Women's experiences of living with neurogenic bladder and bowel after spinal cord injury: life controlled by bladder and bowel

Abstract

Purpose: Neurogenic bladder and bowel (NBB) is a chronic condition hindering the functioning and quality of life (QOL) of people with spinal cord injury (SCI). NBB research has focused on men with SCI leaving unanswered questions about women's experiences of living with NBB. The purpose of this study was to identify and describe women's experiences of living with SCI and NBB. Method: Secondary analysis of semi-structured interviews from a larger qualitative study of women with SCI (N = 50) was carried out. Transcripts were coded for bowel and bladder content. Pile-sorting techniques were used to identify emergent themes related to NBB. Meta-themes were categorized under the International Classification of Functioning, Disability and Health. Results: Bladder and bowel topics were spontaneously discussed by 46 out of 50 study participants suggesting the salience of this issue for women with SCI. We identified 6 meta-themes: life controlled by bladder and bowel, bladder and bowel accidents, women's specific challenges, life course disruption, bladder and bowel medical management, and finding independence. Conclusions: Findings describe concerns, strategies, and the detrimental impact of NBB in the lives of women with SCI. Findings inform policy makers, health care and rehabilitation professionals to improve accessibility and quality of life for women with NBB.

Implications for Rehabilitation

• Women with spinal cord injury (SCI) reported gender specific challenges to living with neurogenic bladder and bowel (NBB). Interventions designed for women with SCI can address these problems and provide recommendations for prevention and treatment.

• Women described the detrimental impact of NBB on life course expectations, emotional, social, physical health, and quality of life domains. Psychosocial and educational programs can be developed to address these challenges and improve overall quality of life.

• Recommendations for special treatment and policy considerations are needed to maximize women's independence and health while living with NBB after SCI.

• Bladder
• bowel
• qualitative research
• spinal cord injury
• women

Declaration of interest

This study was supported in part from a post-doctoral research training grant from the National Institute on Disability and Rehabilitation Research (#H133P090008). The parent study was funded by a grant from the National Institute on Disability and Rehabilitation Research (#H113G020060). The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs.