The lived experience of breast cancer survivorship of Saudi Arabian women

Background: There is a debate in the literature about how breast cancer survivors perceive themselves and make sense of their experiences. This conflict has emerged from cancer advocacy communities who attach positive meaning to breast cancer survivorship, and women with breast cancer that do not always share this positive view. Women who have had breast cancer often face difficulties as to how to make sense and understand their breast cancer experiences, and specifically, the ways in which cultural sensitivities impact and shape their perceptions about breast cancer survivorship. In Saudi Arabia, the increased length of survival of breast cancer patients, the younger age at diagnosis, and the unique cultural norms and values all suggest how important is to explore the experience of breast cancer survivorship lived by young Saudi Arabian women. Methods: This is a qualitative interpretive phenomenological study. Narrated data includes 18 interviews with Saudi women aged between 30-50 years who had completed their treatment 6-47 months prior to the semi-structured interview. The data that reflect women’s experiences begin with diagnosis through treatment and afterwards. The data were then articulated and translated into the English language. The verbatim transcripts were analysed using the Interpretive Phenomenological Analysis (IPA). The life-world framework and its fractions (embodiment, social, selfhood, discourse, project and time perspectives) were used to gain a sense of what women encounter during their lived experiences. Findings: The analysis produced five superordinate themes. These were: survivorship experience;cancer change me; identity, faith and belief; and health care experience. These themes showed most of the women perceived breast cancer as a deadly disease. Some participants tried to keep their diagnosis hidden from the public and even from their families. Women often had difficulties with psychological adjustment to the physical side effects of breast cancer treatment. Infertility and post-menopausal symptoms were the main reported physical issues. They expressed feelings of fear of recurrence, living with loss, and being lonely; they had concerns for maintaining personal and social relationships. Women faced challenges in carrying out their roles as mothers, wives, and daughters and in keeping the family systems functioning. They constructed their illness experience, restructured their ways of living to accommodate breast cancer’s cultural perception, their fear of the devil’s eye and their sense of body and self. Their attitudes towards being defined by their illness were varied. Some women embraced being fighters against cancer and the cultural norms. On the other hand, most believed that surviving breast cancer was a result of God’s will and viewed their experience as a ‘test’ and ‘wake-up call’ to what was important in life. Survival was linked to normality and resuming their activities previous to their breast cancer diagnosis. Some women shared needs concerning health care practice, communication and patient preparation and information. While some participants felt that there was a need for shared decision making in their care, some healthcare providers were obligated to follow cultural norms in involving male relative when breaking bad news and discussing the patient’s care plan. Conclusion: This study helps to raise the awareness of Saudi women’s experience and highlights the need to develop a cultural model of breast cancer survivorship