Empowering Young People to Take Control of their Health
Living with a chronic condition like inflammatory bowel disease (IBD) can be extremely challenging for teenagers. Navigating the physical and emotional demands of managing IBD on top of the typical stresses of adolescence is no easy feat. However, there is hope – a new self-led self-management intervention called ASSIST-IBD is empowering young people to take control of their health and find strategies to overcome adherence obstacles.
ASSIST-IBD is an evidence-based, theory-driven digital program co-developed by young people living with IBD. It aims to help teens aged 13-17 feel more confident in following their treatment plan, develop skills to manage their condition, communicate effectively about IBD, and maintain a positive outlook on the future. By putting the user in the driver’s seat, ASSIST-IBD allows young people to customize the program to their unique needs and take an active role in their health journey.
Understanding the Challenges of IBD in Teens
Affecting around 25 in every 100,000 young people aged 10-16 in the UK, IBD is a serious and often debilitating condition that involves inflammation of the digestive system. This can cause a range of distressing symptoms, including abdominal pain, fatigue, and diarrhea. To successfully manage IBD, young people must perform a complex set of health behaviors, such as taking medication, monitoring symptoms, attending medical appointments, and following lifestyle advice.
Adolescence is a particularly challenging time, as young people navigate independence, peer relationships, and the typical stresses of growing up. Given this developmental context, it’s unsurprising that teens with IBD are at high risk of treatment non-adherence – with rates reported as high as 93%. Barriers to adherence can include forgetting, lack of time, interference with social activities, fatigue, family beliefs about medication, and embarrassment about taking medication in front of friends.
Failing to follow a prescribed treatment plan can have serious consequences for young people with IBD, leading to poor health outcomes, increased need for hospitalization and surgery, and higher healthcare costs. Yet, despite this critical need, there is a significant lack of successful interventions to support treatment adherence in this population.
Introducing ASSIST-IBD: A New Approach to Self-Management
ASSIST-IBD is a pioneering digital program that aims to fill this gap. It was developed using extensive qualitative research and co-production work with young people living with IBD. Unlike previous interventions, ASSIST-IBD takes a holistic approach to treatment adherence, addressing not just medication-taking, but also health communication and lifestyle behaviors.
The program consists of 10 interactive modules that guide young people through strategies to:
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Feel Confident to Follow their Treatment Plan: Teens learn how to create personalized action plans to overcome their unique adherence barriers, whether that’s remembering medications, attending appointments, or sticking to dietary advice.
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Develop Skills to Overcome Adherence Obstacles: Through interactive activities, videos, and podcasts, users build problem-solving abilities, learn to manage setbacks, and foster resilience in the face of challenges.
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Feel Confident When Talking to Others About IBD: ASSIST-IBD helps young people develop effective communication skills to discuss their condition with family, friends, and healthcare providers.
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Feel Positive About the Future: The program empowers teens to adopt a hopeful mindset, set achievable goals, and envision a bright future despite the difficulties of living with IBD.
A parent version of ASSIST-IBD has also been developed to support the transition to adulthood and adult healthcare services. Young people are encouraged to discuss their action plans with their parents, fostering collaboration and a shared understanding of the self-management journey.
Evaluating the Feasibility of ASSIST-IBD
While the ASSIST-IBD prototype has been well-received by young people and parents, further research is needed to formally assess its feasibility and effectiveness. A new study, funded by Crohn’s and Colitis UK, aims to do just that.
The study will involve 24 young people aged 13-17 who are identified as being 80% or less adherent to their treatment plan. Participants will use ASSIST-IBD for 6-12 weeks, with the research team collecting both qualitative and quantitative data to evaluate the program’s feasibility and preliminary effectiveness.
Key areas of focus will include:
- Recruitment and Retention: Determining the best strategies to identify and engage the target population, as well as factors influencing participation and continued engagement.
- Intervention Acceptability: Exploring young people’s and parents’ experiences, satisfaction, and views on the usefulness of ASSIST-IBD’s content and delivery.
- Outcome Measurement: Assessing the feasibility and utility of tools to measure changes in treatment adherence, quality of life, and well-being.
The research will also gather valuable insights from an active Patient and Public Involvement and Engagement (PPIE) group, comprising young people with IBD and their parents. This group will provide guidance on the study protocol, contribute to data analysis, and advise on dissemination activities.
Empowering Young People to Take Charge of their Health
By putting young people at the heart of the intervention’s development and evaluation, ASSIST-IBD aims to empower teens with IBD to take an active role in managing their condition. The program’s focus on building self-efficacy, problem-solving skills, effective communication, and a positive mindset reflects the key ingredients for successful self-management.
Ultimately, ASSIST-IBD seeks to support young people with IBD in developing the confidence and strategies they need to thrive, not just survive. By embracing a self-led approach, the program aims to help teens feel in control of their health, weather the challenges of their condition, and look forward to a brighter future.
If you would like to learn more about ASSIST-IBD or get involved in the ongoing research, please visit the Stanley Park High School website or contact the research team at [email protected].
