Presentation Information
[kNAyHR2S-04]“From Shock to Learning to Live with Uncertainty”:A Qualitative Exploration of Caregivers’ Emotional and Cognitive Adaptation to a Child’s Leukemia Diagnosis
*Xiaowan Li1,2,3, Sanmei Chen1, Yishuang Yang2,3, Hua Wei2,3, Qiurong Chen2,3, Jingjing Ma2,3, Feng Lu2,3, Yoko Shimpuku1 (1. Hiroshima university (Japan), 2. West China Second University Hospital (China), 3. Key Laboratory of Birth Defects and Related Diseases of Women and Children (Sichuan University) (China))
Keywords:
Acute lymphoblastic leukemia,Illness uncertainty,Caregiving preparedness,Support
[Purpose]This study aimed to explore the emotional and cognitive experiences of caregivers following a child’s acute lymphoblastic leukemia (ALL) diagnosis and to understand how they gradually adapt to caregiving roles during the early treatment phase.
[Method]Semi-structured interviews were conducted with 17 caregivers of children newly diagnosed with ALL at West China Second Hospital between March 2024 and January 2025. Data were analyzed inductively using Braun and Clarke’s six-phase thematic analysis. Ethical approval was obtained from the West China Second Hospital Ethics Committee (YXKY2024006), and all participants provided written informed consent.
[Results]Four themes were identified: (1) emotional and cognitive disruption after diagnosis, including overwhelming emotional responses, heightened threat perception, existential fear, and gaps in illness-related information; (2) living with ongoing illness uncertainty, characterized by persistent anxiety, vigilance regarding infection or relapse, and continuous information seeking; (3) reconstructing meaning and rebuilding control, involving reassurance from clear medical information, trust in healthcare professionals, perceived external and financial burdens, and family role shifts, often with career sacrifice; and (4) ongoing adaptation under residual uncertainty, marked by acceptance of uncertainty and continued needs for care continuity and follow-up.
[Consideration]The findings highlight caregiving preparedness as a gradual and adaptive process shaped by emotional adjustment, information acquisition, and trust in healthcare professionals during early treatment.
[Conclusion]Caregivers of children newly diagnosed with ALL experience an early adjustment period marked by emotional distress, ongoing uncertainty, and evolving caregiving roles. Early supportive interventions should emphasize clear information, emotional support, and smooth transitions from hospital to home.
[Method]Semi-structured interviews were conducted with 17 caregivers of children newly diagnosed with ALL at West China Second Hospital between March 2024 and January 2025. Data were analyzed inductively using Braun and Clarke’s six-phase thematic analysis. Ethical approval was obtained from the West China Second Hospital Ethics Committee (YXKY2024006), and all participants provided written informed consent.
[Results]Four themes were identified: (1) emotional and cognitive disruption after diagnosis, including overwhelming emotional responses, heightened threat perception, existential fear, and gaps in illness-related information; (2) living with ongoing illness uncertainty, characterized by persistent anxiety, vigilance regarding infection or relapse, and continuous information seeking; (3) reconstructing meaning and rebuilding control, involving reassurance from clear medical information, trust in healthcare professionals, perceived external and financial burdens, and family role shifts, often with career sacrifice; and (4) ongoing adaptation under residual uncertainty, marked by acceptance of uncertainty and continued needs for care continuity and follow-up.
[Consideration]The findings highlight caregiving preparedness as a gradual and adaptive process shaped by emotional adjustment, information acquisition, and trust in healthcare professionals during early treatment.
[Conclusion]Caregivers of children newly diagnosed with ALL experience an early adjustment period marked by emotional distress, ongoing uncertainty, and evolving caregiving roles. Early supportive interventions should emphasize clear information, emotional support, and smooth transitions from hospital to home.
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