Phenomenological study of neurogenic bowel from the perspective of individuals living with spinal cord injury.

OBJECTIVE

To gain greater insight into the lived experience of individuals with spinal cord injury (SCI) and neurogenic bowel dysfunction (NBD).

DESIGN

Qualitative (phenomenologic) interviews and analysis.

SETTING

Community.

PARTICIPANTS

Individuals with SCI and NBD (N=19) residing in the community.

INTERVENTIONS: Not applicable.

MAIN OUTCOME MEASURE: Concerns related to living with NBD after SCI.

RESULTS

Challenges related to living with SCI and NBD included costs and requirements, emotional impact, diet, education and employment, intimacy and interpersonal relations, social participation, spontaneity and daily schedule, travel, lack of appropriate and consistent assistance, loss of autonomy (independence, privacy), lack of predictability and fear of incontinence, medical complications, pain or discomfort, physical effort of the bowel routine, physical experience, and time requirements.

CONCLUSIONS

Living with NBD presents many challenges. When categorized according to the International Classification of Functioning, Disability and Health, identified domains include body functions and structures, activity, participation, environmental factors, and personal factors. Identified issues have implications for improving clinical management and should be assessed when determining the impact and efficacy of interventions.