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

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 life-limiting 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.