Investigator/IRB-led community communication in genetic research: A descriptive feasibility pilot study

This pilot study, conducted in the Houston, TX, area, established a structured dialogue among a university Institutional Review Board, its researchers, and its local community members (i.e. pool of potential research participants) for the purpose of further educating all three parties about genetic research and community concerns related to such research. An IRB-designed educational presentation aimed at assisting potential subjects in making an informed decision to participate in genetic research was provided to four community groups (n=54); this presentation also included a current example of genetic research being conducted in the community as explained by the researcher, and a question-and-answer session designed to assist the IRB and the researcher in understanding the community's concerns about genetic research. Comparisons of pre- and post- presentation community questionnaires indicate that the joint presentation was effective in increasing community knowledge about genetic research, most notably related to the risks and benefits of this research to the individual, as well as the understanding that protections are in place for research participants. While researchers are optimistic about the idea of a collaborative effort with the IRB and the community, the feasibility of such a program and the benefit to the participating researchers remain unclear; additional research is necessary to establish the most effective method of communication for all groups involved, as well as to obtain statistically significant results with regard to race/ethnicity, gender, and education levels of community participants. ^

Camp For All Connection: a community health information outreach project

Purpose: The purpose of the Camp For All Connection project is to facilitate access to electronic health information resources at the Camp For All facility. Setting/Participants/Resources: Camp For All is a barrier-free camp working in partnership with organizations to enrich the lives of children and adults with chronic illnesses and disabilities and their families by providing camping and retreat experiences. The camp facility is located on 206 acres in Burton, Texas. The project partners are Texas Woman's University, Houston Academy of Medicine-Texas Medical Center Library, and Camp For All. Brief Description: The Camp For All Connection project placed Internet-connected workstations at the camp's health center in the main lodge and provided training in the use of electronic health information resources. A train-the-trainer approach was used to provide training to Camp For All staff. Results/Outcome: Project workstations are being used by health care providers and camp staff for communication purposes and to make better informed health care decisions for Camp For All campers. Evaluation Method: A post-training evaluation was administered at the end of the train-the-trainer session. In addition, a series of site visits and interviews was conducted with camp staff members involved in the project. The site visits and interviews allowed for ongoing dialog between project staff and project participants.

Commentary on “Connecting the Dots: Families and Children with Special Needs in a Rural Community”

Starks et al. discuss an evaluation of educational initiatives to improve rural systems of care for children with special needs. Akin to the medical home neighborhood concept, building a holistic medical "village" entails improving collaboration, sharing accountability, and helping families to navigate the health care system. The article suggests that policymakers should include patient experiences of care in program evaluation, and they should build a community infrastructure for shared information and efficient communication.

Using service-learning to encourage community health advocacy among high school students

The project outlined throughout this program management plan aims to develop a health-focused student advocacy group in the San Antonio Independent School District (SAISD). At its core, this project will be an opportunity for SAISD students to engage in service-learning, through which they will learn and develop by designing, organizing and participating in meaningful public health service experiences. ^ This program management plan addresses the genuine need for public health community education by using the service-learning model as a framework to engage students to effect change. The plan delineates the process by which the student advocacy group is to be assembled, selection of service-learning project, project objectives, technical objectives, and communication requirements. Ideally, the plan should help to facilitate project coordination, communication, and planning, and to support the direction of resources. The appendices that follow also provide useful tools with which to follow through with project implementation. ^ The plan is about more than providing a tool to educate students about the health issues in their community. It is about providing a way to teach health advocacy and self-interest and encourage civic engagement via public health. Students have the potential to positively effect lasting change among their peers, in their schools and in the community.^

Engaging stakeholders in community-level obesity prevention programming: Evaluation of the Fit Family Challenge

Introduction: Both a systems approach to change and a focus on multi-sector interventions ensures obesity prevention programming within the community is equitable, sustainable, and cost-effective. An authentic community engagement approach is required to implement interventions guided by best-evidence research and practice. Although there are examples illustrating the benefits of community engagement, there is no standardized method to implement it. The San Antonio Sports Foundation (SA Sports), a non-profit community-based organization, implements a variety of free events and programs promoting active life styles. One such program is the Fit Family Challenge which is a summer-long program implemented at the school level targeted at families. ^ Aims: This thesis was a culmination of the experience from the student collaborating with SA Sports as part of a practicum opportunity. Using secondary data collected by the Fit Family Challenge during the 2011 year, the goals of this thesis were: to assess individual changes; evaluate short-term impact; and describe the community engagement process. ^ Methods: SA Sports collected quantitative and qualitative data during the implementation and evaluation of the FFC program. SA Sports allowed the used of de-identified data to be analyzed to study the aims of this thesis. ^ Results: The program was able to provide families with the knowledge, information, and opportunity to exercise as a family and cook healthier meals. School district coordinators were generally satisfied and illustrated the benefits of a community partnership. An authentic community engagement was present highlighting the importance of communication, collaboration and the sustainability of such partnerships in the community. ^ Conclusion: The success of an obesity program should focus on triggers that initiate behavioral change rather than physiological changes. The evaluation was guided by a community engagement approach, which illustrated the development of new partnerships and the strengthening of other collaborations. Ultimately, the engagement approach empowered the community to identify their own problems and build collaboration, rather than tackling obesity prevention alone. ^

Use of empowerment evaluation to determine a sustainability plan for a community-based preconception care program

Women With IMPACT (WWI) is a community-based preconception care educational intervention. WWI is being implemented by the Impacting Maternal and Prenatal Care Together (IMPACT) Collaborative and targets zip codes in Harris County, Texas at high risk for infant mortality, low birthweight, and preterm birth. WWI started March 2012 and continues through August 2013. Three workshop series are planned. This study was conducted with participants and facilitators from the first workshop series. This study aimed to 1) evaluate the WWI program using empowerment evaluation, 2) engage all WWI stakeholders in an empowerment evaluation so the method could be adopted as a participatory evaluation process for future IMPACT activities, and 3) develop recommendations for sustainability of the WWI intervention, based on empowerment evaluation findings and results from the pre/post program evaluation completed by WWI participants. Study participants included WWI participants and facilitators and IMPACT Collaborative Steering Committee members. WWI participants were female, 18-35 year-old, non-pregnant residents of zip codes at high risk of adverse birth outcomes. All other study participants were 18 years or older. A two-phased empowerment evaluation (EE) was utilized in this study. Sessions 1-4 were conducted independently of one another – 3 with participants at different sites and one with the facilitators. The fifth session included WWI participant and facilitator representatives, and IMPACT Steering Committee members. Session 5 built upon the work of the other sessions. Observation notes were recorded during each session. Thematic content analysis was conducted on all EE tables and observation notes. Mission statements drafted by each group focused on improvement of physical and mental health through behavior change and empowerment of all participants. The top 5 overall program components were: physical activity, nutrition, self-worth, in-class communication, and stress. Goals for program improvement were set by EE participants for each of these components. Through thematic content analysis of the tables and observation notes, social support emerged as an important theme of the program among all participant groups. Change to a healthy lifestyle emerged as an important theme in terms of program improvement. Two-phased EE provided an opportunity for all program stakeholders to provide feedback regarding important program components and provide suggestions for program improvement. EE, thematic content analysis, pre/post evaluation results, and inherent program knowledge were triangulated to make recommendations to sustain the program once the initial funding ends. ^