Families' experiences of caring for technology-dependent children: a temporal perspective

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Families' experiences of caring for technology-dependent children : a temporal perspective. / Heaton, J; Noyes, Jane; Sloper, P; Shah, R.

In: Health and Social Care in the Community, Vol. 13, No. 5, 25.07.2005, p. 441-450.

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@article{ff0e997c6ab246eda5e5adef4d2e5b7a,
title = "Families\{textquoteleft} experiences of caring for technology-dependent children: a temporal perspective",
abstract = "In the present study, families’ experiences of caring for a technology-dependent child were examined from a temporal perspective. This involved exploring the multiple ‘technological’, ‘social’ and ‘natural’ rhythms and routines around which the families’ lives were variously structured. A purposive sample of 36 families with technology-dependent children who used one or more medical devices on a daily basis was recruited. Devices included feeding pumps, suction machines, dialysis machines and ventilators. Using mainly qualitative methods, children, parents and siblings were interviewed to establish what the care routines involved and how these impacted on family members. The authors found that the rhythms and routines of care varied across the sample, depending on the type and number of devices used, the individual child\{textquoteleft}s needs, and who provided technical care during the day and/or at night at home and in other settings. While the children\{textquoteleft}s health and quality of life benefited from the technology, the time demands of the care routines and lack of compatibility with other social and institutional timeframes had some negative implications for the children and their families, limiting their participation in school, employment and social life in general. The need to use and oversee the use of some medical technologies at night also meant that many parents suffered regular disruption to their sleep. In conclusion, the authors argue that the care of technology-dependent children at home places considerable time demands on families. Families have little or no access to suitably trained carers who can provide technical care required in the home or away from the home to give parents and the whole family a break from caring where required. More trained carers and short-term care provision, better coordination of services and improvements in the design of devices would all help to reduce the negative effects of the care routines on families.",
keywords = "Complex care, Disability, Home care, Medical devices, Technology-dependent children, Time",
author = "J Heaton and Jane Noyes and P Sloper and R Shah",
note = "Copyright \{circledC} 1999-2017 John Wiley & Sons, Inc.",
year = "2005",
month = "7",
day = "25",
doi = "10.1111/j.1365-2524.2005.00571.x",
language = "English",
volume = "13",
pages = "441--450",
journal = "Health and Social Care in the Community",
issn = "1365-2524",
number = "5",

}

RIS

TY - JOUR

T1 - Families' experiences of caring for technology-dependent children

T2 - Health and Social Care in the Community

AU - Heaton,J

AU - Noyes,Jane

AU - Sloper,P

AU - Shah,R

N1 - Copyright © 1999-2017 John Wiley & Sons, Inc.

PY - 2005/7/25

Y1 - 2005/7/25

N2 - In the present study, families’ experiences of caring for a technology-dependent child were examined from a temporal perspective. This involved exploring the multiple ‘technological’, ‘social’ and ‘natural’ rhythms and routines around which the families’ lives were variously structured. A purposive sample of 36 families with technology-dependent children who used one or more medical devices on a daily basis was recruited. Devices included feeding pumps, suction machines, dialysis machines and ventilators. Using mainly qualitative methods, children, parents and siblings were interviewed to establish what the care routines involved and how these impacted on family members. The authors found that the rhythms and routines of care varied across the sample, depending on the type and number of devices used, the individual child's needs, and who provided technical care during the day and/or at night at home and in other settings. While the children's health and quality of life benefited from the technology, the time demands of the care routines and lack of compatibility with other social and institutional timeframes had some negative implications for the children and their families, limiting their participation in school, employment and social life in general. The need to use and oversee the use of some medical technologies at night also meant that many parents suffered regular disruption to their sleep. In conclusion, the authors argue that the care of technology-dependent children at home places considerable time demands on families. Families have little or no access to suitably trained carers who can provide technical care required in the home or away from the home to give parents and the whole family a break from caring where required. More trained carers and short-term care provision, better coordination of services and improvements in the design of devices would all help to reduce the negative effects of the care routines on families.

AB - In the present study, families’ experiences of caring for a technology-dependent child were examined from a temporal perspective. This involved exploring the multiple ‘technological’, ‘social’ and ‘natural’ rhythms and routines around which the families’ lives were variously structured. A purposive sample of 36 families with technology-dependent children who used one or more medical devices on a daily basis was recruited. Devices included feeding pumps, suction machines, dialysis machines and ventilators. Using mainly qualitative methods, children, parents and siblings were interviewed to establish what the care routines involved and how these impacted on family members. The authors found that the rhythms and routines of care varied across the sample, depending on the type and number of devices used, the individual child's needs, and who provided technical care during the day and/or at night at home and in other settings. While the children's health and quality of life benefited from the technology, the time demands of the care routines and lack of compatibility with other social and institutional timeframes had some negative implications for the children and their families, limiting their participation in school, employment and social life in general. The need to use and oversee the use of some medical technologies at night also meant that many parents suffered regular disruption to their sleep. In conclusion, the authors argue that the care of technology-dependent children at home places considerable time demands on families. Families have little or no access to suitably trained carers who can provide technical care required in the home or away from the home to give parents and the whole family a break from caring where required. More trained carers and short-term care provision, better coordination of services and improvements in the design of devices would all help to reduce the negative effects of the care routines on families.

KW - Complex care

KW - Disability

KW - Home care

KW - Medical devices

KW - Technology-dependent children

KW - Time

U2 - 10.1111/j.1365-2524.2005.00571.x

DO - 10.1111/j.1365-2524.2005.00571.x

M3 - Article

VL - 13

SP - 441

EP - 450

JO - Health and Social Care in the Community

JF - Health and Social Care in the Community

SN - 1365-2524

IS - 5

ER -

ID: 2253584