ABSTRACT
The aim of this chapter is to demonstrate the relationship between undertaking an informal caring role and social exclusion. There is a substantial body of literature available on the impact of caring on informal caregivers; however this literature focuses largely on identifying and measuring the impact of the caring role. The negative impact of caring is clear. A recent survey of over 4,000 carers in Australia reported that they had the lowest collective wellbeing of any group surveyed (Cummins et al. 2007). Differences in wellbeing between carers as a group, and non-carers, were reported in the Victorian Carers Program, a population-based study (Schofield et al. 1998). Carers reported less life satisfaction, less positive affect, more negative affect and greater overload compared with non-carers, regardless of age or marital status. More than onequarter of the 945 carers in the Victorian Carers Program self-rated their health as fair or poor (Schofield et al. 1998) in comparison with 16 per cent of 25,900 Australians in the general population who rated their health as fair or poor in a National Health Survey (Australian Institute of Health and Welfare, 2006). In this chapter we argue that the type of exclusion experienced as a result of caregiving is not a static phenomenon, and that exclusion can be primarily social, financial, or systemic. A carer or caregiver is someone who is unpaid and provides regular and
ongoing assistance and support (physical or emotional) for a person with a physical and/or intellectual disability, mental illness or is frail aged. The person for whom they care is referred to as a care recipient. The number of people in a caring role is growing in Australia due to the ageing population and to people with disabilities living longer. The data included in this chapter comes from several studies conducted
with carers in the Barwon-South West region of Victoria for various projects. In-depth interviews were conducted with: 41 parents of a child aged up to 13 years with a disability (Jones et al. 2003); 77 carers in the areas of aged care, disability and mental illness (Carvill 2008); 42 parents and family carers of adolescents with a disability (Fennessy et al. 2008); and telephone interviews conducted with 142 community-dwelling women aged 70 or over (Ulvestad 2006). The words of the carers interviewed for these projects are used to illustrate points in this chapter.
