The lived experience of AYA mothers with advanced breast cancer.

Abstract

176 Background: Little is known about daily life experiences of young mothers with advanced breast cancer. Limited research suggests they face unique challenges differing from those of women at other life stages and with earlier stages of breast cancer. The larger study aimed to describe and interpret the lived experiences of young women with advanced breast cancer to contribute to our understanding of the needs of this population. Their role as mothers emerged as a significant theme. The goal of the overall study was to inform the development of person-centered interventions. Methods: Van Manen’s hermeneutic phenomenological method was employed in this longitudinal qualitative study. AYA women (25-39 years) with advanced breast cancer were purposively recruited via private Facebook groups specifically for women with breast cancer. Enrollment continued until thematic saturation was achieved. Data were collected through one or more semi-structured interviews over 6 months depending upon participant willingness, desire, or ability. Journals were provided to write additional thoughts. Data were drawn from interviews about daily life experiences. A major theme related to their identities as mothers emerged. Results: Twelve AYA women (mean age: 35.9) were included. All were married, had at least one child (10 months -14 years, median: 6.0 years), and most (n=7, 72.7%) worked full-time. Twelve participated in the first interview, 9 in a second interview, and 6 in a third interview. Three returned journals. The meaning of their experiences as mothers is captured by the theme: “ I’m Still Mom” and 7 subthemes: “ it’s so hard”, ” being a mom still”, “ what I can still do”, “there’s not enough time”, “being remembered”, “searching for resources”, and “ it’s not easy for my kids”. Conclusions: Being a mother is the first priority for these AYA women with advanced breast cancer, but they are hindered in their parenting activities by physical effects of their cancer and its treatment, uncertainty about their future, and worry for their children’s future. This study provides a base for further research on daily priorities for this population to inform future interventions to optimize quality of life consistent with their parenting priorities.