By Lisa Hynes
Dr Lisa Hynes is a post-doctoral research fellow with the sPLAT (Pediatric Lab for Adherence and Transition) team at West Virginia University in Morgantown. Lisa completed her undergrad, MSc and PhD at NUI Galway, co-founded the NUIG Health Psychology Blog, and is a much loved associate member of the Health Behaviour Change Research Group at NUI Galway.
West Virginia, Mountain Momma…
Almost heaven, wild, wonderful, mountaineer country, mountain state…all phrases lovingly associated with West Virginia, a beautiful and extremely proud (Go Mountaineers!) state in the Appalachian region of the USA, and my adopted home. First, yes, they do LOVE Country Roads, and no, they are NOT familiar with the remix we all went wild to on the dancefloors of the early noughties!
Having always wanted to spend some time living in the US, it was really a dream come true to secure a job as a postdoctoral research fellow with the sPLAT (Pediatric Lab for Adherence and Transition) team at West Virginia University in Morgantown. Located 6 miles south of the border with Pennsylvania, Morgantown is a small but bustling, and extremely hilly, university town (again, Go Mountaineers!).
My role here is to coordinate a large federally funded study to develop and pilot test novel, picture-based action plans for children and adolescents with asthma for improving asthma management and health outcomes. Through this role, I have had a crash course in what it means to live and work in the US, with the added bonus of a rather contentious presidential election thrown in for good measure! (Note: Favourite election related sign, ‘No matter who is president, Jesus is always King’…can’t argue with that!!)
Take Action for Asthma Control (TAAC) Study
The Take Action for Asthma Control (TAAC) Study is a 3-year study that aims to develop software for doctors to generate tailored pictorial asthma action plans (PAAPs) to guide young people and their families to manage asthma. Asthma is the most common chronic condition in children, managed through a combination of daily inhaled and oral medications and avoidance of environmental triggers such as pollen or strong chemicals.
An Asthma Action Plan (AAP) is a one-page summary of strategies for managing asthma on a daily basis, when an individual is experiencing no symptoms, moderate symptoms and severe symptoms. AAPs are a featured of recommended care according to US asthma management guidelines. However, research and anecdotal accounts demonstrate that AAPs are not widely utilized, despite evidence of effectiveness for supporting self-management. Low use of AAPs has been associated with their format, characterized by difficult medical terminology, high levels of text, assumptions made by asthma service providers regarding the capability of families to understand them, and low confidence among families to engage with them.
Intervention Development in Context
Across West Virginia and the Appalachian region, social issues such as poverty and living in isolated rural areas are associated with education, employment and access to specialist health services.
Appropriate health education tools and self-management supports are particularly important among these populations, which may be effected by literacy, health literacy and health service access problems. Health literacy is about an individual’s knowledge and understanding of health information and their ability to act on this knowledge to make decisions and use health services. Research continues to show that service providers struggle to appreciate how difficult it is for individuals and families to understand and act on the information they give them, and to adjust their communication style to the needs of service users.
Dr. Christina Duncan, the TAAC Study Principal Investigator and director of the sPLAT Team identified the need to rethink the format of asthma education tools after many years of experience as an adherence researcher, working with diverse populations.So, the TAAC Study took on the challenge of rethinking the format of an existing asthma education tool, that could be integrated within routine clinic interactions and meet the needs of rural families with a child with asthma, from a diverse range of socio-economic backgrounds. The main strategies we have used to meet the challenges set by this study are to identify relevant technology solutions and to engage stakeholders in the development and pilot testing process. Through a step by step process including the development of a PAAP prototype, focus groups with young people with asthma, their parents, and asthma service providers, software programing and pilot testing, the PAAP software has been developed.
Lessons in Collaboration
I’m really not sure whether I’ve learned more in the last 9 months about developing technology-supported interventions or about paying bills AND filing taxes all by myself, but without a doubt the most valuable lesson I’ve learned is about collaboration. Stakeholder-led iterative software development is recommended for developing user-friendly and appealing tools. We are lucky not to be short of willing collaborators, in the form of a health-focused software development company, a panel of physician advisors and local pairs of young people with asthma and their parents. But the lessons I’ve learned taught me the benefits of adding structures to the development process to harness and make the most of all that willingness!
Throughout the process of gathering input, developing the software tool, pilot testing and integrating feedback, the hands-on involvement of a member of the software programing team is essential, for example inviting your programmer to focus groups or to review interview transcripts. We speak different languages so we need to welcome each other into our worlds to work together effectively. A particularly useful lesson for me was to provide feedback on the software in the format software programmers use, so detailed flowcharts accounting for every step in the system, if A then B, if C then D etc.
Guidelines are often broad to account for complexities from one person’s asthma to another. When designing tools for managing health conditions another important consideration is, do you want to base the tool on established guidelines for management or is more flexibility required?
Finally, you have to draw the line in development somewhere. Developing technology is time consuming, complex and expensive and it is very difficult to please everyone. In this case, our end-users are doctors, but the product of the tool is for young people and families. Addressing the needs of all stakeholders with the first or second version of your software is very unlikely, so try to be clear on your development and research aims, and know from the start that your work is going to involve multiple stages. Although this process is challenging and costly, person-centered technology development has the potential to produce really valuable products and to address the needs of all kinds of end-users, from service providers to children and families, in all kinds of contexts.
We are just about to dive into a pilot study to find out how young people with asthma, their parents, and asthma service providers respond to a picture-based versus a written AAP and whether the type of AAP a young person has influences things like their understanding of asthma treatment, engagement in the study (such as making it to follow-up study appointments), and the way asthma is managed in the clinic and at home.
The geographical and demographic characteristics of the U.S mean that when designing health promotion tools and interventions, researchers may have to consider language, distance from a hospital, family dynamics, education, religion, insurance, billing, staffing, socio-economic status, and access to technology on a mind-boggling scale. The word here is ‘Smart’. Everyone’s aim is to do the smart thing. For example, being a smart consumer is considered a strength, rather than shallow and materialistic. This experience among other things has made me consider questions like, what drives the Irish health service and would a clearer understanding of our health service drivers help Irish health researchers and service providers play to our strengths better, to be smart. As the summer weather rolls in and recruitment for the TAAC Study kicks off, I find myself excited, and maybe a little apprehensive, to find out what’s next in this US adventure!