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.
Individual semi-structured interviews were conducted with 17 individuals who had experienced a traumatic spinal cord injury (SCI), focusing on the participants' lived experience of SCI. The interviews were transcribed verbatim and were analysed for recurrent themes using interpretative phenomenological analysis (IPA). Here, we present three inter-related recurrent themes all concerning difficulties in adjusting to home life following hospital discharge: "loss of camaraderie", "lack of post-discharge care" and "other people's reactions to spinal cord injury". Participants reported that the camaraderie they formed with fellow patients during their rehabilitative stay in hospital generated feelings of security and community. This was discussed in stark contrast to the isolation and loneliness that they subsequently experienced post-hospital discharge. A perceived lack of physical, practical and psychological support coupled with negative and stigmatising reactions of the wider community served to make adjustment to home life post-SCI particularly difficult for the participants. The findings are discussed in relation to extant SCI literature, and recommendations for future health care of individuals with SCI are made.
Semi-structured interviews were conducted with 11 spousal caregivers to people with a traumatic spinal cord injury and were subjected to interpretative phenomenological analysis (IPA). Here, we present two inter-related master themes: (1) coping with the spousal caregiver role; and (2) putting the pieces back together again. Within these, the analysis describes how regular venting of emotion, social support and focusing on the positive aspects of the situation all promoted coping. Adjustment was reportedly hindered by the introduction of paid caregivers as this represented a loss of privacy and power for the participants. The findings are discussed in relation to the wider literature and recommendations for future caregiver support are highlighted.
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