Children's hospices: where do they fit?

Jackson, Pat; Robinson, Carol

doi:10.1177/0261018303023001497

Cited by 2 publications

(2 citation statements)

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“…The present study found that, while children who went to school were generally assisted by trained carers where required when they were there, there was little such support for families outside school or when the children were off school because of illness. In common with previous work (Olsen & Maslin‐Prothero 2001, Robinson et al . 2001, Jackson & Robinson 2003), the present study identified a lack of appropriate respite care in the home, especially in the evenings to give parents a break, and at night where required to enable parents to get a good night's sleep.…”

Section: Discussionsupporting

confidence: 84%

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

Heaton

Noyes

Sloper

et al. 2005

Health Soc Care Community

160

189

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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.

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Section: Discussionsupporting

confidence: 84%

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

Heaton

Noyes

Sloper

et al. 2005

Health Soc Care Community

160

189

View full text Add to dashboard Cite

show abstract

“…Many of these effects were due, not just to the use of the device, but to the lack of well-coordinated and skilled support from services. While the population of children who have complex medical needs is growing and many of these children are now cared for at home (Glenndinning and others, 2001;Kirk, 1998;While and others, 2004), there are few non-parent carers available who are trained and insured to provide this care (Jackson and Robinson, 2003) and thus parents bear the brunt of care, especially at night.…”

Section: Policy and Practice Implicationsmentioning

confidence: 99%

The Experiences of Sleep Disruption in Families of Technology‐dependent Children Living at Home

et al. 2006

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This paper examines the sleep disruption experienced by 36 families of technology-dependent children living at home in the United Kingdom. The paper begins with an overview of the qualitative study in which parents' experiences of sleep disruption emerged as a major theme. We then describe the nature of and reasons for the sleep disruption, the help families received with care overnight, and the effects of sleep disruption on parents in particular. This is followed by discussion of the implications of the findings for policy and practice as well as future research. Copyright # 2005 John Wiley & Sons, Ltd. IntroductionAdvances in medical technologies have enabled more children with complex health care needs to survive and increasingly to be cared for at home with their families in the United Kingdom and other developed countries. In 2001, it was estimated that there were up to 6000 'technology-dependent' children living in the community in the United Kingdom (Glendinning and others, 2001). This term is used to describe children who use medical technologies that compensate for the partial failure or loss of a vital body function. Examples of such technologies include assisted ventilation, artificial nutrition, intravenous drug therapies, oxygen therapy and renal dialysis. These technologies involve the use of associated medical devices such as ventilators, feeding pumps and dialysis machines, as well as various instruments for monitoring the children's health status.Sleep problems are common among disabled children. Quine (2001) found that settling problems were reported for 41 per cent of children aged four to 12 in special schools compared with 27 per cent of children in mainstream schools; figures for night waking were 45 per cent compared with 13 per cent. Figures for children with severe learning disability are particularly high: for example, Bartlett and others (1985) reported problems in over 80 per cent of children aged up to Wiggs and Stores (1996) showed the average duration of current sleep problem was 7.13 years and others have found that they are not likely to disappear without intervention (Lancioni and others, 1999). CHILDREN & SOCIETY VOLUME20 (2006) pp. 196-208 Published online in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/CHI.881 Copyright Ó 2005 John Wiley & Sons, Ltd. 11 years and 77 per cent of 12 to 16 years. Such problems appear to be persistent: for example,Sleep problems encountered in studies of disabled children are broadly of two types: first, 'behavioural' problems relating to the initiation and maintenance of sleep and, second, 'physical' problems, such as upper airway obstruction and other physiological factors. However, these often co-exist. A third type of sleep problem has been suggested in studies of technology-dependent children: that of sleep disturbance due to the need for parents to administer treatment and/or manage the technology during the night and attend to false alarms on the devices going off and disturbing the child and parents (Kirk, 1998;Kirk a...

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Children's hospices: where do they fit?

Cited by 2 publications

References 0 publications

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

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

The Experiences of Sleep Disruption in Families of Technology‐dependent Children Living at Home

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