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

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.

Informal caregivers' needs on discharge from the spinal cord unit: analysis of perceptions and lived experiences

“…As revealed by participants, and as already stated by other studies [6,17,28], we find that addressing the personal and physiological needs of an assisted person can decrease complicity and the intimate relationship of a marriage. Results highlight the feeling that there is a loss of spontaneity, romanticism, with little time to devote to the couple's intimacy.…”

“…Indeed, we are facing a redefinition of the partner's role, supported by a radical change in the couple's dynamics, and this is also reported in previous studies [16,17].…”

“…The study emphasizes the challenging impact of SCI on caregivers, characterized in the early stages by negative feelings such as anger and even despair, as widely reported in the international literature [2,6,17].…”

“…The changes in their daily habits are just as fatiguing as those experienced by their beloved. In the relationship with the SCI survivor, they often cover the dual role of lover and care provider that leads to the loss of their previous identity [2,17].…”

Disability, partnership and parenting

“…A significant amount of work has been conducted internationally and in the UK in relation to impairment through sudden injury and marriage experience (rather than whether people enter into marriage or other partnership relationships or not); examples of such work in the UK include explorations of the 'role change' women partners of men with head injury report (Gosling and Oddy 1999) and spouse experience of a partner's spinal cord injury involving a move from partner to carer role (Dickson et al 2010). Such work is individually and psychologically orientated rather than concerned significantly with social barriers and socially created relationship change or difficulties.…”