Retaining a positive sense of self in individuals with a life-limiting illness: a revised conceptual framework

This article argues that a life-limiting illness has a profound effect on an individual’s sense of self. Drawing on theory and research on the self and on intervention work with individuals with a life-limiting illness, it proposes that a positive sense of self can be retained through a clear sense of values, mutual support and storytelling which facilitates manageable, self-initiated, meaningful change. The patient-led PATCHATT (Patients Changing Things Together) intervention provides an example of this model in action. A pilot of this initiative demonstrated a previously published conceptualisation of the inter-related elements leading to positive self-view to be inadequate. This article draws on current research, interpreted through the authors’ diverse disciplinary perspectives, to propose a more nuanced conceptual framework, built up through an iterative, layered approach. The article concludes with an assessment of this framework’s value in supporting patient-led palliative care interventions in the wider landscape of active community involvement in healthcare development.