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Striving for independence: experiences and needs of service users with life limiting conditions

By Phil Cotterell


Aim: this paper is a report of a study to explore what service users with a range of<br/>life-limiting conditions identify as their key experiences and needs generally and,<br/>specifically, from health and social care services.<br/><br/>Background: whilst internationally palliative care has a primary focus on service<br/>users who have cancer, there is growing evidence that those with non-cancer lifelimiting<br/>conditions have similar palliative care needs. The literature has mainly been<br/>focused on independence, choice and control at an individual level, with wider<br/>influences on the maintenance or attainment of independence ignored.<br/><br/>Method: a participatory approach was used in 2003–2004, with both the researcher<br/>and a group of service users working together in all stages of the study.<br/>Twenty-five participants in receipt of support from an acute hospital, primary care,<br/>social services and a hospice took part. Face-to-face individual interviews and small<br/>discussion groups were conducted and data were analysed thematically.<br/><br/>Findings: eight different but interconnected themes were identified. Independence/<br/>dependence was an overarching theme, with negotiation between independence and<br/>dependence being evident across all themes. This theme and the influence of health<br/>and social care services on the experience of living with life-limiting conditions are<br/>the focus of this paper.<br/><br/>Conclusion: palliative care and practitioners should focus on maximizing independence<br/>at both the individual and structural levels. How services for those with<br/>life-limiting conditions are provided and relationships with health and social care<br/>staff can directly impact on an individual’s experience of independence, choice and<br/>control

Topics: R1
Year: 2008
DOI identifier: 10.1111/j.1365-2648.2008.04638.x/pdf
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Provided by: e-Prints Soton
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