Cargando…

Building a culture of engagement at a research centre for childhood disability

BACKGROUND: Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infras...

Descripción completa

Detalles Bibliográficos
Autores principales:	Pozniak, Kinga, Buchanan, Francine, Cross, Andrea, Crowson, Jennifer, Galuppi, Barb, Grahovac, Danijela, Gorter, Jan Willem, Hlyva, Oksana, Ketelaar, Marjolijn, Kraus de Camargo, Olaf, Krpan Mesic, Manda, Martens, Rachel, McCauley, Dayle, Nguyen, Linda, Palisano, Robert J., Phoenix, Michelle, Putterman, Connie, Rosenbaum, Peter, Sprung, Jennifer, Strohm, Sonya, Teplicky, Rachel, Thomson, Donna, Wright, Marilyn
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	BioMed Central 2021
Materias:	Research Article
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8572501/ https://www.ncbi.nlm.nih.gov/pubmed/34742354 http://dx.doi.org/10.1186/s40900-021-00319-5

Ejemplares similares

Beyond stereotypes of cerebral palsy: Exploring the lived experiences of young Canadians
por: Hanes, Julia E., et al.
Publicado: (2019)

Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability
por: Russell, Dianne J, et al.
Publicado: (2016)

Correlates of Mental Health in Adolescents and Young Adults with Cerebral Palsy: A Cross-Sectional Analysis of the MyStory Project
por: Gorter, Jan Willem, et al.
Publicado: (2022)

Are two youth-focused interventions sufficient to empower youth with chronic health conditions in their transition to adult healthcare: a mixed-methods longitudinal prospective cohort study
por: Gorter, Jan Willem, et al.
Publicado: (2015)

Psychometric properties and parental reported utility of the 19-item ‘About My Child’ (AMC-19) measure
por: Williams, Uzma, et al.
Publicado: (2018)

Psychometric properties of the English language version of the C-BiLLT evaluated in typically developing Canadian children
por: Bootsma, Jael N., et al.
Publicado: (2023)

The relationship between spasticity in young children (18 months of age) with cerebral palsy and their gross motor function development
por: Gorter, Jan Willem, et al.
Publicado: (2009)

CHILD-BRIGHT READYorNot Brain-Based Disabilities Trial: protocol of a randomised controlled trial (RCT) investigating the effectiveness of a patient-facing e-health intervention designed to enhance healthcare transition readiness in youth
por: Gorter, Jan Willem, et al.
Publicado: (2021)

Health-related quality-of-life measures for long-term follow-up in children after major trauma
por: Janssens, Loes, et al.
Publicado: (2008)

Programmes to prepare siblings for future roles to support their brother or sister with a neurodisability: protocol of a scoping review
por: Nguyen, Linda, et al.
Publicado: (2021)

Programs to Prepare Siblings for Future Roles to Support Their Brother or Sister with a Neurodevelopmental Disability: a Scoping Review
por: Nguyen, Linda, et al.
Publicado: (2023)

Diversified caregiver input to upgrade the Young Children’s Participation and Environment Measure for equitable pediatric re/habilitation practice
por: Villegas, Vivian C., et al.
Publicado: (2023)

You never transition alone! Exploring the experiences of youth with chronic health conditions, parents and healthcare providers on self‐management
por: Nguyen, T., et al.
Publicado: (2016)

Development of an outcome measurement system for service planning for children and youth with special needs
por: Kertoy, M K, et al.
Publicado: (2013)

A Web-Based Knowledge Translation Resource for Families and Service Providers (The “F-Words” in Childhood Disability Knowledge Hub): Developmental and Pilot Evaluation Study
por: Cross, Andrea, et al.
Publicado: (2018)

Canadian Resources for Siblings of Youth With Chronic Health Conditions to Inform and Support With Healthcare Management: A Qualitative Document Analysis
por: Nguyen, Linda, et al.
Publicado: (2021)

Focusing on the Environment to Improve Youth Participation: Experiences and Perspectives of Occupational Therapists
por: Anaby, Dana, et al.
Publicado: (2015)

Youth engagement in research: exploring training needs of youth with neurodevelopmental disabilities
por: Dong, Samantha Yimeng, et al.
Publicado: (2023)

Parental involvement and empowerment in paediatric critical care: Partnership is key!
por: van den Hoogen, Agnes, et al.
Publicado: (2022)

LEARN 2 MOVE 2-3: a randomized controlled trial on the efficacy of child-focused intervention and context-focused intervention in preschool children with cerebral palsy
por: Ketelaar, Marjolijn, et al.
Publicado: (2010)

Participation in physical play and leisure: developing a theory- and evidence-based intervention for children with motor impairments
por: Kolehmainen, Niina, et al.
Publicado: (2011)

Cross-Cultural Adaptation and Evaluation of the Participation and Environment Measure for Children and Youth to the Indian Context—A Mixed-Methods Study
por: Srinivasan, Roopa, et al.
Publicado: (2021)

Information and Empowerment of Families of Children With Cerebral Palsy in Brazil: The Knowledge Translation Role of Nossa Casa Institute
por: Airoldi, Marina J., et al.
Publicado: (2021)

Exploring the “how” in research partnerships with young partners by experience: lessons learned in six projects from Canada, the Netherlands, and the United Kingdom
por: Nguyen, Linda, et al.
Publicado: (2022)

Reaching your development goals
por: McCauley, Cynthia D, et al.
Publicado: (1998)

Sleep problems in children with cerebral palsy and their parents
por: Hulst, Raquel Y, et al.
Publicado: (2021)

Pervasive Mitochondrial Sequence Heteroplasmy in Natural Populations of Wild Carrot, Daucus carota spp. carota L
por: Mandel, Jennifer R., et al.
Publicado: (2015)

Increased Education is Associated with Decreased Compliance in an Urban Multi-Ethnic Lupus Cohort
por: Gross, Rachel, et al.
Publicado: (2014)

A Mixed-Methods Feasibility Study of Integrated Pediatric Complex Care: Experiences of Parents With Care and the Value of Parent Engagement in Research
por: Hlyva, Oksana, et al.
Publicado: (2021)

Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis
por: McCauley, Rachel, et al.
Publicado: (2021)

Mutual support between patients and family caregivers in palliative care: A qualitative study
por: McCauley, Rachel, et al.
Publicado: (2023)

Designing a tool to support patient and public involvement in research projects: the Involvement Matrix
por: Smits, Dirk-Wouter, et al.
Publicado: (2020)

Becoming and staying physically active in adolescents with cerebral palsy: protocol of a qualitative study of facilitators and barriers to physical activity
por: Claassen, Aniek AOM, et al.
Publicado: (2011)

How do adolescents with cerebral palsy participate? Learning from their personal experiences
por: Wintels, Sophie Catharina, et al.
Publicado: (2018)

Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program
por: van Schelven, Femke, et al.
Publicado: (2020)

Professionals' motivation to support parental self‐management regarding children with physical disability in Dutch rehabilitation services: ‘Please mind your gap’
por: Wong Chung, Ruud, et al.
Publicado: (2021)

Cross-cultural adaptation of the Participation and Environment Measure for Children and Youth (PEM-CY) into German: a qualitative study in three countries
por: Krieger, Beate, et al.
Publicado: (2020)

Usability of the Participation and Environment Measure Plus (PEM+) for Client-Centered and Participation-Focused Care Planning
por: Jarvis, Jessica M., et al.
Publicado: (2019)

Focus on autonomy: Using ‘Skills for Growing Up’ in pediatric rehabilitation care
por: Hilberink, Sander R., et al.
Publicado: (2020)

A browser-based event display for the CMS Experiment at the LHC using WebGL
por: McCauley, T
Publicado: (2017)

Cannot write session to /tmp/vufind_sessions/sess_2nfogq2dv1e19f99vv7vj90iku