The Experience of Living with Spinal Cord Injury in the Early Months following Discharge from Rehabilitation: A Qualitative Study on a Male Sample
Motivation for study:
- To explore ‘What is it really like to leave home one day as an able-bodied person and return some months later following rehabilitation in a wheelchair and with significant bodily impairments?
- As a response to the frequent accusation ‘But you don’t know what it is really like’ and a desire to get as close as possible to that experience by asking those who really know.
- To gather information on an Irish population.
- To explore the process of discharge which has been likened to ‘jumping off a cliff’, ‘entering a new foreign world and ‘walking into darkness’.
Aim: To explore the impact of Spinal Cord Injury (SCI) on identity by means of the following research question:
‘How do men with SCI describe their experience of living with significant disability in the early months following discharge from an SCI rehabilitation unit?’.
A systematic review of 20 years of qualitative literature on the male experience of SCI confirmed that the main effect of SCI was on identity (not easily accessed using quantitative methodologies). A critical period for the conscious realisation of the extent of personal and practical change necessitated by injury must be the period immediately following rehabilitation. Therefore an in-depth exploration of that period in the evolution of identity was selected as the focus of study as it might have benefits for others going through that experience and for staff who presume to facilitate it.
Process: 5 participants (aged 32-46) between 2 and 6 months post-discharge with levels of injury ranging from C5 complete to L1 incomplete. All were or had been married. 4 had sustained injury in Road Traffic Accident’s and one in the workplace. 4 were interviewed in NRH and one at home.
Methodology: Interpretative Phenomenological Analysis (IPA) a qualitative methodology increasingly popular in health psychology. Essentially it is a very detailed thematic analysis of semi-structured interviews. IPA – akin to ‘drowning in a deep bowl of spaghetti’!
Results: A set of themes specific to each individual were identified prior to identifying common themes. Essentially all the men supported research findings in relation to appraisal and coping as each of them were tackling SCI as a challenge and working on ways to manage that challenge in a determined way. Individual themes were identified as follows:
- ‘Living in a world governed by everybody else’
- ‘From able-bodied to disabled to able-bodied again’
- ‘Learning to manage my own care at my own pace in my own way’
- ‘Getting a second chance at life’
- ‘Battling to return to normality’
Three common themes were identified as follows:
‘I’m the same but different: continuity and change of self’ capturing the impact of SCI on identity. Theme one had two sub-themes as follows:
- Changes of self
- Continuity of self
‘It’s definitely different: learning to manage an altered body’ reflecting the task of dealing with altered body function. Theme two had two sub-themes:
- Managing bodily functions
- Managing bodily restrictions
‘Seeing things differently: from catastrophe to challenge’ relating to appraisals, coping and resilience in the face of change and challenge. Theme three had two sub-themes:
- SCI as challenge
- New appreciations and benefit finding
Summary: the lived experience of SCI in the early months post discharge for participants in this study involved a re-organisation of identity firmly based on continuity as well as disruption, a familiarisation with altered bodies and the development of new appreciations, as both cause and consequence of approaching SCI as a complex challenge.
Implications for rehabilitation:
- Main aim of using a phenomenological approach is to increase thoughtfulness ‘we gather other peoples experiences because they allow us to become more experienced ourselves’ (Van Manen). Patients and health care professionals can live in worlds with very different structures of meaning and understanding and while there is much talk of patient centred care there is little research available on the patient experience of rehabilitation or of acquired disability.
- Rich data on an Irish population to enhance provision of care.
- Highlights importance of individual differences.
- Importance of emphasising a sense of continuity as well as change (which may well clash with an increasingly regulated rehabilitation environment).
- Provides support for the finding that ‘Staff perceive more psychological suffering than people with spinal cord injury describe’ (Carpenter, 1994) and emphasises the need to move beyond the personal tragedy model of acquired disability. Strong emphasis on positive psychology constructs which are important in rehabilitation.
Final Report presented to the NRH Ethics Committee – January 2011