The Role of Online Social Support in Supporting and Educating Parents of Young Children With Special Health Care Needs in the United States: A Scoping Review

Background: When parents of young children with special health care needs (CSHCN) receive their child’s diagnosis, they encounter information they may not understand, emotions they may not know how to cope with, and questions about their child’s immediate and long-term future that frequently lack answers. The challenge of health care providers is how to prepare parents for caring for their CSHCN, for coping with any resulting challenges, and for accessing the systems and services that can assist them. Objective: The purpose of this work was to review evidence of the information and support needs of parents of young CSHCN and to determine whether online social support can serve as an avenue for learning and empowerment for these parents. Methods: A scoping review identified the challenges, coping mechanisms, and support needs among parents of CSHCN, and the reach and effectiveness of digital technologies with these families and health care providers. We also conducted interviews with professionals serving parents of CSHCN. Results: The literature review and interviews suggested that parents best learn the information they need, and cope with the emotional challenges of raising a CSHCN, with support from other parents of CSHCN, and that young parents in recent years have most often been finding this parent-to-parent support through digital media, particularly social media, consistent with the theory of online social support. Evidence also shows that social media, particularly Facebook, is used by nearly all women aged 18-29 years across racial and socioeconomic lines in the United States. Conclusions: Parents of young CSHCN experience significant stress but gain understanding, receive support, and develop the ability to care for and be advocates for their child through parent-to-parent emotional and informational social support. Online social support is most effective with young adults of childbearing age, with social media and apps being the most useful within the theoretical framework of social support. This opens new opportunities to effectively educate and support parents of young CSHCN. Providers seeking to inform, educate, and support families of CSHCN should develop strategies to help parents find and use social support through digital resources to facilitate their emotional adjustment and practical abilities to care for and access services for their child. [J Med Internet Res 2016;18(12):e333

Depressive Symptoms and Health-Related Quality of Life Among Participants in the Pasos Adelante Chronic Disease Prevention and Control Program, Arizona, 2005-2008

Introduction Chronic diseases are the leading causes of death in the United States and have been associated with depressive symptoms and poor health-related quality of life (HRQOL). This study examined whether depressive symptoms and HRQOL indicators changed among participants in Pasos Adelante, a chronic disease prevention and control program implemented in a US–Mexico border community. Methods Pasos Adelante was a 12-week promotora-led program that included educational sessions and walking groups. We used the Centers for Epidemiologic Studies Depression Scale (CES-D) and the Center for Disease Control’s “Healthy Days” measures to measure depressive symptoms and HRQOL. We used linear mixed-effects models and general estimating equations to analyze changes in CES-D scores and HRQOL indicators from baseline to postprogram and from postprogram to 3-month follow-up. Results At baseline, participants had a mean of 7.1 physically unhealthy days, 7.4 mentally unhealthy days, and 3.9 days of activity limitation. The mean number of physically and mentally unhealthy days declined significantly from baseline to postprogram, but the mean number of activity limitation days did not. At baseline, 42.6% of participants reported their health as fair/poor; 20.8% of participants reported frequent mental distress, and 31.8% had a CES-D score of 16 or more. All 3 proportions declined from baseline to postprogram. No significant changes occurred between postprogram and follow-up. Conclusion Participants in Pasos Adelante showed improvement in depressive symptoms and several HRQOL indicators. Future studies should use an experimental design with a comparison group to determine whether these findings can be replicated and to examine potential mediators and moderators of program effects

Pasos Adelante: The Effectiveness of a Community-based Chronic Disease Prevention Program

BACKGROUND: Implementing programs that target primary prevention of chronic diseases is critical for at-risk populations. Pasos Adelante, or "Steps Forward," is a curriculum aimed at preventing diabetes, cardiovascular disease, and other chronic diseases in Hispanic populations. Pasos Adelante is adapted from the National Heart, Lung, and Blood Institute's cardiovascular disease prevention curriculum, Su Corazón, Su Vida, and includes sessions on diabetes and community advocacy and incorporates walking clubs. CONTEXT: The Pasos Adelante curriculum was implemented in two Arizona, United States-Sonora, Mexico border counties. Key issues in these communities are safety, access to recreational facilities, climate, and cultural beliefs. METHODS: Pasos Adelante is a 12-week program facilitated by community health workers. The program includes interactive sessions on chronic disease prevention, nutrition, and physical activity. Evaluation of the program included precurriculum and postcurriculum questionnaires with self-reported measures of physical activity and dietary patterns. Approximately 250 people participated in the program in Yuma and Santa Cruz counties. CONSEQUENCES: Postprogram evaluation results demonstrate a significant increase in moderate to vigorous walking among participants and shifts in nutritional patterns. INTERPRETATION: The Pasos Adelante program demonstrates that an educational curriculum in conjunction with the support of community health workers can motivate people in Arizona/Sonora border communities to adopt healthy lifestyle behaviors

Effectiveness of the Pasos Adelante Chronic Disease Prevention and Control Program in a US-Mexico Border Community, 2005-2008

Introducción "Pasos Adelante" es un programa de intervención sobre hábitos saludables facilitado por trabajadores de salud comunitaria o"promotores de salud" destinado a prevenir y controlar enfermedades crónicas en mexicoamericanos. Los estudios iniciales de"Pasos Adelante" mostraron mejoras significativas en la alimentación y la actividad física autorreportadas por los participantes.Este estudio evaluó si los habitantes de una comunidad en la frontera estadounidense que participaron en el programa mostraronmejorías en determinados valores fisiológicos y si los cambios se mantuvieron en el seguimiento a los 3 meses. Métodos El programa se llevó a cabo en sesiones de 12 semanas de enero del 2005 a mayo del 2008 e incluyó grupos de caminata y clases denutrición y actividad física. Se realizaron cuestionarios, mediciones antropométricas y pruebas de laboratorio al inicio delprograma (n = 305), al final (n = 254) y en el seguimiento a los 3 meses (n = 221). Resultados Al compararse los datos iniciales de referencia con los del final del programa, los participantes mostraron reducciones en su índicede masa corporal (P= .04), circunferencia de cintura y cadera (P< .001), presión arterial diastólica y sistólica (P< .001) y colesterol total (P= .008). Ningún valor empeoró significativamente entre la conclusión del programa y el seguimiento, aexcepción de la presión arterial sistólica. Los niveles de glucosa mejoraron entre la finalización y el seguimiento del programa (P=.01). Conclusión Estos resultados sustentan los hallazgos iniciales referidos a la mejoría autorreportada por los participantes en relación conpatrones de alimentación y actividad física al mostrar cambios en medidas objetivas. Este programa basado en la evidenciademuestra el potencial de los programas de control y prevención de enfermedades crónicas llevados a cabo por promotores desalud para mejorar la salud física abordando la prevención primaria y secundaria en organizaciones y comunidades hispanas

Depressive Symptoms and Health-Related Quality of Life Among Participants in the Pasos Adelante Chronic Disease Prevention and Control Program, Arizona, 2005-2008

Introduction Chronic diseases are the leading causes of death in the United States and have been associated with depressive symptoms and poor health-related quality of life (HRQOL). This study examined whether depressive symptoms and HRQOL indicators changed among participants in Pasos Adelante, a chronic disease prevention and control program implemented in a US–Mexico border community. Methods Pasos Adelante was a 12-week promotora-led program that included educational sessions and walking groups. We used the Centers for Epidemiologic Studies Depression Scale (CES-D) and the Center for Disease Control’s “Healthy Days” measures to measure depressive symptoms and HRQOL. We used linear mixed-effects models and general estimating equations to analyze changes in CES-D scores and HRQOL indicators from baseline to postprogram and from postprogram to 3-month follow-up. Results At baseline, participants had a mean of 7.1 physically unhealthy days, 7.4 mentally unhealthy days, and 3.9 days of activity limitation. The mean number of physically and mentally unhealthy days declined significantly from baseline to postprogram, but the mean number of activity limitation days did not. At baseline, 42.6% of participants reported their health as fair/poor; 20.8% of participants reported frequent mental distress, and 31.8% had a CES-D score of 16 or more. All 3 proportions declined from baseline to postprogram. No significant changes occurred between postprogram and follow-up. Conclusion Participants in Pasos Adelante showed improvement in depressive symptoms and several HRQOL indicators. Future studies should use an experimental design with a comparison group to determine whether these findings can be replicated and to examine potential mediators and moderators of program effects

Inequitable Chronic Lead Exposure: A Dual Legacy of Social and Environmental Injustice

Both historic and contemporary factors contribute to the current unequal distribution of lead in urban environments and the disproportionate impact lead exposure has on the health and well-being of low-income minority communities. We consider the enduring impact of lead through the lens of environmental justice, taking into account well-documented geographic concentrations of lead, legacy sources that produce chronic exposures, and intergenerational transfers of risk. We discuss the most promising type of public health action to address inequitable lead exposure and uptake: primordial prevention efforts that address the most fundamental causes of diseases by intervening in structural and systemic inequalities

The Purdue Extension and Indiana CTSI's Community Health Partnerships collaboration: An innovative, generalizable, state-wide model to help communities build a culture of health

The Indiana Clinical and Translational Sciences Institute's Community Engagement Partners-Purdue Extension collaborative model demonstrates tremendous potential for creating state-wide programmatic efforts and improvements in both the health culture and status of Indiana residents across the state. It can serve as a prototype not only for others interested in pursuing wide geographic health improvements through Clinical and Translational Sciences Award-Cooperative Extension partnerships but also for broader collaborations among United States Department of Agriculture, National Institutes of Health, Centers for Disease Control and Prevention, state and local health departments, and health foundation efforts to improve population health

The School Health Index as an Impetus for Change

BACKGROUND: The increase in childhood obesity and prevalence of chronic disease risk factors demonstrate the importance of creating healthy school environments. As part of the Border Health Strategic Initiative, the School Health Index was implemented in public schools in two counties along the Arizona, United States-Sonora, Mexico border. Developed in 2000 by the Centers for Disease Control and Prevention, the School Health Index offers a guide to assist schools in evaluating and improving opportunities for physical activity and good nutrition for their students. CONTEXT: Between 2000 and 2003, a total of 13 schools from five school districts in two counties participated in the School Health Index project despite academic pressures and limited resources. METHODS: The Border Health Strategic Initiative supported the hiring and training of an external coordinator in each county who was not part of the school system but who was an employee in an established community-based organization. The coordinators worked with the schools to implement the School Health Index, to develop action plans, and to monitor progress toward these goals. CONSEQUENCES: The School Health Index process and school team participation varied from school to school. Individual plans were different but all focused on reducing in-school access to unhealthy foods, identified as high-fat and/or of low nutritional value. Ideas for acting on this focus ranged from changing the content of school lunches to discontinuing the use of nonnutritious foods as classroom rewards. All plans included recommendations that could be implemented immediately as well as those that would require planning and perhaps the formation and assistance of a subcommittee (e.g., for developing or adopting a district-wide health curriculum). INTERPRETATION: After working with the School Health Index, most schools made at least one immediate change in their school environments. The external coordinator was essential to keeping the School Health Index results and action plans on the agendas of school administrators, especially during periods of staff turnover. Staff turnover, lack of time, and limited resources resulted in few schools achieving longer-term policy changes

The School Health Index as an Impetus for Change

Background The increase in childhood obesity and prevalence of chronic disease risk factors demonstrate the importance of creating healthy school environments. As part of the Border Health Strategic Initiative, the School Health Index was implemented in public schools in two counties along the Arizona, United States-Sonora, Mexico border. Developed in 2000 by the Centers for Disease Control and Prevention, the School Health Index offers a guide to assist schools in evaluating and improving opportunities for physical activity and good nutrition for their students. Context Between 2000 and 2003, a total of 13 schools from five school districts in two counties participated in the School Health Index project despite academic pressures and limited resources. Methods The Border Health Strategic Initiative supported the hiring and training of an external coordinator in each county who was not part of the school system but who was an employee in an established community-based organization. The coordinators worked with the schools to implement the School Health Index, to develop action plans, and to monitor progress toward these goals. Consequences The School Health Index process and school team participation varied from school to school. Individual plans were different but all focused on reducing in-school access to unhealthy foods, identified as high-fat and/or of low nutritional value. Ideas for acting on this focus ranged from changing the content of school lunches to discontinuing the use of nonnutritious foods as classroom rewards. All plans included recommendations that could be implemented immediately as well as those that would require planning and perhaps the formation and assistance of a subcommittee (e.g., for developing or adopting a districtwide health curriculum). Interpretation After working with the School Health Index, most schools made at least one immediate change in their school environments. The external coordinator was essential to keeping the School Health Index results and action plans on the agendas of school administrators, especially during periods of staff turnover. Staff turnover, lack of time, and limited resources resulted in few schools achieving longer term policy changes