The choice for colostomy following spinal cord injury: A grounded theory study

Abstract

AbstractAimExplore experiences and choices related to bowel management following spinal cord injury.BackgroundIn one UK spinal centre, more are choosing a colostomy soon after injury in contravention of professional guidelines. Reasons for this were unknown.MethodsGrounded theory study using semi‐structured interviews with 12 individuals living with spinal cord injury.ResultsAll ‘Experienced Loss’ related to bowel function. Those who chose colostomy later ‘Progressed into Suffering’. Colostomy transformed lives and was likened to ‘Being Alive Again’. ‘Failures of Care’ contributed to experiences and decision‐making.ConclusionPossessing information and choice emerge as key in transforming lives following spinal cord injury. They allow individuals to make choices from a lifeworld perspective, which may differ from those professionals assume. Present neurogenic bowel management guidelines fail to account for the wider lifeworlds of those they are designed for.Implications for the Profession and Patient CareAn imperative emerges to make information and choice available and involve patients in the reconstruction of guidelines.ImpactUnique knowledge emerges about patient experiences and motivations, and points to a patient‐led revolution in how bowel management following spinal cord injury is understood and managed. The imperative for adequate access to information and choice is demonstrated.Reporting MethodEQUATOR Standards for Reporting Qualitative Research (SRQR) were adhered to.Patient or Public ContributionThe methodology facilitated discussion of areas important to patients and made them co‐constructors of theory.