In their own words: A qualitative study of patient narratives on daily life after breast cancer radiotherapy
ObjectivesTo explore how former breast cancer patients (BCPs) experience the daily-life impact of radiotherapy (RT) side effects and to examine how these narratives can inform the selection of patient stories for the BRASA patient decision aid (BRASA-PtDA).MethodsSemi-structured interviews were conducted with fourteen former BCPs who completed adjuvant RT 6 months–5 years earlier. Thematic analysis identified locoregional, general, and overarching impacts on quality of life (QoL). Narrative excerpts were classified by type, purpose, and evaluative valence.ResultsParticipants described locoregional side effects (pain, reduced arm function, changes in breast appearance, skin irritation) and general effects (fatigue, concentration difficulties) affecting daily activities and self-perception. Three overarching themes—comparisons to the pre-treatment self, acceptance, and work—captured broader QoL impacts. All narratives were experiential or outcome-focused, mostly negative in valence. Thirteen balanced narratives were selected for potential inclusion in the BRASA-PtDA.ConclusionsNarratives from BCPs illustrate how RT side effects shape daily life and overall QoL. Structured narrative classification provided a transparent method for selecting stories for a decision aid. Future research should examine how different narrative types influence patient engagement and decision outcomes.InnovationTo our knowledge, this is the first qualitative study to examine how BCPs live with RT side effects, highlighting impacts on daily life that are under-communicated in current practice in the Netherlands and internationally. Findings provide rich insights for improving risk communication and shared decision making by moving beyond symptom-focused information to incorporate patients' lived experiences.
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