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.

A qualitative exploration of how individuals reconstruct their sense of self following acquired brain injury in comparison with spinal cord injury

“…Second, the predominant notion of a 'loss' or 'shattered' sense of self following injury and its subsequent reconstruction was highlighted in the literature that explores the narratives of individuals with ABI and individuals with SCI [8,12,17,18]. 'Loss of self' refers to a sense of grief and longing for the self and life that once was and 'reconstruction of self' refers to the process of the individual rebuilding a new post-injury identity.…”

“…The aforementioned discontinuity of self was explained by emphasizing the multifaceted nature of self. Self was divided into aspects that remained the same, an 'inner' self or core essence, and aspects of self that had changed, an 'outer' self, indicative of changes in bodily functioning, relationships with others and links to society [8,17,18].…”

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

“…Previous research has highlighted significant loss which encompasses virtually all domains of the injured person's life (Belciug, 2001) including a loss of control, pleasure, sensation, independence, identity and spontaneity (Weller & Miller, 1977;Manns & Chad, 2001;Hampton & Qin-Hilliard, 2004;Dickson, Allan & O'Carroll, 2008). This often has a negative impact on quality of life (Mukai & Costa, 2005), results in reduced self-esteem, self-worth and a loss of motivation (Fichtenbaum & Kirshblum, 2002) and consequently, difficulties in accepting the new disabled self (Hancock, Dickson, Chang et al, 1993).…”

The experiences of support persons of people newly diagnosed with multiple sclerosis: an interpretative phenomenological study

“…IPA has been used in a number of biographical studies researching in chronic illness (Dickson et al, 2008a;Dickson et al, 2008b;Dickson et al, 2011) (Smith et al, 2009). For example, the use of the personal pronoun (I or you) in interview transcripts when participants were describing the impact of MS on the self was particularly relevant to assess the use of distancing language, or considering the emphasis placed on experiences described through the use of repetition and metaphors (Smith et al, 2009).…”