Carers – the sympathy and services stereotype

Abstract

Summary In two recent cases the courts have declined to accord to carers any formal right to a private and family life with the person for whom they care. This paper briefly considers why it is that the courts still view carers as people merely in need of services and sympathy – rather than people entitled to such basic human rights.

Rural dementia carers: formal and informal sources of support

“…There is considerable attention being paid to the support needs of primary carers in recognition not only of the importance of their contribution but the ‘enormous amount and complexity of care that is performed by informal caregivers' (Nordberg 2007 : 38) and the level of challenge the role presents (Balducci et al 2008 ; Eagar et al 2007). Being a primary carer has been associated with a wide range of threats to health and wellbeing (Eagar et al 2007 ) with carers experiencing poorer health (Donelan, Falik and DesRoches 2001 ; Mannion 2008 a , 2008 b ), higher rates of depression (Adams 2007 ; Spector and Tampi 2005 ), increased stress levels (Rahman 1999 ), financial penalties (Chambers, Ryan and Connor 2001 ; Ross et al 2008 ; Schofield et al 1997 ), social isolation and exclusion (Chambers, Ryan and Connor 2001 ; Clements 2004 ; Schneider et al 1999 ; Tilvis, Jolkkonen and Strandberg 2000 ), and increased mortality (Schulz and Beach 1999 ). These associations have led to a focus on primary caring as an essentially affectively negative, stressful and burdensome experience, and a tendency to conceptualise carer need largely in terms of one-dimensional, decontextualised measures of carer ‘burden’ (Hodgson, Higginson and Jefferys 1998 ).…”

Educating children on the autism spectrum: preconditions for inclusion and notions of ‘best autism practice’ in the early years

“…While researching outreach provision for pupils on the autism spectrum, Glashan, Mackay and Grieve (2004) found a positive relationship between parental knowledge and involvement in school and the success of the placement for children. Indeed, the lack of recognition received by parents has been considered to be a barrier to inclusion (Clements, 2004). Spann, Kohler and Soenksen (2003) indicate that, despite research showing the benefits of parental involvement in education, very few parents have any involvement in developing objectives, interventions or methods of evaluation.…”

Working with carers in the next decade: the challenges

“…'to regard carers instrumentally, as resources or co-workers, but with some concern for carers' wellbeing in order to sustain their care-giving capacity.' Clements (2004) goes further and suggests that while it is now no longer acceptable to talk about 'the elderly' or 'the handicapped' it remains acceptable to talk about a 'carer', with the term 'informal' carer often being used, with the implicit assumption 'that caring is considered an elective and noble quality' and carers as 'bearing heroic burdens' (p6). Gray et al (2009:p128) quote a nurse who says: you're a carer for a disabled child, if you're a carer for somebody with a learning disability, if you're a carer for someone with cancer, the instinctive reaction is 'Oh, you must be an angel, you're having to deal with that, poor thing', you know, it's a tragedy.' Clements (2004) suggests that the term 'carer' implies that they are not seen as decision makers, but as people who must defer to experts (Gillies, 2000).…”