Category Ranking
98%
Total Visits
921
Avg Visit Duration
2 minutes
Citations
20
Article Abstract
Download full-text PDF |
Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2432136 | PMC |
| http://dx.doi.org/10.1136/bmj.a356 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
The Experiences of Patients With Rare Diseases in Pennsylvania: A Community-Based Study.
Public Health Rep
September 2025
Department of Neurosurgery, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Objective: Rare diseases collectively affect approximately 30 million people in the United States. Despite advances in genomic medicine, early diagnosis is challenging because of limited awareness of, accessibility to, and disparities in health care resources. We assessed the real-world experiences of patients with rare diseases in Pennsylvania and evaluated the effect of delayed diagnosis on psychosocial and financial burdens.
View Article and Find Full Text PDF[Adverse events in healthcare: supporting caregivers in distress].
Rev Infirm
September 2025
Faculté des sciences infirmières, Pavillon Ferdinand-Vandry, local 3463, Université Laval, Québec, G1V 0A6, Canada. Electronic address:
While we work with patients when they are victims of an adverse event in their care, we too often ignore the fact that the caregiver also experiences the consequences of this event. Some of these events lengthen hospital stays, aggravate health problems and can even lead to death. For the caregivers involved, as well as for the health-care teams, the effects are far from negligible in terms of affect and psychological suffering.
View Article and Find Full Text PDFAcceptability and feasibility of a novel postural management night-time intervention to improve respiratory health of children and young people with complex neurodisability (Breathe-Easy): proof of concept study.
Physiotherapy
June 2025
PenCRU (Peninsula Childhood Disability Research Unit), Department of Health & Community Sciences, University of Exeter Medical School, University of Exeter, St Luke's Campus EX1 2LU, UK. Electronic address:
Objectives: Children and young people with complex neurodisability (CYPCN) are at high risk of respiratory illness, frequent hospital admissions and premature death. This study aimed to test the acceptability and feasibility of Breathe-Easy, a novel night-time postural intervention to improve respiratory health in CYPCN.
Design: Case series design incorporating a pre-post interventional study and qualitative study.
"Epilepsy, it's just not sexy, is it?": A qualitative exploration into health and social care professionals' perspectives of people with intellectual disabilities and epilepsy, in social care.
Epilepsy Behav
September 2025
University of Plymouth, Plymouth PL4 8AA, UK; CIDER, Cornwall Partnership NHS Foundation Trust Truro TR4 9LD, UK.
Background: Epilepsy is prevalent in 22.2% of the intellectual disability (ID) population, with complexities spanning across health and social care sectors. Minimal research has been conducted to explore the experiences of epilepsy care within social care, despite its significance.
View Article and Find Full Text PDFPerspectives on Accessing Mental Health Supports for Youth Living With Post-Traumatic Stress Symptoms After a Solid Organ Transplant.
Pediatr Transplant
November 2025
BC Children's and Women's Hospital, Vancouver, British Columbia, Canada.
Background: Many children and adolescents who undergo solid organ transplants (SOT) develop post-traumatic stress (PTS) symptoms. Despite its prevalence and strong association with long-term impairments in quality of life, PTS is often overlooked as a major co-morbidity in many transplant programs. To address this unmet need, the purpose of this study was to explore the factors that impede or facilitate awareness of PTS, access to resources, and readiness to engage with mental health services.
View Article and Find Full Text PDF