Biographical disruption and the experience of loss following a spinal cord injury: An interpretative phenomenological analysis

Abstract

Individual in-depth interviews with eight people who had experienced a total spinal cord injury were conducted, focussing on the experience of living with a spinal cord injury. The interviews were transcribed verbatim and were analysed for recurrent themes using Interpretative Phenomenological Analysis (IPA). Here we present three inter-related recurrent themes: ‘Loss of control’; ‘Loss of independence’ and ‘Loss of identity’. Participants reported an ongoing sense of loss, characterised largely by a diminishing sense of personal control. This loss of personal control manifested itself in incontinence, emotion and loss of movement. Helplessness and embarrassment were common responses. A loss of independence was associated with incontinence but also with a loss of spontaneity. A loss of identity ensued and participants reported feeling ‘invisible’. The findings are discussed in relation to both extant spinal cord literature and chronic health literature. Recommendations for future research are suggested.

Keywords:

• Spinal cord injury
• loss
• identity
• incontinence
• IPA

Acknowledgements

Authors thank all the participants for their time, and The Queen Elizabeth National Spinal Injuries Unit for Scotland, Southern General Hospital, Glasgow for their co-operation.