Adherence to bowel management programs in adolescents with neurogenic bowel conditions : an exploratory study

Ph.D. University of Hawaii at Manoa 2014.Includes bibliographical references.Purpose: Research about adolescents having a neurogenic bowel condition and adherence to their bowel management program (BMP) is limited. The Reasoned Action Approach (RAA) model utilized in this exploratory study identified the behavior, normative and control belief factors that influence an adolescent's ability to adhere to their BMP. Design: A questionnaire developed using the following scales based on the framework of the RAA model including the: 1) Children's Loneliness Questionnaire, 2) Depression Self-Rating Scale, 3) HARE Self-Esteem, 4) Rosenberg Self-Esteem, 5) Humphrey's Children's Perceived Self-Control Scale, and 6) Morisky's Self-Report Scale was completed by 30 adolescents aged nine through 22. Data collection consisted of demographic factors, questions pertaining to the knowledge of their BMP as well as facilitators and barriers to adherence to their BMP. Findings: Findings indicate a high level of adherence amongst adolescents enrolled in a regular school class versus a special education class (p= .016). In terms of knowledge, there is a significant relationship between increased awareness of the use of a BMP to control defecation and adherence to their daily BMP (p= .005). In analyzing normative beliefs, the Rosenberg Self-Esteem scale identified a relationship (p= .04) between self-esteem and adherence to a BMP. Minimized accidents, increased confidence and a feeling of "normalcy" were the three highest reported "benefits" to adhering to their BMP. Continued bowel accidents, feelings of being different from a normal teenager and the amount of time required were all identified as barriers to completion of their BMP. Information from two open-ended qualitative questions identified similar facilitators and barriers for adherence to the daily BMP. Facilitators included: 1) interventions to help ease defecation 2) overall benefits of having a BMP and 3) timing of their routine, while key barriers to adherence were reported as: 1) physical discomfort and side effects 2) timing and 3) need for physical assistance from others. Conclusions: The RAA model provided a multifocal framework for exploring the complexity of BMP adherence. Measurement of adherence is an ongoing challenge especially among adolescents where their developmental and physical needs are changing. In order to assist health care providers to motivate adolescents in assuming responsibility of their BMP care, more research is needed to validate the barriers and facilitators of adherence amongst adolescents with chronic fecal incontinence. One of the important findings that emerged from this study is the need to include an ongoing nonjudgmental assessment of an adolescent's feelings regarding their bowel management program. It is also valuable to obtain the parents or caregivers perspective so that potential conflicts are identified and plans of transitioning responsibility of care can occur from parent/caregiver to adolescent. Assessing their understanding of their bowel program and repeated (verbal and written) education will help to increase their knowledge base. Lastly, adapting the information according to the adolescents' cognitive abilities, motivation for maintaining their programs and simplifying the medical regime may increase their adherence and help them assume responsibility of their care