Results 31 to 40 of about 203,179 (264)

Experiences, impact, and enablers of involving young people and family caregivers in developing reporting guidelines for paediatric randomised trials: a case study

Research Involvement and Engagement
Background Patient and public involvement (PPI) is increasingly recognized as important, yet no guidance exists on integrating young people and family caregiver perspectives in the development of research reporting guidelines. We developed two paediatric-
Ami Baba, Maureen Smith, Jennifer Preston, Begonya Nafria Escalera, Segolene Gaillard, Pamela Dicks, Matthew Prebeg, Amanda Doherty-Kirby, Kimberly Courtney, Lynn Mendonza, Tanya Chute Nagy, Lotty Hooft, Martin Offringa   +12 more
doaj   +1 more source

Early Impact of Childhood Opportunity on Neurocognitive Outcomes in Sickle Cell Disease

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Introduction Neurocognitive impairment is a well‐recognized complication of sickle cell disease (SCD) that begins early in childhood and persists across development. While cerebrovascular injury contributes substantially to risk, neurocognitive deficits are also observed in children without overt or silent cerebral infarctions, suggesting ...
Julia E. LaMotte, Hannah Koch, Olivia A. Coughlin, Jillian R. Bouck, Allie Carter, Seethal A. Jacob   +5 more
wiley   +1 more source

Establishing a core outcome set for creatine transporter deficiency and guanidinoacetate methyltransferase deficiency

Orphanet Journal of Rare Diseases
Background Creatine transporter (CTD) and guanidinoacetate methyltransferase (GAMT) deficiencies are rare inborn errors of creatine metabolism, resulting in cerebral creatine deficiency.
Zahra Nasseri Moghaddam, Emily K. Reinhardt, Audrey Thurm, Beth K. Potter, Maureen Smith, Celeste Graham, Beth H. Tiller, Steven A. Baker, Deborah A. Bilder, Regina Bogar, Jacobus Britz, Rachel Cafferty, Daniel P. Coller, Ton J. DeGrauw, Vicky Hall, Gerald S. Lipshutz, Nicola Longo, Saadet Mercimek-Andrews, Judith S. Miller, Marzia Pasquali, Gajja S. Salomons, Andreas Schulze, Celine P. Wheaton, Kayla F. Williams, Sarah P. Young, Jasmine Li, Sofia Balog, Theresa Selucky, Sylvia Stöckler-Ipsiroglu, Heidi Wallis   +29 more
doaj   +1 more source

BMT4me En Español: Multisite Feasibility and Usability Testing of a Spanish‐Language mHealth Adherence Support App for Spanish‐Speaking Caregivers of Children After Hematopoietic Stem Cell Transplantation and Cancer Treatment

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Medication nonadherence during the first 100 days after pediatric hematopoietic stem cell transplantation (HSCT) and during oncology treatment increases risk for complications. BMT4me is a caregiver‐facing mobile health (mHealth) application providing medication reminders, symptom tracking, and note‐taking features to support ...
Micah A. Skeens, Madeline R. Peek, Bianca Franklin, Emre Sezgin, Melissa Beauchemin   +4 more
wiley   +1 more source

Identifying commonalities and differences between EHR representations of PASC and ME/CFS in the RECOVER EHR cohort

Communications Medicine
Background Shared symptoms and biological abnormalities between post-acute sequelae of SARS-CoV-2 infection (PASC) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) could suggest common pathophysiological bases and would support coordinated
John P. Powers, Tomas J. McIntee, Abhishek Bhatia, Charisse R. Madlock-Brown, Jaime Seltzer, Anisha Sekar, Nita Jain, Mady Hornig, Elle Seibert, Peter J. Leese, Melissa Haendel, Richard Moffitt, Emily R. Pfaff, On behalf of the N3C Consortium and RECOVER-EHR   +13 more
doaj   +1 more source

Effects of the caregiver burden perceived by caregivers of patients with neurological disorders on caregiver wellbeing and caregiver stress

Perspectives in Psychiatric Care, 2019
The present study was conducted to determine the effects of the caregiver burden perceived by caregivers of patients with neurological disorders on caregiver wellbeing and stress.The study was designed as a descriptive, cross-sectional, and correlational study.In the study, it was determined that the care burden is related to a caregiver's wellbeing ...
Fatma Özkan Tuncay, Tülay Kars Fertelli   +1 more
openaire   +3 more sources

ASSIST: Refinement of a Benefits Navigator Intervention Among Low‐Income Pediatric Oncology Families

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background/Objectives Children with cancer living in poverty experience worse survival and quality of life. Interventions connecting low‐income families to benefits (e.g., Supplemental Nutrition Assistance Program [SNAP] improve health outcomes; yet nearly 50% of SNAP‐eligible pediatric oncology families are unenrolled.
Puja J. Umaretiya, Selena Murcia Mendez, Jennifer Kellett, Sarah Wright, Marisel Ponton, Robin T. Higashi, Rahela Aziz‐Bose, Colleen A. Kelly, Ayesha Zia, Joanne Wolfe, Sandi L. Pruitt, Kira Bona   +11 more
wiley   +1 more source

Transforming dementia caregiver support with AI-powered social robotics

Frontiers in Robotics and AI
IntroductionInformal dementia caregivers face significant emotional and physical burdens, yet evidence-based interventions like REACH are often limited by high labor costs and scalability constraints.MethodsWe design a Robot-based Information and Support
Tyler Morris, Conor Brown, Xiaopeng Zhao, Xiaopeng Zhao, Linda Nichols, Linda Nichols, Jennifer Martindale-Adams, Jennifer Martindale-Adams, Sharon Bowland, Wenjun Zhou   +9 more
doaj   +1 more source

An [Imperfect] Case for Dyadic Research in Pediatric Psychosocial Oncology

Pediatric Blood &Cancer, EarlyView.
Stephanie M. Nanos, Lindsay A. Jibb, Gary Rodin   +2 more
wiley   +1 more source

Bridging the Gap in Neuroblastoma Care: Consensus‐Based Statements With Recommendations for Improved Patient and Caregiver Experiences

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Neuroblastoma's complex, heterogeneous biology poses significant diagnostic and therapeutic challenges, often requiring caregivers to absorb complex information and participate in time‐sensitive decisions. However, caregivers often feel unprepared to evaluate options.
Vickie Buenger, Joseph Bauer, Jennifer Diamond, Maggie Fader, Shae Hansen, Jacqueline M. Kraveka, Johanna Schoen, Amber Shearer, Dena Sherwood   +8 more
wiley   +1 more source