The impact of assuming the primary caregiver role following traumatic spinal cord injury: An interpretative phenomenological analysis of the spouse's experience |
| |
Authors: | Adele Dickson Grainne O’Brien Richard Ward David Allan Ronan O’Carroll |
| |
Institution: | 1. School of Health &2. Social Sciences, Napier University , South Craig, Craighouse Campus, Edinburgh, EH10 5LG, UK a.dickson@napier.ac.uk;4. Case Management Services , Main Street, Edinburgh, EH14 7EQ, UK;5. The Royal Bank of Scotland Centre for the Older Person's Agenda, Queen Margaret University , Edinburgh, EH21 6UU, UK;6. Queen Elizabeth National Spinal Injuries Unit for Scotland, Southern General Hospital , Glasgow, G51 4TF, UK;7. Department of Psychology , University of Stirling , Stirling, FK9 4LA, UK |
| |
Abstract: | This study aimed to explore the lived experience of assuming the primary caregiver role in a group of spouses of individuals living with a traumatic spinal cord injury (SCI) (injuries ranged from paraplegia to quadriplegia). Individual in-depth interviews were conducted with 11 participants who were both the spouse and primary caregiver of an individual with a SCI; of these, 10 were female and 1 was male. All interviews were transcribed verbatim and were subjected to interpretative phenomenological analysis (IPA). Here we present three inter-related master themes: ‘The emotional impact of SCI’; ‘Post-injury shift in relationship dynamics’ and ‘Impact of caregiving on identity’. Regarding the emotional impact of spinal injury, participants reported an almost instantaneous sense of loss, emptiness and grief during the injured person's rehabilitative period and feelings of anxiety were reported in anticipation of their return to the family home. A distinct change in role from spouse and lover to care provider was reported and this ultimately contributed to relationship change and a loss of former identity. The findings are discussed in relation to extant caregiver literature and recommendations for future caregiver support are highlighted. |
| |
Keywords: | spinal cord injury carer partner caregiver identity relationship difficulties IPA |
|
|