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"That's not fair on my kid": Carers' perspectives on sport participation and experiences for children in out-of-home care.
Psychol Sport Exerc
January 2025
School of Human Sciences (Exercise and Sport Science), The University of Western Australia, Perth, Australia; Telethon Kids Institute, Perth, Australia.
Children in out-of-home care participate in less organised sport than children from other household structures, potentially reducing opportunities for improvements in social, developmental, and health outcomes. Despite this, little is known about barriers and facilitators of sport participation for children in care. We aimed to explore carers' perspectives on the influences on children in care's participation and experiences in organised sport.
View Article and Find Full Text PDFQuality of life in people with syndromic heritable thoracic aortic disease and their relatives: a qualitative interview based study.
Orphanet J Rare Dis
January 2025
Department of Social Work, Child Welfare and Social Policy, Faculty of Social Science, Oslo Metropolitan University, Oslo, Norway.
Introduction: The purpose of this study was to investigate perceptions and opinions on what constitutes determinants for quality of life (QoL) in individuals with syndromic Heritable Aortic Disease (sHTAD), utilizing a qualitative study approach. Further to discuss clinical implications and direction for research.
Method: A qualitative focus group interview study was conducted of 47 adults (Marfan syndrome (MFS) = 14, Loeys-Dietz syndrome (LDS) = 11, vascular Ehlers Danlos syndrome (EDS) = 11, relatives = 11).
Association Between Early Immunosuppression Center Variability and One-Year Outcomes After Pediatric Liver Transplant.
Pediatr Transplant
February 2025
Division of Pediatric Gastroenterology, Hepatology and Nutrition, Department of Pediatrics, University of California San Francisco, San Francisco, California, USA.
Background: Despite the existence of institutional protocols, liver transplant centers often have variability in early immunosuppression practices. We aimed to measure within-center variability in early immunosuppression after pediatric liver transplant (LT) and examine its association with one-year outcomes.
Methods: We analyzed pediatric LTs from 2013 to 2018 in the United Network for Organ Sharing registry, with data aggregated by center.
The technical expert/clinical user/patient panel (TECUPP): centering patient and family perspectives in patient-reported measure development.
Res Involv Engagem
January 2025
RAND, Santa Monica, CA, USA.
Patient and caregiver perspectives are increasingly incorporated into health care research and policymaking, but their inclusion in the quality measure development process often is not robust. We describe a stakeholder panel model for incorporating patient/caregiver voices in the development of patient-reported measures, the Technical Expert/Clinical User/Patient Panel (TECUPP) model. This model is characterized by significant or equal representation of people with lived experience of the disease or condition (as patients or caregivers) to the clinicians and others with technical expertise who typically comprise technical expert panels.
View Article and Find Full Text PDFFamily voices from the bedside: National Audit of Care at the End of Life (England and Wales).
BMJ Support Palliat Care
January 2025
Palliative Care, Oxford University Hospitals NHS Foundation Trust, Oxford, Oxfordshire, UK
Introduction: The National Audit of Care at the End of Life reports the quality of care provided to people dying in hospital. This paper reports the bereavement (quality) survey data about the families' view of care provided to the patient and support provided to the family.
Methods: Anonymised summary data were retrieved from 'Key findings for patients and carers on the quality of end of life care in acute and community hospitals' reports 2019-2022 and the summary report 2018.
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