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"I'm not sad anymore, I'm proud to have such a child": The experiences of caregivers of dependents with cerebral palsy living in Greece.
J Pediatr Nurs
January 2025
Department of Nursing, School of Health Rehabilitation Sciences, University of Patras, Nikolaou Gizi 4, Patras, Greece.
Background: People with cerebral palsy are largely dependent on their caregivers, who are most often members of their family. Caring for people with disabilities can be challenging as both dependents and caregivers face problems of social isolation and stigmatization.
Aim: The aim of this study was to understand the experiences of caregivers of dependents with cerebral palsy in Greece.
Cross-Platform Ecological Momentary Assessment App (JTrack-EMA+): Development and Usability Study.
J Med Internet Res
January 2025
Research Centre Jülich, Institute of Neuroscience and Medicine, Brain and Behaviour (INM-7), Jülich, Germany.
Background: Traditional in-clinic methods of collecting self-reported information are costly, time-consuming, subjective, and often limited in the quality and quantity of observation. However, smartphone-based ecological momentary assessments (EMAs) provide complementary information to in-clinic visits by collecting real-time, frequent, and longitudinal data that are ecologically valid. While these methods are promising, they are often prone to various technical obstacles.
View Article and Find Full Text PDFPurpose: To gain a deeper understanding of Black older adults' (aged ≥65 years) experiences with adverse childhood experiences (ACEs), including racism, and their use of active coping throughout their life course.
Method: Qualitative interviews were conducted with 21 Black older adults followed by administration of the First 18 Years Survey (measuring ACEs) and the John Henryism Active Coping Scale. Qualitative data were analyzed using thematic narrative analysis.
Convening Hispanic/Latino Caregiving Advisors for Inclusive Research in Dementia Palliative Care.
J Palliat Med
January 2025
Division of Geriatric Medicine, Department of Medicine, University of Colorado School of Medicine, Aurora, Colorado, USA.
Dementia clinical trials often fail to include diverse and historically minoritized groups. We sought to adapt the Alzheimer's Disease and Related Dementias-Palliative Care (ADRD-PC) clinical trial to improve enrollment and address the cultural needs of people with late-stage ADRD who identify as Hispanic or Latino and their family caregivers. Bilingual, bicultural research team members adapted study materials and processes using the Cultural Adaptation Process Model.
View Article and Find Full Text PDFPhenomenological Description of the Experiences of Teenagers With Critically Ill Parents.
J Nurs Res
February 2025
Department of Psychiatry and Behavioral Sciences, Stanford University, Palo Alto, CA, USA.
Background: Critical illness not only threatens the life of the patient but also may profoundly impact the lives of their loved ones. For teenagers with a critically ill parent, these impacts may have significant, developmentally impactful effects. A descriptive understanding of these effects may advance scholarly understanding of the challenges these teenagers face.
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