Abstract
Introduction: Children born with anorectal malformations, Hirschsprung disease, spinal cord defects, and related conditions have problems with constipation and fecal incontinence. In a large pediatric healthcare center, a weeklong outpatient program is offered to families, teaching daily high-volume enema administration. The purpose of this study is to assess the rate of adherence with daily enemas for bowel management and assess problems among children with elimination abnormalities.
Methods: A single-cohort observational study was conducted. Subjects included children ages 3-18 years and their parents who had attended a bowel management training program from April 2012 to December 2017. Data were collected utilizing an anonymous REDCap survey. Survey questions addressed adherence with daily enemas, supports and challenges, and parent-reported satisfaction and child acceptance.
Results: Surveys were sent to 112 parents, and 32 parents had completed the surveys. Approximately half of the sample, with a mean age of 9.9 years (SD = 3.7), adhered to daily enemas for bowel management. Parents reported a variety of problems and barriers to adherence with daily enemas, including child resistance (31.3%), difficulty retaining enema fluid (37.5%), cramping during enema (62.5%), time constraints (40.6%), getting or replacing equipment (28.1%), and bathroom space issues (25.0%). Sixty percent of the sample reported that enema administration requires more than 1 hour.
Discussion: In general, parents reported child acceptance, satisfaction, and limited difficulty with enema management; however, adherence was not as desired, and the rate of reported problems was high. Insight into problems experienced by parents provides nursing opportunity for educational programs that may improve adherence.