An exploration of how the timing of colostomy following spinal cord injury impacts on the individual.

Abstract

An emerging phenomenon in one UK spinal injury unit is the earlier choice for colostomy formation following spinal cord injury. This represents a perplexing deviation from professionally developed guidelines and widely accepted practice. With no existing theory to account for this change, research was performed with those choosing colostomy formation at differing time points following injury. The aim was to understand more about individuals’ experiences and the patient-initiated phenomenon. Starting with an appraisal of the Wider Landscape in which the phenomenon emerged, the research journey was made using constructivist Grounded Theory. Four major categories were discovered. ‘Experiences of Loss’ were found to result from bowel management practices. Reactions to this were either to ‘get used to it’ and ‘Progress into Suffering’, or to ‘reject guidelines’. The decision to undergo colostomy formation then arose from either a ‘continued lack of choice’ in those who progressed into suffering, or as an ‘active choice’ for those who rejected guidelines. Common to all was the transformative experience which colostomy brought of ‘Being Alive Again’. The fourth major category, ‘Failure of Care’, was understood and developed in relation to the wider Ideological, Professional, and Institutional contributions to these failures. The patient-initiated scientific revolution, which the choice of earlier colostomy formation represents, was found to stem from a rejection of professional bowel management guidelines developed through a biomedical lens which prioritises normalising physiological function. This clashes with insider perspectives which prioritise lifeworld goals and seek a bowel management method which will best accommodate the achievement of these goals. This research presents new knowledge in an area not previously described. It is hoped this will make the choice of colostomy, found to transform ‘Loss’ and ‘Suffering’ into ‘Being Alive Again’, more widely known about and available for those living with a spinal cord injury.