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

Abstract

Aim: this paper is a report of a study to explore what service users with a range of
life-limiting conditions identify as their key experiences and needs generally and,
specifically, from health and social care services.

Background: whilst internationally palliative care has a primary focus on service
users who have cancer, there is growing evidence that those with non-cancer lifelimiting
conditions have similar palliative care needs. The literature has mainly been
focused on independence, choice and control at an individual level, with wider
influences on the maintenance or attainment of independence ignored.

Method: a participatory approach was used in 2003–2004, with both the researcher
and a group of service users working together in all stages of the study.
Twenty-five participants in receipt of support from an acute hospital, primary care,
social services and a hospice took part. Face-to-face individual interviews and small
discussion groups were conducted and data were analysed thematically.

Findings: eight different but interconnected themes were identified. Independence/
dependence was an overarching theme, with negotiation between independence and
dependence being evident across all themes. This theme and the influence of health
and social care services on the experience of living with life-limiting conditions are
the focus of this paper.

Conclusion: palliative care and practitioners should focus on maximizing independence
at both the individual and structural levels. How services for those with
life-limiting conditions are provided and relationships with health and social care
staff can directly impact on an individual’s experience of independence, choice and
control.

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