Exploring the beliefs of caregivers about the caregiving experiences of children with acute lymphoblastic leukemia in Malaysia


psychological distress

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Chong, A. S. S., Mahadir, A., Hamidah, A., Rizuana, I. H., Afifi, L., & Chan, C. M. H. (2022). Exploring the beliefs of caregivers about the caregiving experiences of children with acute lymphoblastic leukemia in Malaysia. Belitung Nursing Journal, 8(3), 204–212. https://doi.org/10.33546/bnj.2083
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Accepted for publication: 2022-05-19
Peer reviewed: Yes

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Background: Cancer is one of the major leading causes of childhood death, and the most common type is acute lymphoblastic leukemia. The survival rate has increased in recent years; however, the long patient trajectory may trigger psychological distress among caregivers as they play an active role in ensuring that the child’s basic needs are met. Being in a patient-focused system, the needs of caregivers may be neglected.

Objective: This study aimed to explore the caregivers' beliefs on children with acute lymphoblastic leukemia caregiving experiences in order to promote their well-being.

Methods: Caregivers from thirteen families of children with acute lymphoblastic leukemia participated in this phenomenological study. NVivo 12 was used for the thematic analysis of the data. Consolidated criteria for reporting qualitative research (COREQ) were used in this study.

Results: Overall, five main themes for caregivers’ beliefs were identified from their responses: 1) dietary intake with emphasis on its importance in aiding recovery and its potential influence on cancer complications, 2) childcare which emphasized the need to be strong and self-sacrifice, 3) treatment which reflected the use of home or natural remedies and caregivers’ negative perception towards chemotherapy, 4) causes of cancer believed to be linked to early childcare choices on food, beverage, and stress imposed on the child, and  5) source of beliefs that included doctors, online platforms, personal encounters and information on food labels.

Conclusion: Caregivers’ beliefs are varied and nuanced, formed in a multicultural social background of Malaysia. These findings provide knowledge for future supportive cancer care for patients, their caregivers, and the treatment outcome in the Malaysian context. Nurses, who play an essential role between healthcare professionals and patients and/or their caregivers, can be empowered to provide psychological support, early detection of psychological distress, and exploration of caregiver beliefs, given that the number of clinical psychologists in Malaysia is lacking, and there is greater preference for care to be provided by doctors or nurses.

Supporting Agencies

Research Distribution Fund, Universiti Kebangsaan Malaysia (TAP-K012172)


Copyright (c) 2022 Agnes Shu Sze Chong, Ahmad Mahadir, Alias Hamidah, Iqbal Hussain Rizuana, Lateh Afifi, Caryn Mei Hsien Chan

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This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

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Declaration of Conflicting Interest

The authors declare that there is no known conflict of interest.


Special thanks to the participants in this study and staff members of the participating hospital for their kind assistance in the success of this study.

Authors’ Contributions

ASSC, AM, and CMHC conceived and designed the study. HA facilitated the participants’ recruitment while AC performed the qualitative study with guidance from AM, CMHC, AH, IHR, and LA. ASSC analyzed the results with close guidance and cross-checking with CHMC as an expert in psychosocial oncology involving qualitative methods, MA as an expert in health psychology, HA as an expert in the field of pediatric oncology, and RIH as an expert in the field of radiology. ASSC wrote the manuscript draft, while all authors discussed the results and were responsible for the critical revision of the manuscript. All authors have read and approved the final manuscript.

Data Availability

Data sharing (of the interview transcript) is not applicable to this article. However, the themes generated from the qualitative interview are included in this article.


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