The impact of ostomy on colorectal cancer patients and caregivers: a qualitative study

Abstract

Introduction: Colorectal cancer is the third leading cause of cancer-related deaths worldwide. Its incidence has been rising in Africa due to urbanization and changing lifestyles. In Ethiopia, the lack of early diagnosis and specialized care places an additional burden on patients. Ostomy surgery, commonly used to manage advanced cases of colorectal cancer, significantly affects patients’ quality of life. Despite the well-documented challenges, there is a limited number of studies investigating the experiences of Ethiopian colorectal cancer patients and their caregivers. This study aims to explore the impact of living with an ostomy on both patients and their caregivers. Methods: The qualitative descriptive study with a phenomenological approach was conducted from February to May 2024 at St. Paulo Comprehensive Specialized Hospital, Ethiopia. Purposive sampling was used to recruit adult colorectal cancer patients with ostomies and their caregivers. In-depth individual and shared interviews were conducted using a semi-structured guide. Data quality assurance was maintained and analyzed using thematic analysis guided by family systems theory. Results: A total of 28 participants (14 patients and 14 caregivers) were included in the study. Thematic analysis identified seven themes across three domains. From the patients’ perspective, three themes emerged: psychological burden (altered self-image and confidence and sense of insecurity), daily challenges (routine care obstacles and lifestyle restrictions), and social detachment (self-stigmatization, self-imposed isolation, and identity loss). Caregivers highlighted two themes: role redefinition (practical challenges and loss of personal freedom) and caregiving burden (work-life balance and financial strain). Additionally, shared interviews with patients and caregivers revealed two further themes: challenges in communication (avoidance of difficult conversations and intimacy dynamics) and boundary negotiation (decision-making tension and evolving responsibilities). Conclusion and recommendations: The current study described the experience of colorectal cancer patients with ostomies and their caregivers within a family systems theory framework while revealing cultural factors such as social detachment, identity loss, and self-imposed isolation. The findings call for culturally sensitive interventions that address both emotional and social challenges. It emphasizes the need for support systems that encourage social reengagement and open communication, with a focus on holistic care that considers cultural context.