This qualitative study aims to describe communication patterns of women with early breast cancer when explaining (neo)adjuvant chemotherapy to their children.
Oncologists and breast care nurses identified women who received adjuvant or neoadjuvant chemotherapy for early breast cancer within the last 5 years, with ≥1 child(ren) aged 0-12 years at time of chemotherapy. Recruitment continued until data saturation. Women participated in a face-to-face semi-structured interview conducted by one researcher. Interview data was coded and categorised into three domains: goals, strategies, and outcomes. Thematic analysis was then performed on the data.
16 mothers of 32 children under 12 were interviewed. The median age of the women was 42 years (range 32-55) and all were married (n=13) or in a defacto relationship (n=3). The median age of the children was 7 years (range 1-12). The main goals of communication were to: keep children informed; provide reassurance; establish expectations early to prevent shock; and maintain normality in children’s lives. Most women explained chemotherapy side effects (n=15), prognosis (n=14), and purpose (n=11). Only half described the treatment as “chemotherapy” or “chemo” (n=8). Most women (n=11) received educational resources; yet several (n=6) identified a need for improvement in their quality, relevance and/or availability. Common techniques used to explain chemotherapy were metaphors (n=4), relaying experience of friends or family (n=5), and storybooks (n=3). Most children were perceived by their mothers to understand the concepts of sickness and medicine (28 of 32), while only 13 understood the concept of (neo)adjuvant chemotherapy. Most women aimed to communicate honestly (n=10), yet some withheld potentially frightening information (n=4). Most women found their children surprisingly resilient and perceptive (n=10).
(Neo)adjuvant chemotherapy is a complex concept for children to understand. There is a need for more accessible, age-appropriate communication tools to help mothers explain chemotherapy to their children.