Hello. My name is Peter Glick and I'm a final year PhD student at Newcastle University in England
Our research looks at how disabled individuals and families are experiencing a shift to personalised
care from the state. With this paper examining self-directed care budgets. A topic new to CHI
As a first step we will need to explain what a self-directed care budget is
To do this I would like to introduce you to some of my collaborators on this research
One of whom I help care for, which is a motivator for me
The commonality here is that they all have complex, lifelong, intensive, care needs
But obviously they're all completely different people. Some have had their disabilities from birth
Some from accidents in later life. Some have profound learning disabilities. Some of them are way smarter
than I am. So how do you care for such a wide range of people? The answer is we didn't use
We're based in the UK where the state was front and centre. They control, they govern
The state did care to you. It was transactional. There was little in the way of choice or control
Self-directed care budgets reside within a personalised care paradigm. This includes
topics such as shared decision making and social prescribing. But for those most in need there is a
self-directed care budget. The money for funding the care is delivered to you as the individual
needing the care, or your family. You use that money to employ care staff and buy equipment
These budgets are designed to deliver continuity of care, flexibility, choice and control. They're
evidence-based to save money and improve health outcomes. The explicit expectation being that you
will need support to achieve this. After all, not everyone will know how to manage large budgets,
employ staff, run a care team. So the design of these budgets is that the voluntary community
and social enterprise sectors provide the support in ways that you dictate
Here are our research questions. With an unfolding of understanding by first
capturing the experiences and practices of both the care budget recipients and the healthcare
providers. Then look to HCI for how we can help the budget recipients by promoting support through
socio-technical responses. As for approach, our research is participatory and qualitative Using one-to-one semi-structured interviews and focus groups. We engaged with healthcare officers,
disabled individuals and families with disabled children. Earlier engagements showed us that the
budget recipients were time poor, had issues with travelling, were extremely vulnerable to infection,
and could not commit to times due to priorities of care. So how best to engage with them? We also
wanted the focus groups to be responsive, so we could bring back earlier themes in a Participatory
Action Research approach. So how could we achieve this? So for the interviews we ran over zoom at a
time that suited the individuals and families. If that was in the evening or the weekend
then that's what we did. We had difficulty in recruiting health care officers and that has
been previously reported in literature. We found no issues with recruiting our other participants
From these interviews, we performed Thematic Analysis. The interviews showed great tensions, a
real 'us and them' with mistrust on both sides. This was exposed when setting up the focus groups
We wanted them to be a safe design space for all but the budget recipients said "no" to state
healthcare staff. Why? They were frightened that they will be recognised. The fear being that if
they were critical of the healthcare staff, they would have their care budgets removed
We then used that analysis to guide an innovative approach to running focus groups,
iteratively, combining both sync and async. This aligning to Participatory
Action Research and its cycles of plan-act- reflect. We purposed a market research tool,
where the participants interacted in text in bulletin board style
The outputs? 20 hours of recorded interviews and high volumes for the focus group, with
nearly 2,000 interactions, which is a participant looking at a question, moving between questions,
or adding a comment. Nearly 500 comments, nearly 25,000 words. Moving to our Findings let's look at
each one in turn. The first one showed us the importance attached to relational care. It is
not just the quantity of care in terms of hours. It is also about the need to know the carer, to have
choice in who comes into their lives to deliver personal care. To have trust in that carer
Secondly, gaining a self-directed care budget was found to be traumatic by nearly all the recipients we talked to
Here, the health care providers own the scoring on a decision tool, where the individual is
scored on the level of need in 12 health domains. The process is very 'relaxed' in its definitions
so the healthcare staff relied on their discretion throughout. The budget recipients gave examples where
they felt they were denied the budget because staff were using their discretion negatively by
omitting an individual's needs that would score highly. With the healthcare staff stating they did
this, as they felt the individuals were not capable of running the budget. Thirdly, when the budget is
gained, we found this unbalanced power dynamic continued. The budget recipients found themselves
walking a tight group: on one side is their legal right to have the choice and control over their
care, and when they were denied this they fought and battled to gain it; and on the other, they knew
if they angered the healthcare staff they could have their funding removed. With the healthcare
providers recognizing this power dynamic, believing it was their remit to be risk-averse
Finally, those with the budget reached out to gain support for being an employer of carers
They had to do this as they received little or no support from their healthcare providers
and the voluntary community and social enterprise sector just wasn't available to them, even though
this was a policy requirement. Generally being isolated due to their care needs, they used
the internet to search for support but found little there. Plenty of advice but little support
In addition, we found them wary of going to social media for this support as they had little
trust in what was placed there. With the impact of misleading information being very high on their lives
We offer three discussion points. Let's look at the first. The budget recipients explained that
they had to create multiple documents to enable their responsibilities. The documents range from a
staff contract, health and safety policies, to care diaries and so on. There could be 30 or more of
these in one household. So a digital commons that holds peer-produced content is one design approach
An impact is that it exposes their invisible work to healthcare staff
That can be good as it aids communication but there is the risk of healthcare staff then standardising
and enforcing all these documents. We won't have time for the second which covers mitigating the
impacts of human negative discretion when automating healthcare. And we've covered
aspects of the third point when we examined the focus group.
So what do I want to leave you with?
A digital commons of peer-to-peer documents that provides capability to allow autonomy;
mitigating risk arising from the negative aspects of human discretion
when looking at automation; and a novel method of asynchronous and synchronous focus groups
Yes our research took place in the UK with free healthcare, but personalised care is being rolled
out across the world and we see transferability with our contributions
Thank you for watching