Developing Graphic Messages for Vaping Prevention Among Black and Latino Adolescents: Participatory Research Approach

Background As an important transition stage in human development, adolescence is a critical window for vaping prevention. There is a substantial gap in communication research on vaping prevention among racial and ethnic minority groups. Their representation is essential to develop, implement, and disseminate innovative and effective interventions for vaping prevention. Objective The aim of this study is to describe the participatory research (PR) procedures used with Black and Latino adolescents to develop culturally and linguistically appropriate graphic messages for vaping prevention. Methods This PR study used a qualitative, user-centered design method. We conducted a series of focus groups with 16 Black and Latino adolescents to develop culturally and linguistically appropriate graphic messages for vaping prevention. The biobehavioral model of nicotine addiction provided a framework for the development of the graphic messages. Participants met 4 times to provide iterative feedback on the graphic messages until they reached a consensus on overall quality and content. Results At baseline, the participants’ mean age was 15.4 years (SD 1.4). Of the participants, 50% (8/16) were female, 88% (14/16) were heterosexual, 56% (9/16) were Black/African American, and 44% (7/16) were Hispanic/Latino. A total of 12 of the 16 participants (75%) chose to participate in the English sessions. Participants decided to create four types of graphic messages: (1) financial reward, (2) health reward, (3) social norms, and (4) self-efficacy. Meeting 4 times with the 4 groups provided sufficient opportunities for iterative feedback on the graphic messages to reach a consensus on overall quality and content. Conclusions It is feasible and practical to build PR among Black and Latino adolescents focused on vaping prevention. Adolescents added innovation and creativity to the development of culturally and linguistically appropriate graphic messages for vaping prevention. Appropriate staffing, funding, and approaches are key for successful PR efforts among Black and Latino adolescents. Future research is needed to evaluate the impact of the graphic messages on vaping prevention.

Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review

Background Patient and public involvement (PPI) in health research is an area of growing interest. Several studies have examined the use and impact of PPI in knowledge syntheses (systematic, scoping, and related reviews); however, few studies have focused specifically on the patient or public coauthorship of such reviews. Objective This study seeks to identify published systematic and scoping reviews coauthored by patient or public partners and examine the characteristics of these coauthored reviews, such as which journals publish them, geographic location of research teams, and terms used to describe patient or public partner authors in affiliations, abstracts, or article text. Methods We searched CAB Direct, CINAHL, Cochrane Database of Systematic Reviews (Ovid), Embase (Ovid), MEDLINE (Ovid), and PsycInfo from 2011 to May 2019, with a supplementary search of several PPI-focused databases. We refined the Ovid MEDLINE search by examining frequently used words and phrases in relevant search results and searched Ovid MEDLINE using the modified search strategy in June 2020. Results We screened 13,998 results and found 37 studies that met our inclusion criteria. In line with other PPI research, we found that a wide range of terms were used for patient and public authors in author affiliations. In some cases, partners were easy to identify with titles such as patient, caregiver or consumer representative, patient partner, expert by experience, citizen researcher, or public contributor. In 11% (n=4) of studies, they were identified as members of a panel or advisory council. In 27% (n=10) of articles, it was either impossible or difficult to tell whether an author was a partner solely from the affiliation, and confirmation was found elsewhere in the article. We also investigated where in the reviews the partner coauthors’ roles were described, and when possible, what their specific roles were. Often, there was little or no information about which review tasks the partner coauthors contributed to. Furthermore, only 14% (5/37) of reviews mentioned patient or public involvement as authors in the abstract; involvement was often only indicated in the author affiliation field or in the review text (most often in the methods or contributions section). Conclusions Our findings add to the evidence that searching for coproduced research is difficult because of the diversity of terms used to describe patient and public partners, and the lack of consistent, detailed reporting about PPI. For better discoverability, we recommend ensuring that patient and public authorships are indicated in commonly searched database fields. When patient and public-authored research is easier to find, its impact will be easier to measure.

Feasibility and Preliminary Effectiveness of a Peer-Developed and Virtually Delivered Community Mental Health Training Program (Emotional CPR): Pre-Post Study

Background The COVID-19 pandemic has led to a global mental health crisis, highlighting the need for a focus on community-wide mental health. Emotional CPR (eCPR) is a program and practice developed by persons with a lived experience of recovery from trauma or mental health challenges to train community members from diverse backgrounds to support others through mental health crises. eCPR trainers have found that eCPR may promote feelings of belonging by increasing supportive behaviors toward individuals with mental health problems. Thus, clinical outcomes related to positive and negative affect would improve along with feelings of loneliness. Objective This study examined the feasibility and preliminary effectiveness of eCPR. Methods We employed a pre-post design with 151 individuals, including peer support specialists, service users, clinicians, family members, and nonprofit leaders, who participated in virtual eCPR trainings between April 20, 2020, and July 31, 2020. Instruments were administered before and after training and included the Herth Hope Scale; Empowerment Scale; Flourishing Scale (perceived capacity to support individuals); Mindful Attention Awareness Scale; Active-Empathic Listening Scale (supportive behaviors toward individuals with mental health challenges); Social Connectedness Scale (feelings of belonging and connection with others); Positive and Negative Affect Schedule; and University of California, Los Angeles 3-item Loneliness Scale (symptoms and emotions). The eCPR fidelity scale was used to determine the feasibility of delivering eCPR with fidelity. We conducted 2-tailed paired t tests to examine posttraining improvements related to each scale. Additionally, data were stratified to identify pre-post differences by role. Results Findings indicate that it is feasible for people with a lived experience of a mental health condition to develop a program and train people to deliver eCPR with fidelity. Statistically significant pre-post changes were found related to one’s ability to identify emotions, support others in distress, communicate nonverbally, share emotions, and take care of oneself, as well as to one’s feelings of social connectedness, self-perceived flourishing, and positive affect (P≤.05). Findings indicated promising evidence of pre-post improvements (not statistically significant) related to loneliness, empowerment, active-empathetic listening, mindfulness awareness, and hope. Nonprofit leaders and workers demonstrated the greatest improvements related to loneliness, social connectedness, empathic listening, and flourishing. Peer support specialists demonstrated the greatest improvements related to positive affect, and clinicians demonstrated the greatest improvements related to mindfulness awareness. Conclusions Promising evidence indicates that eCPR, a peer-developed and peer-delivered program, may increase feelings of belonging while increasing supportive behaviors toward individuals with mental health problems and improving clinical outcomes related to positive and negative affect and feelings of loneliness.

Diabetes Prevention in Adolescents: Co-design Study Using Human-Centered Design Methodologies

Background The rise in pediatric obesity and its accompanying condition, type 2 diabetes (T2D), is a serious public health concern. T2D in adolescents is associated with poor health outcomes and decreased life expectancy. Effective diabetes prevention strategies for high-risk adolescents and their families are urgently needed. Objective The aim of this study was to co-design a diabetes prevention program for adolescents by using human-centered design methodologies. Methods We partnered with at-risk adolescents, parents, and professionals with expertise in diabetes prevention or those working with adolescents to conduct a series of human-centered design research sessions to co-design a diabetes prevention intervention for youth and their families. In order to do so, we needed to (1) better understand environmental factors that inhibit/promote recommended lifestyle changes to decrease T2D risk, (2) elucidate desired program characteristics, and (3) explore improved activation in diabetes prevention programs. Results Financial resources, limited access to healthy foods, safe places for physical activity, and competing priorities pose barriers to adopting lifestyle changes. Adolescents and their parents desire interactive, hands-on learning experiences that incorporate a sense of fun, play, and community in diabetes prevention programs. Conclusions The findings of this study highlight important insights of 3 specific stakeholder groups regarding diabetes prevention and lifestyle changes. The findings of this study demonstrate that, with appropriate methods and facilitation, adolescents, parents, and professionals can be empowered to co-design diabetes prevention programs.

Does a Pandemic Preempt Participatory Medicine?

For those of us who believe deeply in a collaborative relationship between patients and doctors, the chaos created by the COVID-19 pandemic has brought an uncomfortable question to the fore: Is participatory medicine still relevant during a pandemic? Drawing liberally upon the Jewish tradition of Talmudic reasoning, I would like to offer 3 considered replies: “Yes,” “no,” and “it depends.” Sometimes, patients may have no choice but to cede control to medical professionals, even though patients are still the experts on their own lives. Other times, the shared control of participatory medicine is both an ethical and clinical imperative. However, as the worldwide toll exacted by COVID-19 has made us grimly aware, no one is really in control. That is why, in these uncertain times, the path forward requires maintaining mutual trust between health care providers and patients, whatever the circumstances. After all, it is our bodies and our selves at stake.