'It felt like surveillance, not support': understanding barriers to enrolling older adults in an energy-linked digital health study during pandemic recovery and the cost-of-living crisis.

内容摘要

While digital health tools are now routinely encouraged across UK health and social care, older adults - particularly those managing multiple long-term conditions - continue to be under-represented in community-based research. Exploring why engagement falls short is essential for improving involvement in technology-supported ageing initiatives. This paper reports findings from a qualitative study exploring barriers to participation in a digital health research project involving older adults. The qualitative work included a workshop with recruitment staff (n = 4), and discussions with key gatekeepers - community organisation leads (n = 4) and carers of older adults (n = 2). Data were analysed using a Framework-guided approach. The qualitative component was embedded within a feasibility study designed to examine a smart-meter mobile application intended to monitor everyday electricity-use patterns among housebound adults aged ≥ 65, with the aim of detecting shifts in daily routines that may signal changes in health. Recruitment took place across the East Midlands between 2021 and 2022, during a period shaped by COVID-19 recovery and the national cost-of-living crisis, but yielded minimal uptake and did not proceed to data collection. Analysis of the qualitative data identified four interrelated influences shaping decisions not to participate: misunderstandings about the purpose and function of the technology; heightened mistrust and privacy concerns in the context of rising energy prices; limited motivation to engage in research alongside a desire to avoid being associated with "frailty"; and the broader environment of pandemic fatigue and increased exposure to technology-related scams. Some older adults expressed concerns that their energy data might be misused - for billing or by criminals - and several avoided telephone contact altogether, describing the phone as no longer a safe place. Involving older adults in digital-health studies that draw on domestic energy data must account for the broader social and economic environment. Financial strain, digital fraud, and pandemic-related mistrust all influenced disengagement. Early community involvement, co-design, and opportunities to discuss or engage directly with the technology may support more confident and informed participation in future research.