Results 41 to 50 of about 315,529 (311)

Taking Time and Making Space for Patient and Caregiver Partners

Patient Experience Journal
Patient and caregiver engagement is a paramount element to ensure the voice of lived experience is integrated and prioritized in research. However, what it looks like to actually participate in authentic patient and caregiver engagement can be ...
R. Hamilton, L. Hives
doaj   +1 more source

“We Cannot Talk as a Family”: Complexities of Survivorship Communication Among Hispanic/Latino Young Adult Survivors of Childhood Cancer, Parents, and Clinicians

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Young adult childhood cancer survivors (YA‐CCS) have an increased risk of treatment‐related health complications throughout their lives. Lifelong survivorship care is recommended, yet many YA‐CCS experience disruptions in care during pediatric‐to‐adult transitions and do not receive recommended survivorship care.
Kevin Shanchen Pu, Nicole Fernández‐Viña, Briana C. Martin‐Villa, Daniela Ramirez, Rebecca M. Lewinsohn, Mary Smith, Heidi Boynton, Lidia Schapira, Stephanie M. Smith   +8 more
wiley   +1 more source

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

Evidence‐Based Clinical Practice Guidelines for the Management of Pediatric Febrile Neutropenia: Resource‐Sensitive Recommendations for the Asian Continent

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Febrile neutropenia (FN) is a frequent and serious complication in children receiving cancer therapy. Standardizing FN management across Asia is challenging due to variable healthcare infrastructure, diagnostic capacity, and infection patterns; however, it could improve resource use and patient outcomes.
Joliza Patricia Cañeba, Shweta Bansal, Tea Reljic, Allyne Montecillo‐Aguelo, Hamidah Alias, Farrah Amaranto, Maria Stella Aquino‐Calingasan, Bambang Ardianto, Eggi Arguni, Sally Blair, Thi Tam Dang, Maria Beatriz Gepte, Samanmalee Gunasekara, Andini Handayani, Miriam Kimpo, Catherine G. Lam, Nawachai Lertvivatpong, Sergio Licona, Ana Loseo, Ratha Mlis, Vivian Moreno Berrio, Nguyen Hoai Anh, Anna Lisa Ong‐Lim, Ha Thu Pham, Krishna Sagar Sharma, Bun Sereyleak, Sally Jane G. Velasco‐Aro, Su Yadana, Ambuj Kumar, Sheena Mukkada   +29 more
wiley   +1 more source

Relationship between the caregiver's sense of self-efficacy and the implications for the patient and for the caregiver. Literature review.

, 2023
reservedINTRODUZIONE AL PROBLEMA: Durante la degenza di una persona affetta da malattia o disabilità, sin da subito si cerca di identificare un possibile caregiver che possa prendersi cura della persona lungo il suo percorso a domicilio.
OCCHIPINTI, BEATRICE
core  

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

Feeding, Fear, and Acceptance: Caregivers’ Experiences of Nutritional Support During Childhood Cancer Treatment

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Purpose To explore caregivers' experiences and perceptions of the nutritional challenges faced by children and adolescents undergoing cancer treatment, including oral intake and the use of nutritional support. Methods This was a qualitative study based on focus groups with parents and caregivers at a Brazilian pediatric oncology hospital ...
Danyelle Apparecida Balsamão Marques, Mariana dos Santos Murra, Welinton Hirai, Ana Laura Balduino do Nascimento, Karla Emilia de Sá Rodrigues, Wilson Elias de Oliveira Junior   +5 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

Neurocognitive, School‐Based, and Quality of Life Outcomes for Youth With Sickle Cell Disease and Thalassemia: A Scoping Review

Pediatric Blood &Cancer, EarlyView.
ABSTRACT The medical burdens of sickle cell disease (SCD) and transfusion‐dependent β‐thalassemia (TDT) are chronic and cumulative, even in children. Yet the effects expand beyond medications and healthcare visits due to their impacts on school attendance, academic performance, and peer engagement.
Mary Ann Etling, Hakim Tokhi, Alexander A. Boucher   +2 more
wiley   +1 more source