Academic journal article Health Sociology Review

Chronic Illness and Informal Carers: 'Non-Persons' in the Health System, Neither Carers, Workers or Citizens

Academic journal article Health Sociology Review

Chronic Illness and Informal Carers: 'Non-Persons' in the Health System, Neither Carers, Workers or Citizens

Article excerpt

As far back as the 1940s, far sighted planners wanted to establish policies which would enable communities to care for those with chronic illness in a realistic and unifi ed manner but this confl icted with the customary practice of medicine (Buhler-Wilkerson, 2007, p. 619). As a result community policies are remnants which continue to fi t around the formal sector.1 For example, in Australia a number of state based district nursing services are under-funded charities. Thanks partly to medical science, the period of living with chronic illness and needing assistance is set to double (Hugo, 2007, pp. 171-172, 177). 'Hospital in the Home' schemes have potential because they are one of the few interfaces which exist between the formal and the community spheres.

To examine the relationship between the formal world of hospitals and the private world of those with chronic illness and caregivers, this article will focus particularly on the 'disenfranchised' aspect of Dow and McDonald's (2007, pp. 197-201) concept of 'disenfranchised care contractors'. Informal carers are in a central position in terms of work and responsibility including quasi nursing duties but they are accorded little or no basic decision-making power or respect. Their work is largely unrecognised and openended, and they have little say in care planning decisions that impact on their lives. Their skilled tacit knowledge about the client's care needs is ignored sometimes with serious consequences.

Many carers want to be involved in caring. While it has stressful aspects it is also satisfying (Zapart, Kenny, Hall, Servis, & Wiley, 2007) and is a signifi cant expression of the social bond between people. It will be argued that an elitist and rigid relationship prevails between the public sphere and the private caring sphere. A rights' perspective will be used, rather than the medical model's needs-based approach. This article points toward the reconstitution of the relationship between this aspect of the private and the public. Genuine rights would bring these relations openly into the public political sphere including the medical system, and set survivable limits particularly for long term care.

An out of date view which prevails in medical training, valorises short term, acute episodes of illness (Brooks, 2003) and dramatic interventions in hospital rather than the small incremental improvements possible in relation to clients with chronic illness. The latter are illegitimate, called 'bedblockers' in the Nordic countries and elsewhere (Johansson, 1991, p. 236), taking beds away from the preferred ill. Yet the extent of chronic illness as the leading cause of death started to be noticed as far back as the 1920s (Buhler-Wilkerson, 2007, p. 616) and was certainly dominant by the late twentieth century in modernist societies. The studies show clearly that those with chronic illness have to take regular trips to hospital to deal with small emergencies (Wiles, 2003). This is particularly the case with (CHF) congestive heart failure (Boyd et al., 2004). I argue there is a lack of fi t between acute hospitals and chronic illness.

This article will follow Fine (2007, pp. 2, 51) and others and largely focus on care as a form of meaningful body-work particularly with the growing practice of mixing formal and informal care into hybrid forms of work (Ungerson, 2005). The fi rst part will develop an autoethnography. The latter will represent particular moments in the health system during my 5 year journey as an informal carer with my partner, Bill who was someone with dilated cardiomyopathy and a stroke survivor. The latter part of the article will scrutinise the medical and epidemiological research which led to the setting up of early discharge and 'hospital and rehabilitation in the home' schemes in societies such as Britain, the Nordic countries and Australia.


In the stroke ward, Bill (with aphasia) had a great deal of diffi culty fi nding the correct words and tended to communicate with me about things that were bothering him. …

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