Ten years of living with an injured spinal cord: A qualitative longitudinal study.

ABSTRACT

Purpose: Rehabilitation and recovery following spinal cord injury often implies a fundamentally changed life. The aim of this study was to explore the process of living with spinal cord injury for 10 years to identify which factors were most decisive for living a fulfilled life. Materials and methods: The present study was a 10-year longitudinal qualitative study based on Ricoeur's hermeneutic-phenomenological approach to explore and interpret people's experiences of life during the first 10 years after they had suffered a spinal cord injury. Interviews were conducted with 10 people during the first year and then again after two, five and 10 years. Results: The process over 10 years showed that a satisfying life can be led despite limitations caused by the damaged spine by balancing possibilities and the life wished for. Reduced body function did not have to hinder people from living a satisfying life. Bodily issues can move into the background when new skills and routines are developed. This enabled backgrounding body conditions, letting other matters foreground. Thus, life can be experienced as good and can resemble the lives of other people of the same age, though strains and struggles were an integrated part of every activity. However, the new normal was disturbed when bodily conditions could not be kept stable or worsened due to illness, often related to the damaged spine. If this challenged the new way of living, the body foregrounded and became the primary focus for effort and attention, and the process of balancing possibilities and the life wished for had to be repeated. Conclusions: Life 10 years after spinal cord injury can be experienced as good despite limitations, partly resembling life lived by other same-aged people. Having stable bodily conditions allowed other matters to foreground. This was important to the process of reconciling oneself to the situation and balancing possibilities and the life wished for.