Self-management issues and concerns in intermittent urinary catheter users

Background: Self-management research related to intermittent catheterization (IC) could lead to improved compliance with the method as well as better quality of life. This study was an attempt to identify issues and concerns of intermittent urinary catheter users self-management needs for future research and/or training programs. Methods: This cross-sectional descriptive study involved in-depth tape-recorded telephone interviews with people using permanent IC, mostly those with spinal cord injury or multiple sclerosis. Recruitment was through several Internet sites where persons could link to the study website and then contact the researchers. The sample included 34 participants, 13 males and 21 females, aged 21-72 (mean 42 years). Content analysis for qualitative data involved iterative comparisons of summaries, transcripts, and memos. Coding, key quotes, and tables were developed to determine themes. Results Intermittent catheterization was described as a part of living with a disability or disease. Perceptions varied from feeling very positive related to freedom from being wet to rather negative due to some of the problems, such as frustration in lack of adequate bathroom access, urinary tract infections, or the inconvenience of doing the procedure. Public bathrooms often were inaccessible--lacking in privacy or enough space to manage the catheterization while in a wheelchair--as well as being dirty. This could interfere with being able to go to work, travel, or be with friends and family, and some traded their dignity for their freedom to get out of the home. Study participants told of having to leave the bathroom door open when catheterizing or resorting to catheterizing in a parking lot when no bathroom was accessible. Insurance coverage for catheter supplies was a major concern to many people. While some individuals had choices in catheters and supplies, many did not due to insurance constraints. People often had to purchase needed equipment out of pocket, which most disabled people could ill afford. Conclusions: Advocacy is needed to attain more accessible, private, and clean public bathrooms and full insurance coverage of catheter supplies. Public Health Nurses can work with others to promote social justice for this vulnerable population of disabled individuals by improved public policy.