Children, Parents and the Management of Chronic Illness in the Information Age
Abstract
This proposal is for a multidisciplinary and multi-method study which aims to explore how the experience and management of three prevalent chronic childhood conditions - eczema, asthma and diabetes - are being shaped by the contemporary proliferation of innovative health information technologies. It will explore the extent to which parent and children are able to access, assess and act upon e-based health (re) sources. It will also examine whether or not the availability and use of these resources makes a qualitative difference to the experience and management of these conditions. Qualitative interviews will be carried out with both parents and children to ascertain the ways in which the use of these new technologies - which enable access to a myriad of information resources on a global scale - have impacted upon the lived experience and the everyday management of these illnesses. As suck the project links together questions concerned with processes of informatization (e.g. "How do people find solution and information sources to meet their very different health needs"?) with questions which link these processes with those associated with social exclusion (e.g. "Do new technologies and information sources especially those that are "e-based" help to address health care inequalities in contemporary British society?"). Although primarily an empirical and policy orientated study it will also address a strand of contemporary social theorizing, developed in the recent work of Lash (1999 ;2001), which asks: "[W]hat happens in an age in which symbolic power is no longer ideological...an age in which symbolic power no longer takes the forms of the systems of ideas that constitute ideologies. What happens when symbolic power instead is largely informational?"
Summary
Background
A feature of the so-called "information age" is the growth of socio-technical innovations in the provision and accessibility of health information, advice and support. The project will examine how both parents/guardians and children experience and manage three chronic illnesses - eczema, asthma and diabetes - within the context of a hugely expanded and increasingly global array of competing sources of health information, advice and support. The study will be set in the context of debates which suggest that exclusion from the new information and communication technologies (ICTs) will exacerbate existing patterns of inequality: that is ceteris paribus, the "information rich" will tend to experience better health outcomes than will the "information poor".
Research Design
A multi-disciplinary and multi-method study will be carried out to address the following questions: (1) is the experience and management of childhood chronic conditions being shaped by the contemporary proliferation of innovative health information technologies; (2) does the use of these technologies make a qualitative difference to the management of these conditions. To this end the study will comprise:
- an audit and analysis of the e-based (re)sources available for three chronic conditions - eczema, asthma and diabetes
- a screening survey of parents with children who have been diagnosed with one or more of these conditions in three localities which differ in terms of their levels of child poverty and Internet connectivity
- qualitative, semi-structured interviews with a purposive sample of parents and children who are high, medium and non-users of e-health resources in order to qualitatively examine the merits and demerits of using e-based health resources
Policy and Academic Implications
Health policy makes assumptions about the value of e-based information sources to patients and the public, the findings of this study will contribute to a critical analysis of this view. It will therefore contribute to a better understanding of the implications of the governments modernisation programme which is attempting to democratise health knowledge and empower patients.
The findings will contribute to policy and academic debates on the social exclusion and the digital divide, by providing an insight into how information is not only accessed, but also assessed and acted upon.
Sociological concepts such as "information and reflexivity" and the "information age" beg empirical exploration, and so the findings of the study will be used to interrogate these theorisations.
Contacts
Outputs
Research Findings
Findings are available here - pdf
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