Building a research roadmap for caregiver innovation : findings from a multi-stakeholder consultation and evaluation

Egan, Kieren J. and McMillan, Kathryn A. and Lennon, Marilyn and McCann, Lisa and Maguire, Roma (2021) Building a research roadmap for caregiver innovation : findings from a multi-stakeholder consultation and evaluation. International Journal of Environmental Research and Public Health, 18 (23). 12291. ISSN 1660-4601 (

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Across the world, informal (unpaid) caregiving has become the predominant model for community care: in the UK alone, there are an estimated 6.5 million caregivers supporting family members and friends on a regular basis, saving health and social care services approximately £132 billion per year. Despite our collective reliance on this group (particularly during the COVID-19 pandemic), quality of life for caregivers is often poor and there is an urgent need for disruptive innovations. The aim of this study was to explore what a future roadmap for innovation could look like through a multi-stakeholder consultation and evaluation. An online survey was developed and distributed through convenience sampling, targeting both the informal caregiver and professionals/innovators interested in the caregiver demographic. Data were analysed using both quantitative (summary statistics) and qualitative (inductive thematic analysis) methods in order to develop recommendations for future multi-stakeholder collaboration and meaningful innovation. The survey collected 174 responses from 112 informal caregivers and 62 professionals/innovators. Responses across these stakeholder groups identified that there is currently a missed opportunity to harness the value of the voice of the caregiver demographic. Although time and accessibility issues are considerable barriers to engagement with this stakeholder group, respondents were clear that regular contributions, ideally no more than 20 to 30 min a month could provide a realistic route for input, particularly through online approaches supported by community-based events. In conclusion, the landscape of digital health and wellness is becoming ever more sophisticated, where both industrial and academic innovators could establish new routes to identify, reach, inform, signpost, intervene and support vital and vulnerable groups such as the caregiver demographic. Here, the findings from a consultation with caregivers and professionals interested in informal caring are presented to help design the first stages of a roadmap through identifying priorities and actions that could help accelerate future research and policy that will lead to meaningful and innovative solutions.