METHODS: A cross-sectional HRQoL survey of Malaysian children with TDT was conducted using the PedsQL™ 4.0 Generic Core Scales. Patients with non-transfusion dependent thalassemia and other haemoglobinopathies were excluded. Parent-proxy and self-reported HRQoL scores were obtained using a multi-stage convenient sampling. The relationship between HRQoL scores and demographic factors were tested using association, correlation and regression analysis.
RESULTS: A total of 368 patients were recruited. The mean (SD) Total Summary Score (TSS) was 80.12(13.87). Predictors for a lower TSS was an increasing age group and the use of dual chelating agents (R2 = 0.057, F (4, 359) = 5.40, p =
METHODS: A cross-sectional study was conducted among randomly selected group of 450 parents using a self-administered questionnaire. Optimum utilization of the book was defined as respondents reading all sections and recording comments in the book. Independent variables studied were sociodemographic characteristics; antenatal and breastfeeding history; child health and immunization status; perceptions and level of knowledge on the book and child health; and healthcare providers' performance. A multiple logistic regression analysis was used to identify the associated factors of optimum utilization.
RESULTS: Out of 450 study participants, 415 completed the questionnaire and 150 (36.1%) were found to optimally utilized the book. Participants who read all sections totalled 245 (59.0%), and 242 (58.3%) respondents reported to record some comments in the book. Optimum utilization of the book was associated with older parents' age (adjusted odds ratio [AOR]: 1.06, 95% confidence interval [CI] 1.01-1.11) and higher education attainment (AOR: 2.21, 95% CI 1.24-3.91), with a good level of knowledge on child health record books and general child health (AOR: 3.87, 95% CI 2.27-6.61; AOR: 2.05, 95% CI 1.25-3.36) and among parents who delivered their children in government hospitals (AOR: 2.93, 95% CI 1.11-7.73).
CONCLUSIONS: The prevalence of child health record book utilization was low at 36.1% but difficult to compare with other studies. Based on the findings, improving the parents' knowledge of the book and general child health, particularly among younger parents with lower educational levels, and delivering the book to institutions outside government hospitals might be useful to increase the utilization.
METHODS: This qualitative study interviewed 12 Malaysian parents and 10 Malaysian teachers comprising of Malay (82%), Chinese (9%) and Indian (9%) races in an online focus group discussion. Sampling is purposive to parents of adolescents and teachers at secondary school only. Data were analyzed thematically to determine the culturally sensitive SEL constructs for Malaysian adolescents.
RESULTS: All themes and sub-themes of SEC regarded as crucial for Malaysian adolescents are aligned with CASEL's five domains of competencies. Our findings extended the conceptualization of subskills under CASEL's relationship skills and responsible decision-making domains, which reflect Asian cultural values. The main themes of social competency: (a) preserving interpersonal relationships, (b) utilizing intrapersonal skills, and (c) communicating effectively, are shared with the established CASEL constructs. However, the underlying subthemes denote the unique cultural manifestation of social competency in Malaysia. Two of the emotional competency themes represent the established CASEL constructs: (a) practicing self-regulation, (b) demonstrating help-seeking behavior, and the other two themes signify Asian values: (c) upholding altruism, and (d) maintaining cultural display rules.
DISCUSSIONS: This formative study revealed the habitual use of experiential and expressive suppressions as adaptive emotion regulation strategies in Malaysian collectivist culture and offered a potential alternative emotion regulation pathway suitable for Malaysian adolescents. It also informed the feasibility of implementing SEL modules developed based on the CASEL framework in Malaysia and suggested two key lessons to enhance the cultural sensitivity of SEL in Malaysia: effective, respectful communication and expressive writing.
AIM: The study aimed to understand the experiences of parents of children with thalassemia related to their family, financial, social, treatment, and psychological issues in Pakistan.
METHODS: This descriptive phenomenological study recruited 21 parents of children with thalassemia through purposive sampling until data saturation was achieved. Analysis of transcribed interviews was performed through Colaizzi's method and themes and subthemes revolving around diagnosis, challenges, and treatment issues were extracted.
FINDINGS: A total of 21 Pakistani parents participated in this study. Most of the participants were females (n = 16, 76.19%), housewives/stay-at-home moms (n = 13 (61.90%), and were uneducated (n = 6, 28.57%). Regarding genetic traits, only three (14.28%) parents declared that they had genetic traits of thalassemia. The findings of our study revealed that thalassemia is enormously influenced by psychosocial and economic problems because of this disease in their families.
CONCLUSION: Our findings indicated that parents of these children face multi-faceted challenges, such as physical, socio-emotional, financial, and familial. These findings may lead to an adequate understanding of their individual needs and efficient utilization of supportive and care programs.
PRACTICE IMPLICATIONS: An understanding of such experiences, involving those distinctive to Pakistani culture, is especially vital to inform the care of these children and enhance their quality of life.
METHODS: This cross-sectional study recruited 553 parents of children aged 13-24 years in low-income community settings. The Parent-Child Conflict scale of the Parental Environment Questionnaire (PEQ) was used to measure parent-child conflict. Psychological distress was assessed using the Depression, Anxiety, and Stress Scale short form (DASS-21).
RESULTS: The study revealed a low level of parent-child conflict in the overall study population, with a median PEQ of 48.0 (interquartile range [IQR] 36 to 48). Concerning demographics, married parents reported a likelihood of having a higher level of parent-child conflict over 3 times higher than single parents (OR = 3.18 95%, CI 1.30-7.75). More parent-child conflicts were also found in parents aged 60-72 years old who were unemployed, retired, or housewives and from lower-income groups. In regard to lifestyle factors, a higher level of physical activity and having enough sleep were associated with lower levels of parent-child conflict. Only approximately 1% of the participants reported symptoms of depression, anxiety, or stress.
DISCUSSION: Low risk exists for parent-child conflict and psychological sequelae following the easing of the COVID-19 pandemic restrictions, which could be due to various support measures implemented by the government. Vulnerable parents identified as being at risk of parent-child conflict warrant attention in future advocacy efforts.
Case Report: We report two cases with atypical clinical presentation of ectopic thymus and superior herniation of normal thymus. Both of the patients manifested as intermittent midline mass at the suprasternal region during Valsalva manuevre. Unique ultrasound features with the location along the thymic descent together with dynamic assessment of the organ movement were essential to reach the correct diagnosis. Conservative approach was considered in these patients considering the necessity of thymus in the process of puberty.
Conclusion: High index of suspicion is of utmost importance when encounter patient with similar clinical manifestation to avoid unnecessary diagnostic modalities and surgeries. Accurate diagnosis will also alleviate parents' anxiety.
METHOD: Papers were identified through five electronic databases based on 15 keywords and were included if they met the following criteria: published in English, described the implementation of parent-report instruments, and included children with neurological impairments (either in the report or a related study population).
RESULTS: In total, 1220 relevant abstracts were screened and 22 full-text articles were evaluated. The following six parent-report instruments met the inclusion criteria: (1) Screening Tool of Feeding Problems applied to children, (2) Paediatric Eating Assessment Tool, (3) Paediatric Assessment Scale for Severe Feeding Problems, (4) Montreal Children's Hospital Feeding Scale, (5) Children's Eating Behaviour Inventory, and (6) Behavioural Paediatric Feeding Assessment Scale (BPFAS). Based on comprehensive psychometric testing and consistently good results, the BPFAS was considered the most valid and reliable instrument. The BPFAS also showed good clinical applicability because it was readily available, required a short administration time, and used a simple scoring system.
INTERPRETATION: We reviewed the available parent-report instruments for assessing feeding difficulties in children with neurological impairments. The BPFAS had the best psychometric properties and clinical applicability.
WHAT THIS PAPER ADDS: Six parent-report instruments were suitable for assessing feeding in children with neurological impairments. The Behavioural Paediatric Feeding Assessment Scale (BPFAS) has the strongest psychometric properties. The BPFAS also has good clinical applicability.