Technology and Time: Home Care Regimes and Technology-Dependent Children

1. 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

2. Study sample (36 families) S P R U

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) S P R U

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 S P R U

5. 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

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 S P R U

7. DAYS OUT HOLIDAYS Settings HOSPITAL FRIEND’S HOUSES COMMUNITY SCHOOL HOME RELATIVE’S HOUSES RESPITE S P R U

8. FRIEND’S HOUSES COMMUNITY DAYS OUT RELATIVE’S HOUSES HOLIDAYS Settings HOSPITAL SCHOOL HOME RESPITE S P R U

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