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
List of abbreviations:
ICF (International Classification of Functioning, Disability and Health), NBD (neurogenic bowel dysfunction), QOL (quality of life), SCI (spinal cord injury)To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to Archives of Physical Medicine and RehabilitationAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Management of neurogenic bowel dysfunction in the community after spinal cord injury: a postal survey in the United Kingdom.Spinal Cord. 2009; 47: 323-333
- Targeting recovery: priorities of the spinal cord-injured population.J Neurotrauma. 2004; 21: 1371-1383
- Bowel dysfunction in spinal-cord-injury patients.Lancet. 1996; 347: 1651-1653
- Long-term follow-up of bowel management after spinal cord injury.Sci Nurs. 1997; 14: 56-63
- Chronic gastrointestinal problems in spinal cord injury patients: a prospective analysis.Am J Gastroenterol. 1990; 85: 1114-1119
- Social discomfort in the patient with spinal cord injury.Arch Phys Med Rehabil. 1977; 58: 257-260
- Management of faecal incontinence and constipation in adults with central neurological diseases.Cochrane Database Syst Rev. 2013; 12: CD002115
- Qualitative research and case study applications in education.Jossey-Bass, San Francisco1998
- Qualitative research and evaluation methods.3rd ed. Sage, Thousand Oaks2002
- The descriptive phenomenological method in psychology: a modified Husserlian approach.Duquesne Univ Pr, Pittsburgh2009
- Researching lived experience – human science for an action sensitive pedagogy.SUNY Pr, Albany1990
Connolly M. Describing the phenomenological component within a multi method approach to exploring insiders’ experiences of ongoing management of post-spinal cord injury bowel programs. In: Interdisciplinary Coalition of North American Phenomenologists (ICNAP) Annual Conference and Annual General Meeting; 2012 May 25-27; New York, NY. Boca Raton: Interdisciplinary Coalition of North American Phenomenologists (ICNAP); 2012.
World Health Organization. International Classification of Functional, Disability and Health. Available at: www.who.int/classification/icf/en/. Accessed July 13, 2014.
- Clinical evaluation and management of neurogenic bowel after spinal cord injury.Spinal Cord. 2000; 38: 301-308
- Cisapride for constipation in spinal cord injured patient: a preliminary report.J Spinal Cord Med. 1995; 18: 240-244
- Characteristics of neurogenic bowel in spinal cord injury and perceived quality of life.Rehabil Nurse. 2012; 37: 128-135
- Colorectal function in patients with spinal cord lesions.Dis Colon Rectum. 1997; 40: 1233-1239
- A comparison of patient outcomes and quality of life in persons with neurogenic bowel: standard bowel care program vs. colostomy.J Spinal Cord Med. 2005; 28: 387-393
- Intestinal stoma in patients with spinal cord injury: a retrospective study of 23 patients.Hepatogastroenterology. 2008; 55: 2125-2129
- The effects of colostomy on the quality of life in patients with spinal cord injury: a retrospective analysis.J Spinal Cord Med. 2002; 25: 174-183
- Consensus review of best practice of transanal irrigation in adults.Spinal Cord. 2013; 51: 732-738
- The impact of stoma for bowel management after spinal cord injury.Spinal Cord. 2012; 50: 848-852
- Neurogenic bowel dysfunction score.Spinal Cord. 2006; 44: 625-631
- International bowel function extended spinal cord injury data set.Spinal Cord. 2009; 47: 235-241
- Reliability of the international spinal cord injury bowel function basic and extended data sets.Spinal Cord. 2011; 49: 886-892
Article info
Publication history
Published online: August 26, 2014
Footnotes
Supported by the Ontario Neurotrauma Foundation (grant nos. 2008-ONF-REPAR-601, 2009-SCI-NEURBOW-802, and 2011-ONF-REPAR2-885).
Disclosures: none.
Identification
Copyright
© 2015 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
