Publication: Exploring the experiences and inner strengths of caregivers of children with leukemia in Malaysia: a qualitative study
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Date
2025
Authors
Huei, Haw Ying
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Abstract
Childhood leukemia presents not only a significant health challenge for young patients but also imposes a profound caregiving burden on their families. In Malaysia, where leukemia accounts for the highest childhood cancer mortality rate, there is a critical lack of qualitative research exploring the lived experiences and psychological resources of caregivers. This study aimed to explore the experiences and inner strengths of caregivers of children with leukemia in Malaysia. It sought to understand the multifaceted challenges they face and the coping mechanisms they utilize, filling a major gap in existing literature. A qualitative research design with a phenomenological approach was employed to gain in-depth insights into caregivers’ lived experiences. Data were collected from 10 primary caregivers through semi-structured, in-depth interviews conducted online. Interpretative Phenomenological Analysis (IPA) was performed with the aid of Atlas.Ti software, and the identified themes were validated by one expert in the field to ensure credibility and trustworthiness. Findings revealed five experiential themes, which include emotional turmoil, social challenges, family and role conflict, work commitment challenges, and financial burden. Despite these challenges, caregivers exhibited four key inner strengths, which include positive appraisal, spirituality, resilience, and personal growth. Many caregivers reframed their experiences positively, found strength in religious beliefs, utilized support systems, and developed a deeper appreciation for life. This study offers a holistic understanding of the caregiving experience in the context of paediatric leukemia in Malaysia. The findings highlight the dual nature of caregiving, which is marked by emotional and practical struggles, yet also by the emergence of psychological resilience and growth. These insights can inform the development of culturally sensitive interventions, such as psychosocial support programs, caregiver education, and resilience training. Ultimately, this study contributes to a strengths-based framework for supporting caregivers and enhancing the well-being of families affected by childhood leukemia in Malaysia.
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Keywords
caregivers , childhood leukemia