Experience-based co-design - Open Access .click

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Co-design and evaluation of an information and communication technology-based solution to support mild stroke – an experience-based co-design study

Disability and Rehabilitation: Assistive Technology
Approximately 60-70% of people with stroke experience a mild incident. However, mild stroke can significantly impact daily life for these individuals and their significant others. Reviews suggest that the use of information and communication technology (ICT) can add value to the existing stroke rehabilitation. The purpose of the current study was to co-
Stina Meyer Larsen +3 more
openaire +2 more sources

Hospitalization Through Families’ Eyes: Comparing Inpatient Care Quality for Children With Sickle Cell Disease and Cystic Fibrosis in Canada

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Sickle cell disease (SCD) is a chronic, inherited hemoglobinopathy that requires frequent hospitalization for disease‐related complications. Canadian data on inpatient care is limited. This study compared caregiver‐reported hospital experiences of children with SCD to those with cystic fibrosis (CF), a chronic, autosomal recessive ...
Hailey M. Zwicker +11 more
wiley +1 more source

Advancing engagement methods for trials: the CORE study relational model of engagement for a stepped wedge cluster randomised controlled trial of experience-based co-design for people living with severe mental illnesses

Trials, 2017
Background Engagement is essential in trials research but is rarely embedded across all stages of the research continuum. The development, use, effectiveness and value of engagement in trials research is poorly researched and understood, and models of ...
Lauralie Richard +9 more
doaj +1 more source

Assessing Cognitive Functioning in Children With Brain Tumors: Interaction of Neighborhood Social Determinants of Health and Neurological Risk

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background This study investigated how neighborhood‐level social determinants of health (SDOH), including redlining and neurological risk, interact to influence cognitive outcomes in children treated for brain tumors (CTBT). Methods A retrospective chart review of 161 CTBT aged 5–17 was conducted.
Alannah R. Srsich +5 more
wiley +1 more source

Time Toxicity in Wilms Tumor: Quantifying the Burden of Healthcare Interaction in the First Year After Diagnosis

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Wilms tumor (WT) treatment imposes a significant time burden on patients and their families. Time toxicity is a patient‐centered metric that quantifies the burden of healthcare interaction. We sought to define time toxicity in the first year after diagnosis of WT and hypothesized that it would increase as tumor stage and treatment ...
Caleb Q. Ashbrook +6 more
wiley +1 more source

Involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement

Research Involvement and Engagement, 2019
Plain English summary Patient or user involvement in health research is well-established but is often limited to advising on research questions and design, leaving researchers to collect and analyse ‘data’ (which in this paper means written copies of ...
Louise Locock +6 more
doaj +1 more source

‘Islands in the stream’ – causeways or compromise? [PDF]

, 2010
In recent years, policy drivers have given a strategic push towards encouraging ‘employer-led’ work based learning in Higher Education. For example, Leitch ( 2006?) and other key policy makers advocate institutional change and reform in HE to respond to ...
Leonard, Dilys T., Talbot, Jon
core

Co-designing complex therapy interventions with parents as partners in the care of children with cerebral palsy: An Experience-based Co-design study in England

Research in Developmental Disabilities
Parents of children with hemiplegic cerebral palsy are increasingly involved in therapy intervention delivery. Enhancing the ways that parents are supported in delivery is key to optimising outcomes. This study aimed to refine an existing programme in England to better support parents partnering in their child's intervention delivery.Experience-based ...
Massey, Jill +4 more
openaire +3 more sources

Emapalumab for Immune Effector Cell‐Associated Hemophagocytic Lymphohistiocytosis‐Like Syndrome Following CD19‐Directed CAR‐T in Two Patients With B‐ALL: Clinical and Biomarker Correlates

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Immune effector cell‐associated hemophagocytic lymphohistiocytosis‐like syndrome (IEC‐HS) is a life‐threatening hyperinflammatory toxicity distinct from cytokine release syndrome (CRS) and neurotoxicity following chimeric antigen receptor T‐cell (CAR‐T) therapy. In a single‐institution retrospective cohort of pediatric and young adult patients
Thomas J. Galletta +6 more
wiley +1 more source

Testing accelerated experience-based co-design: a qualitative study of using a national archive of patient experience narrative interviews to promote rapid patient-centred service improvement

Health Services and Delivery Research, 2014
Background: Measuring, understanding and improving patients’ experiences is of central importance to health care systems, but there is debate about the best methods for gathering and understanding patient experiences and how to then use them to improve ...
Louise Locock +9 more
doaj +1 more source

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