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Families' experiences of caring for technology-dependent children: a temporal perspective.
Health Soc Care Community. 2005 Sep; 13(5):441-50.HS

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'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.

Authors+Show Affiliations

Social Policy Research Unit, University of York, UK. jh35@york.ac.ukNo affiliation info availableNo affiliation info availableNo affiliation info available

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

16048532

Citation

Heaton, Janet, et al. "Families' Experiences of Caring for Technology-dependent Children: a Temporal Perspective." Health & Social Care in the Community, vol. 13, no. 5, 2005, pp. 441-50.
Heaton J, Noyes J, Sloper P, et al. Families' experiences of caring for technology-dependent children: a temporal perspective. Health Soc Care Community. 2005;13(5):441-50.
Heaton, J., Noyes, J., Sloper, P., & Shah, R. (2005). Families' experiences of caring for technology-dependent children: a temporal perspective. Health & Social Care in the Community, 13(5), 441-50.
Heaton J, et al. Families' Experiences of Caring for Technology-dependent Children: a Temporal Perspective. Health Soc Care Community. 2005;13(5):441-50. PubMed PMID: 16048532.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Families' experiences of caring for technology-dependent children: a temporal perspective. AU - Heaton,Janet, AU - Noyes,Jane, AU - Sloper,Patricia, AU - Shah,Robina, PY - 2005/7/29/pubmed PY - 2005/9/10/medline PY - 2005/7/29/entrez SP - 441 EP - 50 JF - Health & social care in the community JO - Health Soc Care Community VL - 13 IS - 5 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. SN - 0966-0410 UR - https://www.unboundmedicine.com/medline/citation/16048532/Families'_experiences_of_caring_for_technology_dependent_children:_a_temporal_perspective_ L2 - https://doi.org/10.1111/j.1365-2524.2005.00571.x DB - PRIME DP - Unbound Medicine ER -