Objective: Malaysian parents of children diagnosed with leukemia or lymphoma stand to benefit from a comprehensive Malay-language online resource, complementing existing caregiver education practices. This study aimed to develop and assess the efficacy of e-Hematological Oncology Parents Education (e-HOPE), an online caregiver education resource in Malay, designed to enhance the knowledge of parents with children diagnosed with leukemia or lymphoma in Malaysia.
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.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC10831254 | PMC |
http://dx.doi.org/10.1016/j.apjon.2023.100363 | DOI Listing |
Because of the lengthening of their life-expectancy, more people with cystic fibrosis (CF) now pursue parenthood. To explore the experience of parenting while having CF, 18 French parents with CF were interviewed (including 12 mothers and 9 participants with a lung transplant). A thematic analysis of the interview transcripts was conducted.
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Centre for Adolescent Health, Murdoch Children's Research Institute and Royal Children's Hospital, Parkville, Victoria, Australia.
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Medical Research Council Research Unit for Hypertension and Cardiovascular Disease, North-West University, Potchefstroom, South Africa.
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Autism Res
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Department of Allied Health Sciences, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Echolalia, the immediate or delayed repetition of speech, is a core diagnostic criterion for autism spectrum disorder. It has been studied for over 50 years and is well-described; however, no consensus on prevalence estimates exists for echolalia's occurrence in autistic youth. The current study sought to (1) describe endorsement of echolalia-related items using parent-, teacher-, and clinician-reports in a well-validated sample of autistic youth and (2) characterize relations between echolalia and other key factors, including age, language ability, and repetitive behaviors.
View Article and Find Full Text PDFRasopathies, including Noonan Syndrome (NS) and Neurofibromatosis type 1 (NF1), are developmental disorders caused by germline mutations in genes of the RAS/mitogen-activated protein kinase pathway (RAS-MAPK). This study investigates irritability, a highly prevalent transdiagnostic construct, in children with Rasopathies and the impact of Rasopathy status on the associations between irritability, emotional dysregulation-related disorders, and social skills impairments. The sample comprise 174 children aged 4-17 (age mean = 9.
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