Care organising technologies and the post-phenomenology of care: an ethnographic case study
28 May 2020
Digital health & innovation Health Services Research Policy & health systems
Gemma Hughes reflects on research into care organising technologies, led by Professor Sara Shaw and recently published in Social Science and Medicine.
How can an app help fill gaps in care?
Tapping out a shopping list by text can be tedious; recording your elderly relative’s prescriptions on your phone can be worrying. Care organising technologies (mostly apps designed for carers to use on their phones or tablets) offer ways of sharing this kind of information safely and easily. According to their developers, these kinds of apps can also create networks of support. When I started researching care organising technologies I was somewhat sceptical about how a simple app might help with the complex, emotive and often onerous work of caring for family members. Claims that apps could mobilise networks of support seemed bold against a backdrop of ever-decreasing resources for social care and ever-increasing burdens for the large numbers of informal (unpaid) carers in the UK.
Now, reflecting back on our research from the middle of the COVID-19 pandemic, the use of technology to organise support and care at a distance has never felt so important. More than ever, we need to understand how technology can help us to care.
Our research into care organising technologies was part of the Wellcome-funded Studies in Co-creating Assisting Living Solutions (SCALS) programme, led by Professor Trisha Greenhalgh. We were concerned not just with if assisted living technologies worked, but in analysing how technologies were used and shaped within their organisational, social, political and policy context. We found, despite a plethora of apps being developed around the world to support carers, there was little by way of academic literature on how carers were using this technology. There was also little evidence that carers were making use of apps to help them in their caring roles despite the pressures on carers and the associated impact on their health and wellbeing.
We set out to investigate how carers in the UK were using 3 different apps, 2 designed specifically for caring and 1 everyday multi-media messaging service used by some people to help them to organise care. We interviewed and observed carers using the app, and spoke to people who were involved in developing apps. Most of the carers that we spoke to were in their 50s or 60s and were using the apps to organise care with their siblings for parents who were in their 70s, 80s, or 90s. We also talked to formal (paid) carers who were using apps to record work and share information.
People used the apps in very different ways, from listing appointments and medications as the designers of the app intended, to unexpected use such as sharing family memories. We drew on theories, including post-phenomenology (concerned with the relationships between people and technologies) and political science (including political and ethical debates about how care is organised) to help us to explain these differences.
Organising the tasks of caring
Some people used the apps to organise tasks and information. Jobs like shopping, organising medications, or arranging medical appointments were listed in a dedicated space on the app, before being allocated to or picked up by family members and marked off when complete. Some people found organising caring in this way very helpful, making it easier to share out errands between siblings. Having a single record of health conditions and medications was also very useful – much easier to show a healthcare professional than resorting to multiple images or lists.
Emotional and social aspects of caring
Other people found organising and allocating caring tasks daunting. Dividing up the work involved in looking after a sick or elderly parent was not always straightforward. The idea of sharing out tasks with what app developers assumed would be helpful siblings contrasted sharply with the situation of one of our participants, Corinne. She had little support from her siblings, and a fractious family history. Corinne never got as far as even using the app. This was because she was worried that introducing it into an already volatile situation would stoke family tensions. The very idea of an app to coordinate care pushed emotional and social aspects of caring to the forefront, highlighting a dearth of harmonious family support. This led Corinne to actively reject the technology.
My scepticism about how an app could possibly make up for a lack of social care or weak family networks might seem well-founded. However, I also met people who had incorporated apps into their families in ways that didn’t just help them to organise the tasks of caring, but which brought them closer together. I heard how families created a shared, digital space to plan care, which allowed them to ‘be there’ for their parent, and for each other, even when they were physically apart. These families extended the use of apps from organising the work of caring to offering support to each other; finding new ways of being together digitally as they chatted online, shared family news and reminisced. The ability to be in remote, simultaneous contact helped them to feel part of a collective experience of caring.
Flexible, multi-purpose technologies can enhance, but not create, caring networks
In a political context that assumes informal support will supplement or substitute for state support, care organising technologies promise to give family carers much needed help. Our study was with a relatively small sample of users. However, we gained important insights into why take-up of these apps remained low despite the apparent potential demand. People used (or adapted) the apps when they readily fitted into their existing family circles. For some people, these circles were made stronger by using the app. For others, an app couldn’t mend fractured relations or make new ones. Importantly, for apps to be useful, they needed to fit with the emotional and social aspects of caring, as well as the aspects of caring that involved coordinating the work that needed to be done.
We concluded that family members could be helped by technology that connected them to each other as they organised the practical tasks of caring, but that apps alone couldn’t compensate for a lack of social support.
It’s obvious, looking back at this research from a time of social distancing and isolation, that many of us are using and adapting technology to find new ways to be together. But, just like our family carers, we might find that whilst our technology plays a very necessary role in enhancing our social connections when we cannot be physically present, it is not sufficient to bring us together.
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