Chong Agnes Shu Sze, Mahadir Ahmad, Hamidah Alias, Rizuana Iqbal Hussain, Afifi Lateh, Chan Caryn Mei Hsien
Universiti Kebangsaan Malaysia, Center for Community Health Studies (ReaCH), Faculty of Health Sciences, Malaysia.
Faculty of Medicine, UKM Medical Centre, Kuala Lumpur, Malaysia.
Belitung Nurs J. 2022 Jun 28;8(3):204-212. doi: 10.33546/bnj.2083. eCollection 2022.
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.
This study aimed to explore the caregivers' beliefs on children with acute lymphoblastic leukemia caregiving experiences in order to promote their well-being.
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.
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.
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.
癌症是儿童死亡的主要原因之一，最常见的类型是急性淋巴细胞白血病。近年来生存率有所提高；然而，漫长的病程可能会给照顾者带来心理困扰，因为他们在确保孩子基本需求得到满足方面发挥着积极作用。在以患者为中心的医疗体系中，照顾者的需求可能被忽视。
本研究旨在探讨照顾者对急性淋巴细胞白血病患儿护理经历的信念，以促进他们的幸福感。
来自13个急性淋巴细胞白血病患儿家庭的照顾者参与了这项现象学研究。使用NVivo 12对数据进行主题分析。本研究采用了定性研究报告的统一标准（COREQ）。
总体而言，从照顾者的回答中确定了五个主要主题：1）饮食摄入，强调其对康复的重要性及其对癌症并发症的潜在影响；2）儿童护理，强调需要坚强和自我牺牲；3）治疗，反映了家庭疗法或自然疗法的使用以及照顾者对化疗的负面看法；4）认为癌症的病因与早期儿童在食物、饮料和施加给孩子的压力方面的护理选择有关；5）信念来源，包括医生、在线平台、个人经历和食品标签上的信息。
照顾者的信念各不相同且细致入微，是在马来西亚多元文化社会背景下形成的。这些发现为马来西亚背景下未来为患者、其照顾者提供支持性癌症护理以及治疗结果提供了知识。鉴于马来西亚临床心理学家数量不足，且更倾向于由医生或护士提供护理，在医疗专业人员与患者和/或其照顾者之间发挥重要作用的护士可以被赋予权力，提供心理支持、早期发现心理困扰并探索照顾者的信念。
