Abstract
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.
Highlights
Caregivers were highly educated, 60.7% were educated to degree level or equivalent, and 111/112 identified as white (Table 1)
When asked to elaborate on the most important outputs they felt could come from their involvement in caregiver research, the response fits into four key themes: (1) Solutions that are relevant to caregivers and truly reflective of their needs, (2) Long-term, sustainable solutions, (3) For caregivers to feel empowered and supported in their role, (4) Possible impact on policy and practice
The aims of this work were to initiate the development of a roadmap for future caregiver innovation
Summary
In the UK, it is estimated that there are at least 6.5 million informal caregivers, a workforce substantially larger than the National Health Service (NHS) [1] and the collective saving to the health and social care services is estimated to be £132 billion per year. This situation is similar across Europe, and beyond, where 80% of all care is delivered by informal caregivers [2]. As the tide of an ageing global population continues to advance in tandem with a shrinking health and social care workforce [3], there is a public
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