Digital health to support children (and their families) living with ADHD: exploring digital exclusion.
How can researchers redress digital exclusion in digital health studies? How can children with ADHD and their families benefit from “just-in-time-adaptive-intervention”?
ADHD is one of the most common neurodevelopmental disorders of childhood, causing serious impairment for around 5% of young people, with long-term impacts on physical and mental health. There are evidence-based treatments for paediatric ADHD, but families often find it challenging to implement these. “Just-in-time-adaptive-interventions” (JITAIs) can improve the implementation of health interventions by adapting support to the individual, providing the right intervention, at the right time. JITAIs analyse real-time health data (e.g. physiological states, health behaviours), to determine if and what type of intervention is need. The JITAI then delivers the targeted intervention in real-time.
In the 21st Century, healthcare is going digital. For example, the NHS long-term plan envisions digitally-enabled services as the mainstream. We also face health inequalities, with the NHS long-term plan making a commitment to reducing health inequalities. The grand challenge for society is that the digital evolution could exacerbate health inequalities; digital exclusion is most common in groups experiencing the greatest health inequalities. We feel passionately about designing a digital health future that is inclusive and equitable for the whole of society. To achieve this, it is critical to prioritise the involvement of those most at risk of being underrepresented and excluded.
What will the project involve?
This project consists of an interdisciplinary research team spanning Health Sciences and Engineering. The team are interested in health technologies to help children (and their families) living with attention deficit hyperactivity disorder (ADHD). Their vision is to co-design, develop and evaluate a “just-in-time-adaptive-intervention” (JITAI) for paediatric ADHD.
There are no existing JITAIs for paediatric ADHD. As a first step towards developing a JITAI, the team have developed smartwatch and smartphone applications to collect real-time health data from families living with ADHD. The team are undertaking a pilot study, asking families to test the technology and provide feedback to refine the system. In delivering this pilot study, the researchers are acutely aware of the inclusion criterion for families to have access to a stable internet connection and a smartphone (we are supplying smartwatches). The researchers are also acutely aware of selection bias – those families able and confident in using technology are more likely to participate.
The research team are conscious of digital exclusion and health inequalities. There is a close correlation between digital exclusion and social disadvantages including lower income, lower levels of education, and poor housing. It is these very groups who are likely to have the greatest health needs. This is true for ADHD, which is most prevalent among those from social disadvantaged backgrounds.
The projects seeks to engaging with families living with ADHD who are digitally excluded/underrepresented in digital health research. The project aims to undertake co-design research with this group to design inclusive technology and identify systemic factors likely to improve digital health inclusion. As a first step, the team will consult with families with ADHD who are digitally excluded/underrepresented in digital health research, with an aim to:
- Co-produce a research agenda for our next phase of co-design research
- Identify co-design methods likely to be inclusive for underrepresented groups, considering study design, study materials, recruitment strategies, and what might motivate underrepresented groups to participate.
- Gain initial insights into concerns around and barriers to using health technologies for paediatric ADHD
- Develop a network of individuals who would like to partner the next phase of co-design.
This will involve one-to-one consultation sessions, lasting up to 60 minutes, in a setting comfortable to the family, e.g. their home, their child’s school (if feasible), a feasible community venue, or online.
Who are the team and what do they bring?
- Amberly Brigden (Engineering, Mathematics and Technology, University of Bristol) is a health psychologist and a member of the Bristol Population Health Science institute. They have published work on the use of digital tools in health, particularly in paediatric health.
- Jon Bird (Computer Science, University of Bristol) is a researcher who has pariticpated in multiple projects exploring the relationship between digital technologies and health ranging from exploring social media and eating disorders to app data and patient doctor relations.
- Lauren Thompson (Engineering Mathematics and Technology, University of Bristol) is a PhD researcher exploring fatigue management in children with ME/CFS. She is interested in exploring how technology can support individuals with self-managing their health.
- Sydney Charitos (Engineering Mathematics and Technology, University of Bristol) is a PhD researcher developing a digital Ecological Momentary assessment tool for use with paediatric populations with chronic pain.
What is to come?
The team aims to achieve the following outcomes:
- A co-produced research agenda for co-designing an inclusive technology for paediatric ADHD and exploring systematic factors likely to promote digital inclusion.
- Recommendations for co-design methods to promote the inclusion of digitally excluded/underrepresented families with ADHD.
- Gain early insights from families at risk of digital exclusion about their concerns and barriers related to digital health approaches for paediatric ADHD.
- Develop a network of families living with ADHD and at risk from digital exclusion who would like to partner in the next phase of co-design.