METHODS: A user profile and topic list were established based on previous needs analysis studies. Content was developed for each identified topic. An expert panel assessed the content validity of both informational content and activity sections. Subsequently, the contents were presented via a learning management system to parents of children newly diagnosed with leukemia or lymphoma. Parents evaluated the quality of e-HOPE using the Website Evaluation Questionnaire (WEQ) after an 8-week period.
RESULTS: The scale content validity index (S-CVI/Ave) achieved 0.996 for informational content and 0.991 for the activity section. Sixteen parents provided evaluations of e-HOPE after an 8-week usage period. Mean WEQ scores for various dimensions ranged from 4.23 for completeness to 4.88 for relevance.
CONCLUSIONS: E-HOPE was meticulously designed and developed to offer Malaysian parents a Malay-language resource complementing current caregiver education practices. It exhibited strong content validity and received positive user ratings for quality. Further assessment is warranted to evaluate its effectiveness in supporting parents of children with leukemia or lymphoma. The resource is anticipated to enhance information accessibility and support for Malaysian parents facing hematological cancers in their children.
TRIAL REGISTRATION: Clinicaltrials.govNCT05455268.
METHODS: This study included 1740 males (1146 Chinese, 327 Malays and 267 Asian Indians) and 1950 females (1329 Chinese, 360 Malays and 261 Asian Indians) with complete data on anthropometric indices, fasting lipids, smoking status, alcohol consumption, exercise frequency and genotype at the APOE locus.
RESULTS: Malays and Asian Indians were more obese compared with the Chinese. Smoking was uncommon in all females but Malay males had significantly higher prevalence of smokers. Malays had the highest LDL-C whilst Indians had the lowest HDL-C, The epsilon 3 allele was the most frequent allele in all three ethnic groups. Malays had the highest frequency of epsilon 4 (0.180 and 0.152) compared with Chinese (0.085 and 0.087) and Indians (0.108 and 0.075) in males and females, respectively. The epsilon 2 allele was the least common in Asian Indians. Total cholesterol (TC) and LDL-C was highest in epsilon 4 carriers and lowest in epsilon 2 carriers. The reverse was seen in HDL-C with the highest levels seen in epsilon 2 subjects. The association between ethnic group and HDL-C differed according to APOE genotype and gender. Asian Indians had the lowest HDL-C for each APOE genotype except in Asian Indian males with epsilon 2, where HDL-C concentrations were intermediate between Chinese and Malays.
CONCLUSION: Ethnic differences in lipid profile could be explained in part by the higher prevalence of epsilon 4 in the Malays. Ethnicity may influence the association between APOE genotypes and HDL-C. APOE genotype showed no correlation with HDL-C in Malay males whereas the association in Asian Indians was particularly marked. Further studies of interactions between genes and environmental factors will contribute to the understanding of differences of coronary risk amongst ethnic groups.
METHODS: The HomeSat subscale of the Dutch SASC-19 questionnaire (11 items) underwent back-to-back translation to produce a Malay language version. Content validation was done by Family Medicine Specialists involved in community post-stroke care. Community social support services in the original questionnaire were substituted with equivalent local services to ensure contextual relevance. Internal consistency reliability was determined using Cronbach alpha. Exploratory factor analysis was done to validate the factor structure of the Malay version of the questionnaire (SASC10-My™). The SASC10-My™ was then tested on 175 post-stroke patients who were recruited at ten public primary care healthcentres across Peninsular Malaysia, in a trial-within a trial study.
RESULTS: One item from the original Dutch SASC19 (HomeSat) was dropped. Internal consistency for remaining 10 items was high (Cronbach alpha 0.830). Exploratory factor analysis showed the SASC10-My™ had 2 factors: discharge transition and social support services after discharge. The mean total score for SASC10-My™ was 10.74 (SD 7.33). Overall, only 18.2% were satisfied with outpatient stroke care services (SASC10-My™ score ≥ 20). Detailed analysis revealed only 10.9% of respondents were satisfied with discharge transition services, while only 40.9% were satisfied with support services after discharge.
CONCLUSIONS: The SASC10-My™ questionnaire is a reliable and valid tool to measure caregiver or patient satisfaction with outpatient stroke care services in the Malaysian healthcare setting. Studies linking discharge protocol patterns and satisfaction with outpatient stroke care services should be conducted to improve care delivery and longer-term outcomes.
TRIAL REGISTRATION: No.: ACTRN12616001322426 (Registration Date: 21st September 2016.
OBJECTIVES: This article aims to explain paediatric cancer parents' information behaviour related to the care of their child.
METHODS: Qualitative in-depth interviews were conducted with fourteen Malaysian paediatric cancer parents and eight healthcare professionals who worked with paediatric cancer patients. Reflexivity and inductive approaches were used to interpret the data to identify meaningful themes and subthemes.
RESULTS: Three themes about how paediatric cancer parents interact with information emerged: Acquiring information, internalising information, and using information. Information may be actively sought or passively acquired. Cognitive and affective aspects influence how information is internalised into meaningful knowledge. Knowledge then leads to further action including further information gathering.
CONCLUSION: Paediatric cancer parents need health literacy support to meet their information needs. They require guidance in identifying and appraising suitable information resources. Development of suitable supporting materials is needed to facilitate parents' ability to comprehend information related to their child's cancer. Understanding parents' information behaviour could assist healthcare professionals in providing information support in the context of paediatric cancer.
Methods: Back-to-back translation was used to produce a bilingual version of the questionnaire. Hand drawings were used to replace photographs from the original questionnaire. Face validity and content validity were assessed, and construct validity was determined by comparing responses from informal caregivers, medical students, and primary care doctors. Finally, the internal consistencies of the subscales were determined.
Results: Pretesting showed that the translated version was sufficiently easy to understand. Internal consistency for the positioning subscale (28 items, Cronbach's α = 0.70) and feeding subscale (15 items, Cronbach's α = 0.70) was good. Mean scores for the positioning subscale for caregivers (mean: 17.1 ± 3.9), medical students (mean: 18.9 ± 3.1), and doctors (mean 21.5 ± 2.2) were significantly different (F = 5.28, P ' = 0.011). Mean scores for the feeding subscale for caregivers (mean 13.1 ± 2.5), medical students (mean 16.1 ± 1.9), and doctors (mean 16.1 ± 2.4) also differed significantly (F = 6.217, P = 0.006).
Conclusions: CKQ-My has good internal consistency and construct validity for the subscales measuring stroke caregivers' knowledge about positioning and feeding of stroke patients. It has potential as an assessment of effectiveness of caregiver training and for future studies on long-term stroke outcomes in Malaysia.