JMIR Publications

ABSTRACT

Background:

There are some 6.5 million informal (unpaid) caregivers in the U.K. Each carer plays a critical role in society, supporting the health and wellbeing of those who are ill, disabled or older and who need support on a frequent basis. 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 ability to address the mental and physical impacts of caregiving.

Objective:

We co-developed a national survey with caregivers to help understand current and future technology use of caregivers: including digital technologies used to care for themselves, and the person they look after.

Methods:

Co-development of a wide range of questions by carers and care professionals, and delivery of a national purposefully designed survey administered both online and in paper format to carers nationwide. Using a mixed methods approach we explored quantitative outcomes regarding general use and acceptability and explored free text entries using thematic analysis.

Results:

From 356 respondents caring across a wide range of different conditions, our work 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 (e.g. checking in from distance). While a small section of people raised concerns raised about technology replacing human contact, our survey identified key areas for future work (e.g. communication with health and social care professionals, the potential for technology to help carers with their own health) and a number of stakeholders who could act as suitable points for technology delivery and support.

Conclusions:

Carers are a transient, often hard to reach population and this work has collated a large body of knowledge across a diverse group of individuals. Carers — like the rest of society — are increasingly realising the benefits of using everyday technology to help deliver care. Reliance and future expectations are significant, however many barriers to digital technology use persist, including a lack of ongoing technology support, problematic as many carers are frequently isolated from friends, family and health and social care professionals. Preventative measures to look after carers’ own health appear acceptable, particularly for communicative tools. This collated caregiver knowledge is call for all stakeholders— academics, policy makers and practitioners —to take note of these specific challenges, and to ensure that carer voices are both heard and fully integrated within the emerging digital health agenda. Clinical Trial: NA