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

Anthony S Burns; Daphney St-Germain; Maureen Connolly; Jude J Delparte; Andréanne Guindon; Sander L Hitzig; B Catharine Craven

doi:10.1016/j.apmr.2014.07.417

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

Arch Phys Med Rehabil. 2015 Jan;96(1):49-55. doi: 10.1016/j.apmr.2014.07.417. Epub 2014 Aug 27.

Authors

Anthony S Burns¹, Daphney St-Germain², Maureen Connolly³, Jude J Delparte⁴, Andréanne Guindon⁵, Sander L Hitzig⁶, B Catharine Craven⁷

Affiliations

¹ Division of Physiatry, Department of Medicine, University of Toronto, Toronto, ON, Canada; Brain and Spinal Cord Rehabilitation Program, University Health Network-Toronto Rehabilitation Institute, Toronto, ON, Canada. Electronic address: anthony.burns@uhn.ca.
² Faculty of Nursing Science, Laval University, Pavillon Ferdinand-Vandry, Quebec City, QC, Canada.
³ Faculty of Applied Health Sciences, Brock University, Saint Catharines, ON, Canada.
⁴ Brain and Spinal Cord Rehabilitation Program, University Health Network-Toronto Rehabilitation Institute, Toronto, ON, Canada.
⁵ Interdisciplinary Center in Rehabilitation and Social Integration, Quebec City, QC, Canada.
⁶ Institute for Life Course and Aging, Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
⁷ Division of Physiatry, Department of Medicine, University of Toronto, Toronto, ON, Canada; Brain and Spinal Cord Rehabilitation Program, University Health Network-Toronto Rehabilitation Institute, Toronto, ON, Canada; Neural Engineering and Therapeutics Team, University Health Network-Toronto Rehabilitation Institute, Toronto, ON, Canada.

PMID: 25172370
DOI: 10.1016/j.apmr.2014.07.417

Abstract

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.

Keywords: Neurogenic bowel; Paraplegia; Quadriplegia; Qualitative research; Rehabilitation; Spinal cord injuries.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Diet
Employment / psychology
Humans
Interpersonal Relations
Middle Aged
Neurogenic Bowel / etiology*
Neurogenic Bowel / psychology*
Pain / etiology
Quality of Life*
Social Participation
Spinal Cord Injuries / complications*