Difficulties adjusting to post-discharge life following a spinal cord injury: An interpretative phenomenological analysis

Abstract

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.

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).…”

The Inner Resource: Enabling the Designer within Us All – A Case Study

“…In contrast to the busy, supportive community of individuals with the same broad SCI conditions found in QENSIU, survivors returning to the community experience, e.g. a 'loss of camaraderie', 'lack of post-discharge care' and 'other people's [negative] reactions to SCI' (Dickson et al, 2011b). They can also have 'difficulties in accepting the new, disabled self' and it can take five to seven years to adapt and reach 'stability'.…”

“…One issue which emerged from Dickson et al (2011b) was in adapting to home life post-discharge, a stark contrast to life in the rehab unit. There appeared to be potential for using scenario-building and narrative techniques as either a way of anticipating, whilst still in QENSIU, what some of the issues might be post-discharge before this stage occurs or how improvements could be made to the status quo once back in the community.…”

“…Although participation in Paralympic-type activities allows the assimilation of SCI survivors into the competitive sports mainstream, and although the attainment of physical strength and development of a determined mindset are perhaps necessary attributes for SCI survivors, the author wondered if there was room to explore other 'images of self' if one was not predisposed to the 'athletic' image. Another dimension to this is how one could approach the issue of portraying people with SCI disabilities to the wider community to address both the 'social stigma' issue identified in Dickson et al (2011b) and also a point raised by QENSIU: 'Our interest in the design process is to define a core generic pathway that can be individually tailored'. Examples of how image and identity is being used to explore gendered and ageing identities were shown, e.g.…”

“…They can also have 'difficulties in accepting the new, disabled self' and it can take five to seven years to adapt and reach 'stability'. Adaptation is required at three levels, at the: i) individual (a strong desire for independence for successful adjustment); ii) social (reintegration as an active member of the community and enhances self-worth and esteem); and iii) environmental (accessibility and the public's attunement in interactions with disabled individuals) levels (Dickson et al, 2011b). Noticeably, the SCI 'patient voice' is largely absent from the literature, revealed in only a few studies, such as in Dickson et al (2011a, b).…”