‘Between Inner Strength and Fighting Prejudice’: Psycho-Social Processes Implemented by Women with Leukemia Along the Illness Trajectory: A Grounded Theory Study

Abstract

Background: Disease trajectories in leukemia are often unpredictable and recurrent, and patients’ experiences can impact their quality of life. Studies in the literature often do not explore gender-related illness experiences from an intersectional approach and throughout the illness trajectory. This comprehensive study aims to explore the full spectrum of experiences lived by women with leukemia throughout the disease trajectory, from diagnosis to treatments and post-stem cell transplant follow-up. Method: A grounded theory approach was meticulously developed to analyze semi-structured interviews with 13 women with leukemia in the post-transplant follow-up phase at a hospital in Northern Italy. The data analysis was an iterative process, conducted concurrently using a constant comparative method. Data collection concluded when data saturation was reached. Results: The core category identified is women’s inner strength during the disease trajectory, which was identified for its recurrence and cross-cutting nature, according to the women. This core category interconnects with five main categories: 1. Facing the disease: Between resistance and surrender. 2. Living for today and moving forward. 3. Unexpected elements in relationships. 4. Changes that shape women. 5. Demystifying the body and embracing ‘diminished beauty’. Conclusions: An explanatory model of the disease trajectory of women with leukemia was defined as: ‘Women with leukemia, between inner strength and fighting prejudice’. An in-depth analysis of the disease experiences revealed aspects that are not easily understood through a purely biological perspective of gender differences, often overlooking the psycho-social and relational peculiarities of women.

Keywords

• leukemia
• women
• gender medicine
• illness trajectory
• women’s perceptions
• psycho-social process