Understanding current needs and future expectations of informal caregivers for technology to support health and well-being : national survey study

Egan, Kieren J. and Clark, Patricia and Deen, Zahid and Paputa Dutu, Carmen and Wilson, Graham and McCann, Lisa and Lennon, Marilyn and Maguire, Roma (2022) Understanding current needs and future expectations of informal caregivers for technology to support health and well-being : national survey study. JMIR Aging, 5 (1). e15413. ISSN 2561-7605 (https://doi.org/10.2196/15413)

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Background: There are approximately 6.5 million informal (unpaid) caregivers in the United Kingdom. Each caregiver plays a critical role in the society, supporting the health and well-being of those who are ill, disabled, or older and who need frequent support. Digital technologies are becoming a ubiquitous part of everyday life for many, but little is known about the real-world impact of technology for those in a caring role, including the abilities of technologies to address the mental and physical impacts of caregiving. Objective: This study aims to understand the current and future technology use of caregivers, including digital technologies used to care for themselves and the person they look after. Methods: We codeveloped a wide range of questions with caregivers and care professionals and delivered this survey both on the web and in paper format (eg, using social networks such as Twitter alongside in-person events). Questions were focused on providing care and looking after caregiver health and well-being. Analyses focused on both quantitative outcomes (frequency counts and Likert questions) and explored free text entries (thematic analysis). Results: From 356 respondents, we identified that caregivers were receptive to, and largely positive about current and future use of technology both for their own care and their caring role (eg, checking in from distance). There were notable concerns, including the risk that technology could replace human contact. We identified several key areas for future work, including communication with health and social care professionals, and the potential for technology to help caregivers with their own health. We also identified several stakeholders (eg, care workers, pharmacy staff, and general practitioners) who could act as suitable points for technology signposting and support. Conclusions: Caregivers are a transient, often difficult to reach population, and this work has collated a large body of knowledge across a diverse group of individuals. Many caregivers, like the rest of society, are realizing the benefits of using everyday technology to help deliver care. It is clear that there is already a high level of dependency on technologies, where future expectations will grow. However, many barriers to digital technology use remain, including a lack of ongoing technology support. Preventive measures linked to technology that can help look after a caregiver's own health appear acceptable, particularly for communicative tools. This collated caregiver knowledge is a call for all stakeholders-academics, policy makers, and practitioners-to take note of these specific challenges, and to ensure that caregiver voices are both heard and fully integrated within the emerging digital health agenda.


Egan, Kieren J. ORCID logoORCID: https://orcid.org/0000-0002-1639-4281, Clark, Patricia, Deen, Zahid, Paputa Dutu, Carmen, Wilson, Graham ORCID logoORCID: https://orcid.org/0000-0003-2664-1634, McCann, Lisa, Lennon, Marilyn ORCID logoORCID: https://orcid.org/0000-0003-3271-2400 and Maguire, Roma ORCID logoORCID: https://orcid.org/0000-0001-7935-3447;