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TECHNOLOGY AND TIME: HOME CARE REGIMES AND TECHNOLOGY-DEPENDENT CHILDREN Funded by the ESRC/MRC Innovative Health Technologies Programme

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TECHNOLOGY AND TIME: HOME CARE REGIMES AND TECHNOLOGY-DEPENDENT CHILDREN Funded by the ESRC/MRC Innovative Health Technologies Programme. Janet Heaton SPRU, University of York Jane Noyes Department of Health Sciences, University of York Tricia Sloper SPRU, University of York

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TECHNOLOGY AND TIME:HOME CARE REGIMES ANDTECHNOLOGY-DEPENDENT CHILDRENFunded by the ESRC/MRC Innovative Health Technologies Programme

Janet Heaton SPRU, University of York

Jane Noyes Department of Health Sciences, University of York

Tricia Sloper SPRU, University of York

Robina Shah Independent Researcher, Manchester

who are technology dependent children
Who are technology-dependent children?

‘…use medical devices that compensate for the partial or full loss of a vital body function, and who require a technically skilled carer to prevent death or further disability’

(US Congress OTA, 1987)

S P R U

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Examples =
  • artificial nutrition
  • dialysis
  • assisted ventilation
  • suction machines

Estimated 6000 TD children living in the community in the UK in 2001 (Glendinning et al., 2001

S P R U

medical devices used by the children n 38
Medical devices used by the children (n=38)

Device Used by N children

Feeding pump/bolus 21

Suction machine 9

Nebuliser 8

Dialysis machine 8

Ventilator 6

Tracheostomy 5

IVs 4

Volumatic spacer 4

Oxygen machine 4

NG tube 3

BP machine 3

SATS monitor 2

Humidification unit 2

Inhaler 2

Others (including: colostomy; cough machine;

PEP mask; portacath) 1

S P R U

technical care activities carried out by parents
‘Technical care’ activities carried out by parents
  • Assisting the child when s/he is using a device
  • Monitoring the child directly and/or via devices
  • Managing the equipment
  • Maintaining interface between the device and the body
  • Access technical support from service providers
  • Providing technical support to others

S P R U

settings

DAYS

OUT

HOLIDAYS

Settings

HOSPITAL

FRIEND’S

HOUSES

COMMUNITY

SCHOOL

HOME

RELATIVE’S

HOUSES

RESPITE

S P R U

settings8

FRIEND’S

HOUSES

COMMUNITY

DAYS

OUT

RELATIVE’S

HOUSES

HOLIDAYS

Settings

HOSPITAL

SCHOOL

HOME

RESPITE

S P R U

conclusion
Conclusion
  • Lack of technically-trained formal carer provision
  • Devolution of care from hospital to home and beyond?
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