TAC Outcome Report: Ageing with a traumatic brain injury consumer resources

Traumatic brain injury (TBI) is a major cause of long-term disability and significant health care burden (Hyder et al., 2007). In middle and high-income countries, there has been an increase in TBI incidence in older adults, with falls and motor vehicle crashes contributing (Beck et al., 2016; Thompson et al., 2006). There has also been an increase in survival and longevity (but not necessarily quality of survival) following TBI (Beck et al., 2016). As such, it is likely that there are more older adults living with TBI than ever before.
People with cognitive impairment, including those with TBI, are often at a disadvantage with respect to voicing their health needs, navigating health care systems, and advocating for themselves with clinicians and funders (Federman et al., 2009; Hahn et al., 2020; Hahn et al., 2017; Han et al., 2015). This can have significant implications for long-term health outcomes. Previous research funded by TAC and icare demonstrated that there is a lack, both locally and internationally, of consumer-friendly resources providing consistent, evidence-based health information for people ageing with TBI (Cameron & Kurrle, 2021; Ekegren, Lalor, et al., 2020; Ekegren, Schwarzman, et al., 2020).
To improve health and wellbeing outcomes, this research aimed to co-design a tailored educational resource with, and for, older people with TBI and their families and carers especially designed to improve knowledge and understanding of common health issues specific to people ageing with a TBI as well as promote the self-management of these issues.
A five-stage design thinking process was used as a methodological framework for the research (Auernhammer & Roth, 2021).
• Stage 1 (‘empathise’) included consultations with stakeholder organisations in Victoria and New South Wales (NSW), a survey of older adults (aged 55+ years) with TBI, a consumer engagement event and extraction of findings from two prior evidence reviews conducted by the researchers on ageing with TBI (Cameron & Kurrle, 2021; Ekegren, Lalor, et al., 2020; Ekegren, Schwarzman, et al., 2020).
• Stages 2 and 3 (‘define’ and ‘ideate’) were undertaken with a co-design team from Victoria and NSW including two older adults with lived experience of TBI, one family member of an older adult with TBI and two multidisciplinary clinicians who care for older adults with TBI. From December 2023 to April 2024, the co-design team participated in four, two-hour, online co-design workshops, facilitated and supported by the investigators, to ‘define’ the health priorities and information needs for older adults with TBI and their families (stage 2) and ‘ideate’ the content, structure and design of the resource (stage 3).
• Stage 4 (‘prototype’) aimed to develop ideas into tangible resources. The investigators synthesised the evidence collected from stages one to three with peer-reviewed and grey literature, and subsequently developed content for the resource. A graphic designer, video production team and web-designer were engaged to design the resource in collaboration with the investigators, with several iterations produced.
• Stage 5 (‘test’) aimed to evaluate the usability of the resource via one-on-one user-testing with the co-design team, and verbal and written feedback from the Steering Committee. Results of testing and feedback were incorporated into a brief for a graphic designer to refine the final product (Appendices 1 and 2).
Based on our previous research, it is evident that there is a universal need for evidence-based health information for people ageing with TBI and that this is currently lacking. This is detrimental to the TBI population, who may already have a reduced health literacy compared to the wider population, due to cognitive impairment and socio-economic disadvantage. To our knowledge, this is the first co-designed educational resource developed with people ageing with a TBI for people ageing with a TBI. The co-design methodology provided a systematic framework to gain deep insights on the health and wellbeing challenges of people with a TBI and their family and carers.
Tools for Ageing Well with Traumatic Brain Injury was completed in August 2024, will be uploaded to the Connectivity website in September 2024 (https://www.connectivity.org.au/tools-for-ageing-well/) and will be officially launched at Brain Injury Australia’s 9th National Brain Injury Conference on 26 September 2024. As the first Australian resource of its kind, Tools for Ageing Well with Traumatic Brain Injury will assist older adults with TBI and their families, who are often at a disadvantage with respect to voicing their health needs, to proactively plan for ageing well with TBI.