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Uncovering the Life Experiences Being Fathers of Children With Cerebral Palsy.
J Spec Pediatr Nurs
January 2025
Faculty of Health Sciences, Nursing Department, Universitas Muhammadiyah Surabaya, Surabaya, Indonesia.
Purpose: This research aims to uncover the life experiences of fathers of children with Cerebral Palsy (CP) in Indonesia.
Design And Methods: This study utilized a descriptive phenomenological approach. Nine fathers of young children and adolescents with CP were purposively recruited and were interviewed in-depth between June and August 2023.
Navigating the Institutional Review Board and other institutional entities: An ode to aspiring YPAR scholars.
Am J Community Psychol
December 2024
Institutional Review Board, Boston University, Boston, Massachusetts, USA.
Youth-led participatory action research (YPAR) engages young people as partners in rigorous research inquiry to guide and inform collective action. Scholars interested in YPAR have notable investment in social justice and activist values, which at times come in direct tensions within their doctoral training and/or professional roles within academia. One monumental hurdle in conducting YPAR is obtaining approval from the Institutional Review Board (IRB).
View Article and Find Full Text PDFThe COVID-19 pandemic and asthma management: A family caregiver perspective.
J Asthma
December 2024
Department of Pediatrics, Albert Einstein College of Medicine, Children's Hospital at Montefiore, Bronx, NY, United States.
Objective: Previously the epicenter of the COVID-19 pandemic in New York, the Bronx has one of the highest prevalence rates of pediatric asthma in the United States. Pandemic mitigation efforts altered asthma management practices in at-home and clinical settings. We were interested in identifying family caregiver-reported barriers to asthma management during the COVID-19 pandemic to optimize care for Bronx children with asthma.
View Article and Find Full Text PDFTransforming Family Medicine Research: Strategic Planning, Summits, and a Special Issue.
J Am Board Fam Med
December 2024
From the Family and Community Medicine, The University of Alabama at Birmingham Heersink School of Medicine, Birmingham, AL (IA); Family Medicine, Oregon Health & Science University, Portland, OR (SE); Family Medicine, University of Washington, Seattle, WA (AW); and Association of Departments of Family Medicine, Leawood, KS (SE, AW).
A standardised measurement and valuation scale of genomic utility for policy decisions: the GUV-scale.
Value Health
December 2024
Australian Genomics, Melbourne, Australia; Victorian Clinical Genetics Services, Murdoch Children's Research Institute, Melbourne, Australia; Department of Paediatrics, University of Melbourne, Melbourne, Australia.
Objectives: The multifaceted ways in which genomics can be valuable to clinicians, patients, families, and society are important for informing prioritisation decisions by policy makers. This study aims to develop a standardised, cumulative and preference-weighted Genomic Utility Valuation (GUV) on a scale 0-100%.
Methods: A multicriteria decision analysis (MCDA) was conducted with experts involved in policy, clinical, research, and consumer advocacy leadership in Australia for the valuation of policy priority indicators of genomic utility.
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