Staying safe, staying well:
designing to support selfmanagement of chronic kidney
disease
Ann Blandford, UCL
With Atish Rajkomar
Background
• Reporting on people’s experience
of home haemodialysis
• People with chronic kidney disease typically need
to dialyse to clean their blood for ~4 hours, every
2 days
• Complex and safety-critical procedure
• ~10% of dialysis patients manage their own care
at home (often with help of a family member)
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Why does this matter in a behaviour change
conference?
• If we can’t design technology and systems of care
that works well for people who need to use it, what
chances for people with fewer incentives?
• People have to learn and change their behaviour
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Learning to use the technology
• All reported great support from nurses and
technicians, particularly in the early weeks
• No person is an “island”
• Most reported making mistakes in the early weeks
– it kept alarming and it, I couldn't fathom out why. (P6)
• 12/19 described being scared or panicking
– We had no clue and it was really worrying. We were in a right old
panic. (P14)
• Effort of learning needs to be proportionate to
benefits. Change comes at an emotional cost
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Learned strategies for
staying safe
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Implement reminders
Avoid distractions
Don’t do when tired
Involve other people
Give key to neighbour
Keep mobile phone to hand
Anticipate water or power problems
Change takes time and support
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Making do and mending
• One participant used a hairdryer to dry out inside
of machine
• Another taped up a cracked pipe
• A third ‘tricked’ the machine:
– I’d started dialysis, and the batch […] ran out, but I couldn’t set the
machine to come off. […] I thought, why don’t I just put saline in it, and
trick it into thinking that the batch is still there and made up? So, […] I
managed to sort it out so that I could come off, otherwise I would have lost
a whole circuit of blood. (P16)
• Professionals design systems to be used in
particular ways, but people have other priorities
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Choosing quality of life
• People dialyse alone
• One dialyses on her verandah
• People dialyse when convenient,
even if there is less support available out-of-hours
– During the day if I dialyse, I can phone the home unit, but if I have to phone the
ward, and there’s a problem with this machine, they’re not very good on it. (P13)
• One speeds up the machine at the beginning and
end to speed up the process
• People have different needs: one size does not fit
all
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Summary
• People “dialyse to live”
• There is co-adaptation between their
lives and their dialysis treatment
• They balance safety with quality of life
– The technology and the delivery mechanisms around it
contribute to people’s achievement of this balance.
• All health technologies need to fit in people’s lives
and fit with their values
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These themes are echoed in other studies
• Users of a “mindfulness” app needed to adjust
their lives to fit app use in
– Use affects and is affected by their emotional states
• Users of a patient-controlled EHR accessed it
from mobile devices on the train on the way to
appointments
– People varied in their relationships with clinicians, with
their conditions, and with technology
• Users of resources to help manage alcohol
consumption felt affinity with different tools
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Thank you!
Questions?
www.chi-med.ac.uk
CHI+MED is funded by EPSRC
Programme Grant EP/G059063/1
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