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

AIM: Explore experiences and choices related to bowel management following spinal cord injury.

BACKGROUND

In one UK spinal centre, more are choosing a colostomy soon after injury in contravention of professional guidelines. Reasons for this were unknown.

METHODS

Grounded theory study using semi-structured interviews with 12 individuals living with spinal cord injury.

RESULTS

All '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.

CONCLUSION

Possessing 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 CARE: An imperative emerges to make information and choice available and involve patients in the reconstruction of guidelines.

IMPACT: Unique 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 METHOD: EQUATOR Standards for Reporting Qualitative Research (SRQR) were adhered to.

PATIENT OR PUBLIC CONTRIBUTION: The methodology facilitated discussion of areas important to patients and made them co-constructors of theory.