The impact of assuming the primary caregiver role following traumatic spinal cord injury: An interpretative phenomenological analysis of the spouse's experience

Citation

Dickson A, O'Brien G, Ward R, Allan D & O'Carroll R (2010) The impact of assuming the primary caregiver role following traumatic spinal cord injury: An interpretative phenomenological analysis of the spouse's experience. Psychology and Health, 25 (9), pp. 1101-1120. https://doi.org/10.1080/08870440903038949

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 (injuries ranged from paraplegia to quadriplegia). Individual in-depth interviews were conducted with eleven participants who were both the spouse and primary caregiver of an individual with a spinal cord injury; of these, ten were female and one 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 spinal cord injury”; “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; Spinal cord Wounds and injuries; Spinal Cord Injuries nursing; Rehabilitation Nursing; Nurse-Patient Relations

Journal
Psychology and Health: Volume 25, Issue 9

People

Professor Ronan O'Carroll

Professor, Psychology

Dr Richard Ward

Senior Lecturer in Dementia, Dementia and Ageing