A qualitative investigation of the palliative care needs of terminally ill people who live alone
Introduction
Community and home-based palliative care services are facing increasing challenges in service provision due to an ageing population, an increase in the number of people living alone who require care, a decrease in the availability of family caregivers and a preference to be cared for and die at home (Hinton, 1994, National Centre for Social and Economic Modelling, 2004; Skett, Clark, Skinner, Smith, & Oldham, 2004).
A recent Australian scoping study explored the issues of palliative care patients living alone without a primary caregiver, to provide evidence-based information to assist with service planning for this growing population. Findings from the provider perspective phase of the scoping study were reported in Aoun et al. (2007). Previous to this study, no studies have been undertaken to examine care issues related to palliative care clients living alone. These studies had mainly examined place of death as an outcome, with status of caregiver arrangements only considered as a peripheral finding (Brazil, Bedard, & Willison, 2002; Cantwell et al., 2000; De Conno et al., 1996; Grande, Addington-Hall, & Todd, 1998; Grundy, Mayer, Young, & Sloggett, 2004; Gyllenhammar et al., 2003; Higginson, Astin, & Dolan, 1998; Hinton, 1994, Jordhoy et al., 2000; Karlsen & Addington-Hall, 1998; Van den Eynden et al., 2000). Individuals living alone were mentioned as a sub-group of the total study sample and the absence of a caregiver was cited as one of the factors associated with decreased likelihood of a home death.
Analysis of services records from the scoping study (Aoun et al., 2007) confirmed previous reports that people living alone with a terminal illness had more hospital admissions and were less likely to die at home than those who had a caregiver. Furthermore, the scoping study reported that clients without a caregiver needed considerably more assistance with hygiene, more home help, and management of their care required more liaisons with other health professionals, compared to those with a caregiver. Also, service providers reported spending additional time per visit providing support tasks to those with no caregivers mainly in daily living, symptom control, housekeeping and emotional support.
Although the feedback from the service providers is valuable in planning support structures and improving the services, it is essential to identify the needs of clients directly. This paper reports on the perspectives of clients living alone, receiving palliative support from a community-based service in Western Australia.
Section snippets
Methodology
The methodology consisted of face-to-face interviews with clients from both metropolitan and rural settings, to capture their personal experiences of managing at home alone. Clients were recruited from Silver Chain Hospice Care Service (SCHCS) and Silver Chain Nursing Association in Western Australia. Ethics approval was granted by Edith Cowan University Ethics Committee and SCHCS Ethics Committee.
A semi-structured interview protocol was used to assess physical, social and emotional needs.
Discussion and conclusion
It is important to recognise that all participants had been living alone for varying, and sometimes considerable periods of time prior to the acquisition of an advanced cancer diagnosis. Therefore, all of the social networks, and most of the support participants accessed had been established in the context of a prolonged period of solo independent living. The notion of maintaining independence was extremely important to participants because it determined the participants’ judgements about if,
Acknowledgements
The authors gratefully acknowledge the Australian Government Department of Health and Ageing-Palliative Care Section for their financial support. Many thanks to Ms Kim Skett for facilitating the interviews with Silver Chain Hospice Care clients and to Dr. David Wall for undertaking the interviews.
References (17)
- et al.
Effect of home care on the place of death of advanced cancer patients
European Journal of Cancer
(1996) - et al.
Place of death and access to home care services: are certain patient groups at a disadvantage?
Social Science Medicine
(1998) - et al.
A palliative care intervention and death at home: A cluster randomised trial
The Lancet
(2000) - Abernethy, A. P., Shelby-James, T. M., Fazekas, B. S., Woods, D., & Currow, D. C. (2005). Performance status assessment...
- et al.
Terminally-ill people living alone without a caregiver: An Australian national scoping study of palliative care needs
Palliative Medicine
(2007) - et al.
Factors associated with home death for individuals who receive home support services: a retrospective cohort study
BMC Palliative Care
(2002) - et al.
Predictors of home death in palliative care cancer patients
Journal of Palliative Care
(2000) - et al.
Living arrangements and place of death of older people with cancer in England and Wales: A record linkage study
British Journal of Cancer
(2004)
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