Technology And Time: Home Care Regimes And Technology-Dependent Children
L218 25 2023
University Of York
Ms J Heaton, Ms J Noyes, Dr P Sloper & Dr R Shah
January 2001 - December 2002
Website
Abstract
The number of technology-dependent children cared for at home in the UK has grown considerably over the past ten years. This trend is set to continue as fewer babies are dying at birth, more children are surviving for longer, and more are being discharged home from hospital as the technologies they rely on are 'rolled out' into the community. While these developments have increasingly enabled technology-dependent children to live at home, emerging evidence suggests that they and their families experience considerable difficulties securing suitable packages of care. In particular, problems with the availability, scheduling and co-ordination of services limit their ability to live ordinary lives. In effect, the children and their families may be excluded from education, work and leisure opportunities because of the care regimens they endure.
Set within the discipline of social policy, this study of a new application of existing health care technologies will investigate the nature and social impact of technologically-based home care regimens for severely impaired children and their families from a temporal perspective. Using qualitative methods, the study will examine the temporal organisation of these care regimes and the associated time consequences for the children and their families. This will involve interviews with up to 80 children, siblings and parents from 36 families about their experiences of technologically-based home care. Up to 48 professionals (associated with a sub-sample of the families who identified forms of good practice) and 12 managers from the study sites, will also be interviewed about the provision and commissioning of this care. The research will inform policy and practice in this area by providing evidence of ways in which health and social care provision can be improved upon for technology-dependent children and their families.
Summary
Background
Children who are dependent on medical technologies such as assisted ventilation and intravenous feeding are increasingly being cared for at home rather than in hospital settings. For the more dependent children, particularly those who are reliant on one or more technologies on a daily basis, this means that complex care regimens have to be managed in the home by their families in conjunction with statutory and voluntary services. Initial research on the experiences of technology-dependent children and their families in the United Kingdom (UK) and abroad has shown that caring for such children at home can be demanding, taking up a lot of family members' time and affecting their ability to live 'normal' lives. Building on this work, this study will examine the nature and impact of these home care regimes on the everyday lives of the children and their families. Of particular concern is the extent to which the temporal demands of home-based medical technologies limit family members' wider involvement in education, work and leisure activities.
Research Design
The study will focus in depth on the experiences of parents, siblings and children from 36 families living in the north of England. All the children in the sample will be dependent on one or more medical technologies on a daily basis; they will also be drawn from different family backgrounds (including single parent families and ethnic minorities) so that any variations in their experiences can be explored. A variety of qualitative methods will be used in order to obtain the perspectives of the disabled children and young people, their siblings, and their parents. These include face-to-face semi-structured interviews, self-completed diaries, and more visually-based methods for involving children who are able to take part in facilitated interviews. In addition, a small number of professionals from statutory and voluntary agencies will be interviewed in order to acquire further information about examples of good practice highlighted by the families who participated in the study.
Policy and Academic Implications
By providing information on the time needs of technology-dependent children and their families, and by highlighting forms of good practice identified by the families, the study will inform the development of UK policy on health and social care, and related policies which concern this group. It will contribute to the IHT Programme by examining the new application of existing health care technologies, focussing particularly on the social management of medical technologies in non-clinical settings, as well as families' perceptions of risk in this context and any social exclusion relating to the care regimens.
Contacts
Outputs
Research Findings
Findings are available here - pdf.
Journals etc.
Heaton J, Noyes J, Sloper P and Shah R. 'The Experiences of Sleep Disruption in Families of Technology-dependent Children Living at Home' Children & Society 20 (2006) pp. 196–208
Heaton J, Noyes J, Sloper P and Shah R. ‘Families experiences of caring for technology-dependent children: a temporal perspective’, Health and Social Care in the Community, accepted March 2005. - view here - pdf
Heaton J, Noyes J, Sloper P and Shah R.‘The experiences of sleep disruption in families of technology-dependent children living at home’, Children & Society, accepted March 2005.
Heaton J, Noyes J, Sloper P and Shah R (2003) Technology-dependent children and family life. Research Works 2003-02, Social Policy Research Unit, University of York: York.
Heaton J, Noyes J, Sloper P and Shah R (2003) Technology and time: home care regimes and technology-dependent children. Final research report (ref: ESRC L218252023), Social Policy Research Unit, University of York: York.
Conference Papers
Janet Heaton, Tricia Sloper, Jane Noyes and Robina Shah (2003) The experiences of sleep disruption in families of technology-dependent children living at home. Oral presentation, BSA Medical Sociology conference, University of York, York 26-28 September 2003.
Jane Noyes, Janet Heaton, Tricia Sloper and Robina Shah (2003) The use of complex medical devices at home: experiences of 'technology-dependent' children and their siblings. ESRC Research at York: Implications for Future Regional Needs 23 June 2003. Priory Street Centre, York
Janet Heaton, Jane Noyes, Tricia Sloper and Robina Shah (2003) 'From hospital to home and beyond: the care of technology-dependent children living in the community'. Seminar presentation to the Human-Computer Interaction group (Psychology/Computer Science Departments), Psychology Department, University of York (10th June 2003).
Janet Heaton, Jane Noyes, Tricia Sloper and Robina Shah (2003) 'Technology and time: home care regimes and technology-dependent children'. Presentation at 'Ageing, Health Technologies and the Built Environment: Developing a New Research and Policy Agenda' a joint workshop of the ESRC Innovative Health Technologies programme, the ESRC Growing Older programme, and the NHS Estates Built Environment research programme. 29 May 2003, Halifax Hall, University of Sheffield.
Noyes J, Heaton J, Sloper P, Shah R (2002) 'Methods for involving technology-dependent children and their families in the study of technology and time'. Poster presentation, Sleep Disorders in Infancy and Childhood annual conference, Rancho Mirage, California, USA (17-19 January 2002).
Noyes J, Heaton J, Sloper P, Shah R (2001) 'Methods for involving technology-dependent children and their families in the study of technology and time'. Oral presentation, Society for Social Studies of Science conference, 'Fashioning the Future: Science, Technology and Visions of Progress', Cambridge, MA, USA (1-4 November 2001).
Noyes J, Heaton J, Sloper P, Shah R (2001) 'Methods for involving technology-dependent children and their families in the study of technology and time'. Poster presentation, BSA Medical Sociology Group conference, University of York (21-23 September).
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