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.
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.
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.
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.
Connie Mantel, RN, CPN Reconstructive Pelvic Medicine Program, Seattle Children's, Seattle, WA.
Kristen Carlin, MPH Biostatistician, Children's Core for Biomedical Statistics, Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA.
Karen Thomas, PHD, RN Nurse Scientist, Nursing Practice, Professional Development, and Innovation, Seattle Children's, Seattle, WA; and Professor Emerita, University of Washington Department of Family and Child Nursing, Seattle, WA.
Funding for this study was received through the Seattle Children's Nursing Research Grant.
Correspondence: Connie Mantel, RN, CPN, Reconstructive Pelvic Medicine Program, Seattle Children's, 4800 Sandpoint Way NE, Seattle, WA 98105. E-mail: Connie.email@example.com