Social Activity and Relationship Changes Experienced by People with Bowel and Bladder Dysfunction Following Spinal Cord Injury

Study Design: Exploratory qualitative.

Objectives: The aim of this study was to describe the experiences of bowel and bladder dysfunction on social activities and relationships in people with spinal cord injury living in the community.

Setting: People living with spinal cord injury experiencing bowel and bladder dysfunction.

Methods: Participants were recruited through the Australian Quadriplegic Association Victoria. Semi-structured in-depth interviews were undertaken with purposively selected participants to ensure representation of age, gender, spinal cord injury level and compensation status. A thematic analysis was performed to interpret patient experiences.

Results: Twenty-two participants took part in the study. Bladder and bowel dysfunction altered relationships because of issues with intimacy, strained partner relationships and role changes for family and friends. A lack of understanding from friends about bladder and bowel dysfunction caused frustration, as this impairment was often responsible for variable attendance at social activities. Issues with the number, location, access and cleanliness of bathrooms in public areas and in private residences negatively affected social engagement. Social activities were moderated by illness, such as urinary tract infections, rigid and unreliable bowel routines, stress and anxiety about incontinence and managing the public environment, and due to continuous changes in plans related to bowel and bladder issues. Social support and adaptation fostered participation in social activities.

Conclusion: Tension exists between managing bowel and bladder dysfunction and the desire to participate in social activities. Multiple intersecting factors negatively affected the social relationships and activities of people with spinal cord injury and bowel and bladder dysfunction.