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

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.

Parental reports of behavioural outcome among paediatric leukaemia survivors in Malaysia: a single institution experience.

OBJECTIVES: To determine the behavioural impact of chemotherapy in survivors of acute lymphoblastic leukaemia (ALL) treated with chemotherapy only and to identify treatment-related or sociodemography-related factors that might be associated with behavioural outcome. METHODS: We examined 57 survivors of childhood ALL, who were off treatment for at least 2 years and were in remission, aged 4-18 years, and 221 unrelated healthy controls. The Child Behaviour Checklist (CBCL) parent report was used either in English or in Bahasa Malaysia (the national language of Malaysia) to assess the behavioural outcome. RESULTS: Childhood ALL survivors had significantly higher scores on externalising behaviour on the CBCL parent report than did controls. Higher problem scores were found in ALL survivors with single parents on 'total problems' (P = 0.03) and subscales 'withdrawn' (P = 0.03), 'social problems' (P < 0.01) and 'delinquent behaviour' (P = 0.03) than in survivors with married parents. Significant associations were seen between a lower education level of the father and the variables representing internalising (withdrawn, anxious/depressed) and externalising (aggressive behaviour). We observed trends on higher scores in all scales in ALL survivors with single parents than in controls with single parents or with fathers with low education level, especially primary education only. CONCLUSIONS: Malaysian childhood ALL survivors had a significantly increased risk for externalising behavioural problems, and there was a trend towards increased risk of problems in many other behavioural scales. Understanding the sociocultural dimension of patients' health is important to be able to design the most appropriate remedy for problem behaviours detected in this multi-ethnic population.

Physical activity of pediatric patients with acute leukemia undergoing induction or consolidation chemotherapy.

This study aimed to assess the physical activity levels of pediatric patients with acute leukemia undergoing chemotherapy. Thirty-eight pediatric patients and matched controls, aged 3-12 years old, were measured for weight, height, and other anthropometric parameters. Physical activity was assessed using actical accelerometer and activity log book. Patients recorded significantly lower mean total activity counts (26.2±30.2 cpm vs. 192.2±68.8 cpm; p<0.01) and spent more time in sedentary activities (1301±121 min vs. 1020±101 min; p<0.001) compared to controls. They also achieved fewer 1-5-min bouts of moderate-vigorous physical activity (MVPA) compared to controls (1.50±5.95 vs. 37.38±40.36; p<0.001). In conclusion, patients had lower physical activity level and intensity; and simple exercise intervention programs may be needed to minimize the detrimental effects of prolonged sedentary behaviors.

Health-related quality of life (HRQOL) among pediatric leukemia patients in Malaysia.

BACKGROUND: Health-Related Quality of Life (HRQOL) in pediatric leukemia patients in Malaysia has not been studied before. This was mainly due to a lack of databases on patients in the past. Many patients abandoned treatment or were lost to follow up. With more children now fully compliant and completing treatment nowadays, with higher cure rate, HRQOL has become important for our patients. The purpose of the current study was to determine the HRQOL scores in children with acute leukemia and to compare the scores for those on maintenance chemotherapy with those off-treatment as well as to determine factors which might affect HRQOL. METHODS: Seventy-seven children in a pediatric oncology center in Kuala Lumpur, Malaysia diagnosed with acute leukemia were consecutively enrolled, of whom 22 were on maintenance chemotherapy and 55 off-treatment. The Pediatric Quality of Life Inventory (PedsQL™) Scales were used to assess HRQOL. RESULTS: Children on maintenance chemotherapy had significantly lower child self-report HRQOL scores across all domains (P < 0.001) especially psychosocial health compared with those who were off-treatment. Also, parents with children on maintenance chemotherapy reported significantly lower HRQOL scores across all domains (P < 0.05) except social functioning compared with parents with children off-treatment. Younger child age was associated with lower parent proxy-report total score (P = 0.007) CONCLUSIONS: Pediatric acute leukemia patients on maintenance chemotherapy experienced significantly poorer HRQOL compared to those off-treatment.

Prevalence and parental perceptions of complementary and alternative medicine use by children with cancer in a multi-ethnic Southeast Asian population.

BACKGROUND: The purpose of the current study was to determine the prevalence of use of complementary and alternative medicine (CAM) by children with cancer and to compare the characteristics of CAM users and CAM nonusers. METHODS: A cross-sectional study was performed at a pediatric oncology center in Kuala Lumpur, Malaysia. The parents of 97 children with cancer were interviewed using a structured questionnaire. RESULTS: Overall, 84.5% of the respondents had used CAM, and most of them believed that CAM provided a boost to the immune system, and used CAM with the intention to complement conventional treatment. The most frequently used CAM was water therapy (78%), followed by spirulina (33%), vitamin C (27%), multivitamin (23%), visit to traditional healers (22%), sea cucumber (Stichopus horrens) (15%), and Chinese traditional medicine (12%). The Malay (n = 67) were using more often (93%) CAM than non-Malay (n = 30, use 67%, P = 0.001). CONCLUSIONS: CAM use is common among Malaysian children with cancer. Understanding the sociocultural dimension of patients' health beliefs is important to a successful treatment, and pediatric oncologists should ask for the use of CAM.