TECHNOLOGY AND TIME: HOME CARE REGIMES AND TECHNOLOGYDEPENDENT CHILDREN Funded by the ESRCMRC Innova

1
TECHNOLOGY AND TIMEHOME 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

2
Study sample (36 families)
3
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)

4

• 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

5
Medical devices used by the children (n38)

• 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

6
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

7
Settings
HOSPITAL
FRIENDS HOUSES
COMMUNITY
SCHOOL
HOME
RELATIVES HOUSES
RESPITE
8
Settings
HOSPITAL
SCHOOL
HOME
RESPITE
9
Conclusion

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