provides a case study to identify the challenges and facilitating factors for sustaining partnerships. We examine three broad dimensions of CBPR partnerships that we consider important for sustainability: (1) sustaining relationships and commitments among the partners involved; (2) sustaining the knowledge, capacity and values generated from the partnership; and (3) sustaining funding, staff, programs, policy changes and the partnership itself. We discuss the challenges faced by the URCs in sustaining these dimensions and the strategies used to overcome these challenges. Based on these experiences, we offer recommendations for: strategies that partnerships may find useful in sustaining their CBPR efforts; ways in which a Center mechanism can be useful for promoting sustainability; and considerations for funders of CBPR to increase sustainability.