1. Living with a long-term traumatic spinal cord injury in South Africa: experiences related to readjustment and attained participation (self-perceived)
Conran Joseph1 and Lena Nilsson Wikmar1
1Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Division of Physiotherapy
Conclusions
Metaphorically, there is ‘light at the end of the tunnel’ summarized the path to participation in life situations. Addressing the changed body, the identification of obstacles and the recognition of support, and the willpower to move forward were paramount for reconstructing a meaningful, participatory life.
Findings
Introduction
Life situations following a traumatic spinal cord injury (TSCI) is believed to be considerably altered; however, the dimensional range of those involvements affected among survivors residing in South Africa is poorly understood.
’There is light at the end of the tunnel’
This latent theme describes the experience of the path to participation in life situations. The four explanatory categories are described.
Categories and sub-categories of theme
Category
Sub-category
Dealing with the new self
Negative emotional outlet
Coping
Proceed with life
A journey dominated by obstacles
Challenges due to health condition (internal factors)
Challenges due to the environment (external factors)
Catalyst of participation: Peer support
Information-sharing and networking
Equal-minded friends
A common agenda
Becoming an agent
Reconstructed meaning
Resist possibilities of exclusion and isolation
Strategist
‘I have become involved in community, I went out, done things and made sure that others observe my entrance and respect one another’
‘I can’t wash myself anymore: that is one of the biggest problems for me. I don’t have control of my hands anymore. My sex life has changed, understand... Feeding myself has changed.
Purpose
To explore the experiences of survivors of TSCI towards regaining participation in life situations and to describe intervening conditions.
’Becoming an agent’
’A journey dominated by obstacles’
‘So, I have accepted it, and me being disabled is just like in another life, I would never have imagined it’
Method
Exploratory, qualitative design, using inductive content analysis.
17 community-dwelling persons, living with a TSCI for ≥ 3years, were individually interviewed.
Maximal sampling variation was considered.
‘You feel much more free to discuss your personal issues with someone that knows what he/she ‘s talking about…”
’The catalyst of participation: Peer support’
’Dealing with the new self’
Varying time for each participant
Conran Joseph (PhD candidate)
Department of Neurobiology, Care Sciences and Society
Division of Physiotherapy
; cell:
Future work will focus on the conceptual development of participation and integration from the perspective of survivors of traumatic spinal cord injury in South Africa.