Using social media listening to understand barriers to genomic medicine for those living with Ehlers-Danlos syndromes and hypermobility spectrum disorders.

INTRODUCTION: Technological improvements alone have not led to the integration of genomic medicine across a broad range of diseases and populations. For genomic medicine to be successfully implemented across specialties and conditions, the challenges patients and caregivers experience need to be identified using a multi-faceted understanding of the context in which these obstacles occur and how they are experienced. Individuals affected by rare conditions, like Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), express numerous challenges with accessing genomic medicine. Many patients living with rare diseases seek information and find comfort in online health communities. METHODS: Social media conversations facilitated through online health communities are windows into patients' and caregivers' authentic experiences. To date, no other study has examined genomic medicine barriers by analysing the content of social media posts, yet the novel methodological approach of social media listening permits the analysis of virtual, organic conversations about lived experiences. RESULTS/CONCLUSIONS: Using a modified social-ecological model, this study found that social-structural and interpersonal barriers most frequently impede access to genomic medicine for patients and caregivers living with EDS and HSD. PATIENT OR PUBLIC CONTRIBUTION: Data were retrieved through social media conversations facilitated through publicly accessible health communities through Inspire, an online health community. Social media listening permits the analysis of virtual, organic conversations about lived experiences.

Parents' Expectations of High Schools in Firearm Violence Prevention.

Firearm violence remains a significant problem in the US (with 2787 adolescents killed in 2015). However, the research on school firearm violence prevention practices and policies is scant. Parents are major stakeholders in relation to firearm violence by youths and school safety in general. The purpose of this study was to examine what parents thought schools should be doing to reduce the risk of firearm violence in schools. A valid and reliable questionnaire was mailed to a national random sample of 600 parents who had at least one child enrolled in a public secondary school (response rate = 47%). Parents perceived inadequate parental monitoring/rearing practices (73%), peer harassment and/or bullying (58%), inadequate mental health care services for youth (54%), and easy access to guns (51%) as major causes of firearm violence in schools. The school policies perceived to be most effective in reducing firearm violence were installing an alert system in schools (70%), working with law enforcement to design an emergency response plan (70%), creating a comprehensive security plan (68%), requiring criminal background checks for all school personnel prior to hiring (67%), and implementing an anonymous system for students to report peer concerns regarding potential violence (67%). Parents seem to have a limited grasp of potentially effective interventions to reduce firearm violence.

Reducing the Risks of Firearm Violence in High Schools: Principals' Perceptions and Practices.

This study assessed the perceptions and practices of a national sample of secondary school principals regarding reducing firearm violence in high schools. Data were collected via three-wave postal mailings. A 59-item valid and reliable questionnaire was mailed to a national random sample of 800 secondary school principals. Of the 349 principals (46 %) that responded, 17 % reported a firearm incident at their school in the past 5 years. Principals perceived inadequate parental monitoring (70 %), inadequate mental health services (64 %), peer harassment/bullying (59 %), and easy access to firearms (50 %) as the main causes of firearm violence in schools. The three barriers to implementing firearm violence prevention practices were: lack of expertise as to which practices to implement (33 %), lack of time (30 %), and lack of research as to which practices are most effective (30 %). Less than half of schools trained school personnel regarding firearm violence issues. The findings indicate that firearm incidents at schools may be more common than previously thought. A significant portion of principals are at a loss as to what to implement because of a lack of empirical evidence on what is effective. More research is needed to find the most effective school interventions for reducing firearm violence.

African American legislators' perceptions of firearm violence prevention legislation.

Firearm mortality is the leading cause of death for young African American males, however, few studies have focused on racial/ethnic minority populations and firearm violence. The National Black Caucus of State Legislators advocates for legislation that promotes the health of African Americans. Thus, the purpose of this study was to collect baseline data on African American legislators' perceptions regarding firearm violence in the African American community. A cross-sectional study of African American legislators (n = 612) was conducted to investigate the research questions. Of the 612 questionnaires mailed, 12 were not deliverable, and 170 were returned (28%). Utilizing a three wave mailing process, African American legislators were invited to participate in the study. The majority (88%) of respondents perceived firearm violence to be very serious among African Americans. Few (10%) legislators perceived that addressing legislative issues would be an effective strategy in reducing firearm violence among African Americans. The majority (72%) of legislators perceived the most effective strategy to reducing firearm violence in the African American community should focus on addressing societal issues (e.g. crime and poverty). After adjusting for the number of perceived barriers, the number of perceived benefits was a significant predictor of legislators' perceived effectiveness of firearm violence prevention legislation for 8 of the 24 potential firearm violence prevention legislative bills.

Vision impaired or professionally blind: health education research and firearm violence.

In the past three decades, approximately 1 million Americans have been killed with firearms and over 2 million have been injured with firearms. Firearm violence is one of the top 10 causes of premature mortality for racial/ethnic minorities and youths 1 to 19 years of age. However, firearm violence issues are virtually absent in the past 15 years in health education-related journals. We provide several examples of areas of health education where firearm violence is congruent with the professional responsibilities of health educators. Finally, we encourage health educators to become involved in firearm violence research and health education-related journal leaders to become more proactive in soliciting manuscripts that address firearm violence-related issues.

Development of an attribution of racial/ethnic health disparities scale.

The purpose of this study was to develop an Attribution of Racial/Ethnic Health Disparities (AREHD) scale. A convenience sample of undergraduate college students (n = 423) at four Midwestern universities was recruited to respond to the survey. A pilot test with undergraduate students (n = 23) found the survey had good acceptability and readability level (SMOG = 11th grade). Using exploratory factor analysis we found the two a priori subscales were confirmed: individual responsibility and social determinants. Internal reliabilities of the subscales were: individual responsibility (alpha = 0.87) and social determinants (alpha = 0.90). Test-retest stability reliabilities were: individual responsibility (r = 0.72) and social determinants (r = 0.69). The AREHD subscales are satisfactory for assessing college student's AREHD.

University presidents' perceptions and practice regarding the carrying of concealed handguns on college campuses.

OBJECTIVE: To assess the perceptions and practices of a national sample of college and university presidents regarding their support for concealed handguns being carried on college campuses. PARTICIPANTS: The sample for this study consisted of a national random sample of 900 college or university presidents. METHODS: In the spring of 2013, a 3-wave mailing procedure was used to ensure an adequate response rate to a valid and reliable questionnaire. RESULTS: The response rate was 46%, more than what was needed based on the power analysis. The vast majority (95%) of respondents were not supportive of carrying concealed handguns on campuses. They perceived there to be more disadvantages than advantages to handguns on campus. However, college administrators were not focused enough on the primary prevention of campus firearm trauma. CONCLUSIONS: The findings of this study suggest a number of activities that could be implemented to enhance safety on college and university campuses.