Listening to Children’s Voices: Psychosocial and Behavioral Experiences and Identity-Related Changes During the Cancer Trajectory

Objective:This study aimed to explore the psychosocial and behavioral experiences of children undergoing cancer treatment, as well as their perceived identity-related changes, including changes in roles, social relationships, and self-perception. Methods:This phenomenologically informed qualitative study used thematic analysis. Purposive sampling was used to recruit 12 children diagnosed with brain tumors or leukemia from pediatric oncology units at three medical centers in northern Taiwan. Data were collected through in-depth, face-to-face semi-structured interviews. Each interview lasted 30-40 minutes and was conducted in a private setting. All interviews were audio-recorded and transcribed verbatim. Data were analyzed using Braun and Clarke's six-phase thematic analysis within a phenomenological orientation. Results:Four interrelated themes were identified: (1) psychological turmoil, characterized by fear, anxiety, and emotional distress; (2) changes in social interactions and identity-related experiences, including social isolation, peer disconnection, changes in family roles, and shifts in self-perception; (3) disruption of normalcy, involving interruptions in schooling, adjustments to learning, and reduced participation in usual daily activities; and (4) behavioral coping and responses, including overt expressions of distress and more implicit coping strategies such as withdrawal. Conclusions:Understanding these multifaceted experiences provides important insights for family-centered care. Health care professionals should remain attentive to children's psychosocial and behavioral experiences and actively listen to their voices to better understand perceived changes in self-perception, social roles, and identity-related experiences during the cancer trajectory. Tailored supportive interventions may help promote social engagement, preserve a sense of normalcy, and support a positive self-perception throughout cancer treatment.