Navigating the emotional landscape: exploring caregivers’ journey alongside breast cancer survivors with chronic pain

Abstract

Purpose Caregiving is a crucial but frequently overlooked part of cancer care, as well as the main emotions experienced by caregivers during that journey. This qualitative study aimed to explore the emotional landscape of informal caregivers in supporting breast cancer survivors (BCs) living with chronic pain (CP). Methods We conducted 3 focus groups with informal caregivers of BCs with CP. For the sentiment analysis, we used R Software and the NRC Emotion Lexicon following Plutchik’s theoretical framework of emotions. The emotion spectrum was visualized using the “PyPlutchik” package in Python. Results Caregivers (M age = 43.17, SD = 10.97) predominantly experienced negative emotions ( n = 65; M = 0.06, SD = 0.25) compared to positive ones ( n = 37; M = 0.10, SD = 0.31), with sadness ( n = 46), fear ( n = 43), and disgust ( n = 37) being most common, alongside feelings of remorse ( n = 37), despair ( n = 41), and shame ( n = 37). The COVID-19 pandemic, as reported by caregivers, also intensified feelings of shame, frozenness, and ambivalence. Despite more frequent negative sentiments, trust ( n = 53) and hope ( n = 24) were consistently expressed, indicating a complex emotional landscape where positive and negative feelings coexist. Discussion This study identifies the broad spectrum of emotions experienced by caregivers in the context of BCs with CP, ranging from individualistic feelings (e.g., fear, despair) to social emotions (e.g., shame, frozenness), and even includes instances of positive emotions (e.g., trust, hope). While our study highlights the emotional toll on caregivers, we suggest that future research and interventions focus more on providing effective support frameworks to manage these emotional challenges. Any discussion regarding the specific impacts of these emotional experiences on clinical outcomes (e.g., quality of life, fear of cancer recurrence) should be approached with caution. Supplementary Information The online version contains supplementary material available at 10.1007/s00520-024-09064-3.