Adolescent Perspectives Following Ostomy Surgery: A Grounded Theory Study

Purpose: This study provides a theoretical account of how adolescents ages 13-18 years process the experience of having an ostomy. This experience has not been studied in the adolescent age group, nor has grounded theory methodology been utilized to study this experience.

Background: Literature is sparse regarding adolescent experiences and perceptions of having an ostomy. A better understanding of how adolescents process the experience of having an ostomy will contribute to the improvement in the provision of adolescent ostomy care.

Method:  Using a qualitative grounded theory design, interviews were conducted with twelve English speaking adolescents ages 13- 18 years who had experienced an ostomy. Data was analyzed using the constant comparative method until data saturation occurred. Dedoose, a web-based qualitative methods management tool, was used.

Results:Findings represent four major themes: 1) reviewing the illness experience 2) determining how, when, and to whom to disclose; 3) responding to the ostomy experience and 4) experiencing personal changes. Reviewing the illness experience included how adolescents experienced a long emotional and frustrating history of illness prior to having an ostomy. Determining when, how and to whom to disclose included both the underlying illness and presence of the ostomy. Responding to the ostomy experience included responses of the adolescent, peers and family members. Personal changes involved how adolescents perceived themselves as changing after the ostomy experience.

Conclusions: Understanding how adolescents process the experience of having an ostomy can be used to enhance the education of healthcare providers in the provision of adolescent ostomy care.