Case study 5 - Caring Technologies
How do digital health solutions support caring?
This case study started out following the fortunes of an online and app facility, Helping Hands (all names in the case study are pseudonyms). Helping Hands provides a way of organising a network of friends and family for vulnerable people, by offering an online resource to share information and plan tasks. This digital solution was developed by a small business, in response to ideas generated through a series of focus group organised regionally to identify clinical innovations. Northshire County Council, as part of its ‘digital by default’ strategy, decided to pilot the use of Helping Hands to help vulnerable people stay in their own homes, with the intention of preventing admissions to hospital.
Fieldwork started in 2015, data collection (interviews, observations and documents) and analysis is on-going. To-date, we found the following:
Technology is regarded as a potential solution to address a range of funding and organisational constraints
In Northshire (as elsewhere) local government has faced tough spending settlements in the last 4-5 years, which – combined with high levels of deprivation, a history of poor outcomes and lack of joint working between agencies in the area have “impacted dramatically” on adult social care. As one senior manager told us: “[we are now] trying to change everything, all at once and with not very much resource”. There is a very strong sense that technological innovation – and digital innovation in particular – is the potential solution to these pressures. The vision is of large-scale, system-wide change in health and social care in which “getting digital”, is thought to be key to “doing things differently”. Helping Hands is considered a potential contributor to this ‘transformation’ agenda by those involved in commissioning, developing and funding it.
Uptake of the technology by individual users is slower and more limited than hoped
Although much of the strategic emphasis is on the potential for better outcomes, increased support for clients and carers, and better support for people at home at reduced costs, the evidence for extending Helping Hands currently appears limited. Further, the potential of Helping Hands for changing local provision and support currently appears small-scale.
Limited user engagement
Helping Hands has evolved against a backdrop of a considerable amount of talk (in policy and practice) addressing the needs of local people, developing person-focused and adaptive care, and engaging citizens in designing and developing services. However, to-date, there are few active users. Discussions with 1 group of people using Helping Hands, and 1 group considering use, have touched on the ways in which family dynamics or social relations have been important considerations in setting up and using the technology. It appears that organizational hopes for Helping Hands are, perhaps, greater than individual use.
Adapting and modifying
Since starting to study Helping Hands in 2015, we have found one organization that has started to adapt and modify the resource. Initially targeted at individuals seeking to mobilise and organize care for themselves of their families, a voluntary sector organization has started to use the resource as a referral management tool. This fills a gap for them in their existing IT infrastructure, and makes use of Helping Hands in a novel way.
EXTENDING AND DEVELOPING THE CASE
Since starting our research, a number of other technologies have come to our attention that support caring. We have therefore extended case study 5 to focus on the following questions:
1. How, when and why do caring technologies find a way into people’s lives, and what is their experience of caring when it does?
2. What are the goals and assumptions underlying technologies designed to support caring?
3. In what ways do caring technologies mediate and/or sustain caregiving?
Alongside our work with Helping Hands, we are now focusing on two further additional technologies: a purpose built app for carers (‘Together’) and a generic messaging app (‘MessageU’). During 2018, we will be interviewing users, and developing case studies of organisations that are supporting the development and implementation of the purpose built app. Data collection and analysis are on-going. Early emerging findings suggest that:
- People find and use these technologies in varied ways; some of our interviewees have actively searched for an app to help them with their caring role, others have had the caring app promoted to them. Organisations have used different ways to make the app available, to support implementation, with varying success. However, overall numbers using these apps remains small, compared to the estimated numbers of people involved in caring. Generic apps, are on the other hand, widespread.
- Caring undertaken by a geographically disparate group, for example groups of siblings living in different cities, is made much easier by digital technology. Such groups of carers are more likely to already have good communication networks, which are enhanced by use of the app. Groups will often have multiple modes of communication, switching between different apps and devices.
- Different kinds of carers use the app, sibling groups might be caring for an elderly parent, but paid care is also organised via the app.
- Carers use the app in different ways. Some will use the app to organising tasks and record information. The app becomes a shared digital record, which is an efficient way for carers to keep up to date, and to share information with healthcare professionals. The app is also used to keep in touch, to provide emotional support, reassurance, and to share fun things as well as to manage the serious business of caring.
- The ability to communicate simultaneously with multiple people at a distance is something that is almost taken for granted by our users of the app, and is extremely helpful when managing complicated caring arrangements.
- Expectations about the stability and functionality of apps are high, and users sometimes find the purpose-built app does not perform as well as other apps or devices they use.
- Although use of digital technology is widespread, it is not universal, and limitations of infrastructure (availability of mobile phone network/wi fi) and affordability (devices/smartphones/tablets) affect some users’ ability to benefit from the apps.
- How, and if, people identify themselves as carers, and at what point, affects the kind of tools that they are willing and ready to use.