Chronic illness and informal carers: ‘Non-persons’ in the health system, neither carers, workers or citizens

Abstract

I give an account of disquieting experiences in relation to my treatment and those with chronic illness in the acute system during my 5 years’ experience as an informal caregiver. People with chronic illness (and their caregivers), particularly stroke survivors face a biased, frustrating and even dangerous acute care hospital system where they are second class. Well-being and stability from rehabilitation and self-management can be undermined. Dow and McDonald’s (2007) concept: ‘disenfranchised care contractors’ within early discharge and ‘hospital in the home’ programs is generalised more broadly. The studies that initiated Hospital at Home programs are scrutinised. The Australian medical system relies on informal carers in a fundamental way but still does not identify or acknowledge them despite the presence of laws such as the Carers Recognition Act (2005). A new concept argues informal caregivers ‘do social bonds’ at a deep level, weaving the social fabric into a denser structure. But as part of the private world, the formal system treats them routinely with disrespect and they can be manipulated to obtain their participation in early discharge programs and long term care.

Keywords:

• sociology
• stroke
• autoethnography
• informal carers
• self-management
• chronic illness