Living with a permanent ostomy: a descriptive phenomenological study on postsurgical experiences in patients with colorectal cancer.

Abstract

Objectives: To explore the postsurgery lived experiences of patients with colorectal cancer with a permanent ostomy for informing initiatives to improve patient care and future quantitative research.

Design: A descriptive qualitative phenomenological study.

Setting: We conducted this study in the Colorectal Cancer Division at the Cancer Center of West China Hospital, Sichuan University, a premier institution renowned for its comprehensive cancer care and research.

Participants: 12 patients who had undergone surgeries for colorectal cancer with a permanent ostomy.

Results: Our interviews revealed profound adjustments in the lives of colorectal cancer survivors living with permanent ostomies. Participants articulated a transition to a 'new normal', characterised by extensive daily life adjustments, psychological adaptation and ongoing management challenges. Key themes identified included the adaptation to a reshaped daily routine and altered perceptions of quality of life. Many faced substantial challenges in stoma care, requiring significant learning and adaptation. Psychological adaptations were marked by a redefinition of body autonomy and personal identity, alongside a recalibration of social interactions and privacy. The need for robust professional guidance and a comprehensive social support system was universally emphasised.

Conclusions: Patients with colorectal cancer with permanent ostomies navigate significant changes in their lives postsurgery, undertaking a complex process of reconstructing and adapting to a new normalcy. They recalibrate their physical, psychological and social well-being, demonstrating resilience and adaptability in the face of these challenges. Their pervasive expression of needs for information and support may reflect gaps in the existing patient education and support measures and communication strategies. Healthcare professionals and policy-makers should adopt a patient-centred approach acknowledging the multifaceted nature of postsurgery recovery and adaptation by fostering open communication, tailoring personalised education and facilitating supportive community networks.