Community-based Research to Address Asthma Management and Prevention

Katrina Kubicek, MA, Marisela Robles, MS, Michele D. Kipke, PhD Neal Richman, PhD, Saba Firoozi , MPH, Charlene Chen, MHS, Hannah Valino, MPH

Southern California Clinical and Translational Science Institute, Children’s Hospital Los Angeles, BREATHE California of Los Angeles County, COPE Health Solutions

ABSTRACT • This project represents a partnership between the Community Engagement

program from the Southern California Clinical and Translational Science Institute (SC CTSI), BREATHE California of Los Angeles County (BREATHE LA) - a non-profit organization committed to improving lung health and air quality through education and practice - and COPE Health Solutions, a healthcare management group which facilitates a consortium of community clinics to improve communication and coordination of services.

• This group formed to address the high rates of childhood asthma in the community of Long Beach within Los Angeles County.

• Long Beach is particularly burdened with higher rates of childhood asthma, where asthma affects 21.9% of children ages 5-17, compared with 15.6%, 18%, and 14.2% in LA County, CA and the US respectively. 6

• This project provides guidelines on how to apply community-based participatory research (CBPR) methods to inform the adaptation of an asthma education curriculum designed for after-school settings.

• Asthma is the most common chronic childhood disease in the United States, particularly within minority populations and it is the leading cause of school absence due to chronic disease and accounts for three times more lost school days than any other cause. 1-3, 5-8

• In urban Los Angeles, children living along congested freeways and ports and other industrial areas are at similarly increased risk.2

Interventions for Asthma Management • Over the last several years, we have seen an increase in the provision of asthma

education in school –based settings. 3-4 Providing health-related education in school settings may be an effective method given that children are accustomed to receiving instruction and that the emphasis is typically teaching the child how to manage his/her asthma rather than relying on the parent to do so. 4

• In general, school-based programs were found to be effective in increasing knowledge about asthma.

Afterschool Settings for Health Promotion • Afterschool programs offer a unique opportunity to provide health-related or

other educational materials. With most school districts facing drastic budget cuts and limited time to provide the required coursework, it can be challenging to integrate new information into the school curriculum.

BACKGROUND

METHODS

DATA ANALYSIS AND CONCEPTUAL MODEL

• The conceptual framework for this study was influenced primarily by our research goals and by reviewing other asthma prevention and management curricula. In addition, based on discussions with our CABs, we identified topics that are important for effective asthma management. Using the conceptual model below as a guide, code reports were reviewed and presented to the research team and CAB for further discussion on how to best interpret and integrate the data into the asthma curriculum.

Based on Empowerment Theory and Social Support - both of which have been linked to improved health outcomes

RESULTS

CURRICULUM ADAPTATION The Photovoice sessions helped inform the adaptation of the BREATHE LA asthma curriculum. The Photovoice sessions helped to highlight relevant changes to the curriculum to make it more grounded in the knowledge and experiences of the target population.

Buddy System

One of the unique features of this asthma curriculum is that it is provided to children with and without asthma. Therefore, it is important to identify how those without asthma can use the information provided to them. Data from the Photovoice sessions indicate that children with asthma often feel left out of certain activities. Thus, the resulting curriculum includes a new section in which students are matched with a “buddy”. This buddy system ensures that students with asthma have a friend who can assist them in the event of an asthma attack as well as someone that they can play with in less strenuous activities when they are not feeling well.

Physical Activity

In addition, the Photovoice sessions highlighted the need to educate youth on how children with asthma can engage in physical activities. The resulting curriculum includes a new emphasis on this area and provides some guidance on how children with asthma can be physically active without exacerbating their asthma condition. This is an important inclusion as there is currently a body of research investigating the relationship between asthma and obesity.

Advocacy

Many of the students and parents discussed ways that can change the environments in which they live to make them healthier for people with asthma. Parents recognized the potential risks from the refineries, ports and freeways in their community. While they said they often felt “powerless” to stop them, many of the parents left the Photovoice sessions inspired to try to enact change in their communities. Given the interest trying to evoke change, a new section on advocacy has been introduced into the curriculum. Students are encouraged to take on a project in their homes, school or community to make it safer for them and their friends and family. Activities such as letter writing, poster making and other simple activities have been introduced to encourage students to be more assertive in identifying issues that may be hazardous to their well-being.

CONCLUSION AND NEXT STEPS • This study provides guidelines for how to conduct a CBPR project with the goal of creating a community-driven

and scientifically-grounded asthma curriculum. For example, this is the first asthma curriculum that we have identified that integrates social support as a way to mediate positive health outcomes.

• The next steps for this project will be to take the newly adapted curriculum into an efficacy trial to identify whether the desired outcomes are met.

REFERENCES 1. Akinbami L. The State of Childhood Asthma, United States, 1980–2005. Hyattsville, MD: National Center for Health Statistics; December 29, 2006 2006. 2. Brim S, Rudd R, Funk R, Callahan D. Asthma Prevalence Among US Children in Underrepresented Minority Populations: American Indian/Alaska Native, Chinese, Filipino, and Asian Indian. Pediatrics. July 2008 2008;122(1):e217-e222. 3. Christiansen SC, Zuraw BL. Serving the underserved: School based asthma intervention programs. Journal of Asthma 2002;39(6):463-472. 4. Coffman JM, Cabana MD, Yelin EH. Do school-based asthma education programs improve self-management and health outcomes? Pediatrics 2009;124:729-742. 5. Lieu TA, Lozano P, Finkelstein JA, et al. Racial/ethnic variation in asthma status and management practices among children in managed medicaid. Pediatrics 2002;109(5):857-865. 6. McDaniel M, Paxson C, Waldfogel J. Racial Disparities in Childhood Asthma in the United States: Evidence From the National Health Interview Survey, 1997 to 2003. Pediatrics. 2006;117:e868-e877. 7. Newacheck P, Halfon N. Prevalence, Impact, and Trends in Childhood Disability Due to Asthma. Archives of Pediatrics & Adolescent Medicine. March 2000 2000;154:287-293. 8. Simon P, Zeng Z, Wold C, Haddock W, Fielding J. Prevalence of Childhood Asthma and Associated Morbidity in Los Angeles County: Impacts of Race/Ethnicity and Income. Journal of Asthma. 2003;40(5):535-543. 9. Smith L, Hatcher-Ross J, Werthmeimer R, Kahn R. Rethinking Race/Ethnicity, Income, and Childhood Asthma: Racial/Ethnic Disparities Concentrated Among the Very Poor. Public Health Reports. March/April 2005 2005;120:109-120.

ACKNOWLEDGMENTS National Institutes of Health Grant number UL1RR031986

Boys and Girls Club of Long Beach Staff

Healthcare Community Advisory Board Members Parent Advisory Board Members

Our project was guided by two community advisory boards (CABS). One comprised of healthcare providers and advocates and another comprised of parents of children with asthma. See Figure 1 for details on methods.

Limitations for Children with Asthma The majority of the limitations mentioned by participants had to do with not being able to be physically active. In general, students and parents both felt that participating in physical activity, especially “rough” physical activity, would bring about an asthma attack and therefore limited the activities in which children with asthma could participate. One student spoke about the competitive nature that he had and how he had to fight against the desire to compete with his friends while still being cognizant of his health: “If other people challenge you and you want to take the challenge, and you know you can’t but you are competitive so at the end, you’re out of breath and might have an asthma attack.” A less common but still present theme related to limitations was participants identifying the inability to play, pet or be around animals and pets such as cats. “If they [children] have asthma they can’t touch them [pets] or pet them… or get near them… they get asthma.” Social Support Given the high rates of asthma in the surrounding community, all of the children and parents involved in the Photovoice session had someone close to them (friend or family member) who was diagnosed with asthma. Thus, issues related to what to do if you see a friend having an asthma attack were often discussed. One student reported that she would often give her friends advice on what activities they should do: “My friend said let’s go racing, and I said, ‘no you can’t because you have asthma,’ and then he started running and he had to stop and use his inhaler.” This is further complicated by the sense of isolation and loneliness that children with asthma may feel if they are unable to play with their friends and classmates Advocacy A final theme that emerged that was integrated into the resulting curriculum was the idea of advocacy in the home, school and community. Students felt very passionate about people not smoking around them . Parents too reported that smoking was a major trigger of asthma symptoms and that this was something that was difficult to control. In addition to this issue of smoking in apartment buildings, some parents also spoke about the conditions of their apartments and the unwillingness of owners to address things such as smoking or making improvements to the buildings. Parents also commonly spoke about their surrounding community and how the ports, refineries, local airport and large freeways all contribute to the environmental issues in their neighborhoods. One parent brought in a picture of a refinery that is located near the childcare agency in which she works: “I have a picture of the refineries. I work close to it in the childcare. There are kids there who already come with asthma, but they have to withdraw because the smoke from the refineries aggravates their asthma.”