Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada

Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care-giving demands, thereby potentially allowing for longer patient care in the home setting.

State power matters: power, the state and political struggle in the post-war American novel

This article is concerned with resituating the state at the centre of the analytical stage and, concomitantly, with drawing attention to the dangers of losing sight of the state as a locus of power. It seeks to uncover the relationship between two related lines of critical inquiry: Marxist and Foucauldian theories of the state; and the attempts by three postwar American novelist (Ken Kesey, William Burroughs and E.L. Doctorow) to determine the nature and extent of this power and to consider under what conditions political struggle might be possible. It argues that such a move is needed because recent critical analysis has been too preoccupied by corporeal micropolitics and global macropolitics, and that the postwar American novel can help us in this move because it is centrally concerned with the repressive potentiality of the US state. It maintains that the resuscitation of Marxist state theories in early 1970s and a debate between Poulantzas and Foucault is intriguingly foreshadowed and even critiqued by these novels. Consequently, it concludes that these novels constitute an unrecognized pre-history of what would become one of the key intellectual debates of the late twentieth century: an engagement between Marxist and post-structuralist conceptions of the power and resistance.

Genealogies of Partition: History, History-Writing and 'The Troubles' in Ireland

Contemporary political disputes have a long history of expression and contestation through the genre of history-writing in Ireland. The role of history writing and political science writing during the nearly 40 years of the so-called 'Troubles' has been no exception to this. Battles between competing versions of what the conflict 'is about', mediated through academic and popular texts have themselves in turn become constitutive of it. This builds upon centuries of the representation of the complicated politics of this island as 'an issue' in British domestic politics - first 'the Catholic question', then 'the Irish question'. The location of political power outside the island for centuries has created successive battles for the representation of sectional interests in a metropolitan centre. The skills of propaganda, history writing, newspaper writing have consequently been deployed at a remarkable level of skill and intensity. In the recent period one of the consequences of this has been the removal from the debate of the actuality of partition; this builds upon a particular historical representation of partition as an historical inevitability. To seek to restore partition to the debate is not to call for its undoing but to recognise that seeking to circumvent debates about its origins in the key period of democratisation in Irish politics (1880-1920) has been counter-productive. This essay examines the genealogies of partition in Irish and international contexts in the light of these battles for representation, and aims to return a lost dimension to the debate about the so-called 'Troubles'in Ireland. The genealogy of partition is the issue that has been marginalised in academic study and this has affected both policy and politics.