Making family care work: Dependence, privacy and remote home monitoring telecare systems

Making Family Care Work:

Dependence, Privacy and Remote Home Monitoring

Telecare Systems

John Vines1, Stephen Lindsay2, Gary W. Pritchard1, Mabel Lie1, David Greathead1,

Patrick Olivier1 and Katie Brittain1

1 Culture Lab, Newcastle University2 Fit Lab, Swansea University

ageing in place

Living within one’s own community—with some level of independence—rather than entering residential care for as long

as possible in later life.

(Fange and Ivanoff)

technology & ageing in place

Trip and fall monitoring (Nehmer et al.)

Medication reminders (McGee-Lennon et al.)

Remote monitoring for:care teams (Richie et al.)

volunteer carers (Consolvo et al.)

concerned relatives (Rowan et al.)

our ‘local’ context

Move away from ‘formal’ care provision to ‘informal’ care provided by volunteers

(mostly families and friends)

Less technology and equipment provided by the state – more emphasis on private

purchases and consumer systems – likely to be purchased by relatives

Safe Home Living system [SHeL]

‘SHel’Safe Home Living

‘Shel’ kit

Wireless PIR sensors; GPRS hub

‘Less Than Emergency’

Shel infrastructure

Carerecipient

Caregiver

Secure server

Action

study designInstalled in homes of 21 participants (17

completed trial) aged 66 to 91 years.

11 family caregivers participated as ‘monitorers’

Interviews before installation, during installation and at end of trial

Focus on the experience of the system from the older adults perspective with a view to how it

impacts upon existing care relationships

Thematic analysis [1] of transcript data

findings

motivations for using SHel

balancing privacy, control and risk

vulnerability and independence

presence and absence

findings:motivations for using SHeL

“With her being on her own you just don’t know what could happen. I worry about the fact that if you haven’t rang her that day or none of us have rang her that day.”

(Betty’s daughter) “She might stop phoning me asking what I’ve been up to each evening”

(Robert, pre-int.)

findings:privacy, control & risk

“I occasionally do stay overnight [at a friend’s] [...] it just crops up and I’ll say right I’m off and I certainly wouldn’t ring [daughter] to let her know that I was going ... it’s none of her business.”

(Robert, install-int.) “was very, very helpful to think that my daughter who’s a good hour’s drive away could tell which room I was in and if I was in a room too long – she would ring up anyway to say‘what are you doing in there so long’ if it was the bathroom say”

(Sarah, exit-int.)

“I think I possibly do feel a bit safer when it’s in because you know if anything happened in that month [it was installed], I would be found.”

(Betty, exit-int.)

“it [was] just one step down from making you dependent on somebody […] it takes away your perception of independence”

(Reg, exit-int.)

findings:vulnerability & independence

“I think it’s quite reassuring to know that it’s working [...] I think it should be visible at some point [...] when I walked in the kitchen and walked past the fridge I could see out of the corner of my eye this thing [the main hub] go like that [flashing] I wasn’t aware of that in any of the other rooms but when I went in the kitchen it reassured me that it was still working”

(Janet, exit-int.)

“Tell you the truth I forget it’s there.”

(Carole, exit- int.)

findings:presence & absence

design recommendations

#1 Present activity data to those being monitored



#2 Control over how activity is presented to others




#3 Feedback on the frequency of being monitored



#3 Feedback on the frequency of being monitored

#4 Reassuring caregivers through explicit interaction


Thank you!

Any questions?

This research was performed as part of TSB funded project ‘SHel’ and partly supported by the TSB ALIP 3 and 4 project ‘SALT’

[email protected]

Health & Medicine

Making family care work: Dependence, privacy and remote home monitoring telecare systems