OBJECTIVE

Regardless of its negative impact on quality of life, little is known about the importance of alopecia from the patients' perspective. This study aimed to explore the whole experience of chemotherapy- induced alopecia among Korean breast cancer patients including perception, attitudes, preparedness, and changes after alopecia.

METHODS

Patients expected to experience or had experienced alopecia were recruited at a tertiary hospital in Seoul, Korea. Semi-structured in-depth interviews were performed in 21 patients. Recurrent issues were identified and placed into thematic categories.

RESULTS

All patients think that appearance is important and they pay attention to how they look like. They had negative perceptions about alopecia. Patients were not well prepared for alopecia, and experienced substantial physical, psychological and social distress. Lack of information and limited social support combined with negative images of cancer made it difficult for patients to overcome the trauma and deterred them from usual daily activities resulting in poor quality of life.

CONCLUSIONS

Patients were not well prepared for alopecia and negative perceptions, lack of preparedness, and limited social support and resources increased alopecia- related distress. Educational programs for preparing patients to cope with alopecia distress and advocate activities to change people's negative perception about alopecia are needed to reduce the burden imposed by alopecia in cancer patients.