In this study, 16 family caregivers of patients with lymphoma were interviewed on their changing perceptions of hope. The changing process starts from diagnosis to the present treatment state. We found that the changing perception of hope can be divided into three stages: the stage of generalized hope focusing merely on treatment and passive hope focusing on harm-avoidance, the stage of specified hope and active hope aiming at comfort-seeking, and the stage of multifaceted hope. Family caregivers' understanding of the past experience of and new information on the disease are the foundation of the perception of hope. The perception of hope in cancer patients' family caregivers develops from "therapeutic hope" to "psychosocial hope," shifting from "consequential hope" to "procedural hope."
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http://dx.doi.org/10.1177/1049732318779051 | DOI Listing |
J Med Internet Res
January 2025
Department of Basic and Community Nursing, School of Nursing, Nanjing Medical University, NanJing, China.
Background: Telehealth interventions can effectively support caregivers of people with dementia by providing care and improving their health outcomes. However, to successfully translate research into clinical practice, the content and details of the interventions must be sufficiently reported in published papers.
Objective: This study aims to evaluate the completeness of a telehealth intervention reporting in randomized controlled trials (RCTs) conducted for caregivers of people with dementia.
J Particip Med
January 2025
Division of Allergy & Pulmonary Medicine, Washington University School of Medicine, St Louis, MO, United States.
Background: Adolescents and young adults (AYA) with cystic fibrosis (CF) are at risk for deviating from their daily treatment regimen due to significant time burden, complicated daily therapies, and life stressors. Developing patient-centric, effective, engaging, and practical behavioral interventions is vital to help sustain therapeutically meaningful self-management.
Objective: This study aimed to devise and refine a patient-centered telecoaching intervention to foster self-management in AYA with CF using a combination of intervention development approaches, including an evidence- and theory-based approach (ie, applying existing theories and research evidence for behavior change) and a target population-centered approach (ie, intervention refinement based on the perspectives and actions of those individuals who will use it).
Gac Med Mex
January 2025
Laboratorio de Reprogramación Celular y Enfermedades Crónico-Degenerativas, Department of Physiology, Universidad Nacional Autónoma de México, Mexico City, Mexico.
Progressive supranuclear palsy (PSP) is a rare, atypical parkinsonism, characterized by the presence of intracerebral tau protein aggregates and determined by a wide spectrum of clinical features. The definitive diagnosis is postmortem and is identified through the presence of neuronal death, gliosis, and aggregates of the tau protein presented in the form of neurofibrillary tangles (MNF) with a globose appearance in regions such as the subthalamic nucleus, the substantia nigra, and the globus pallidus The findings in ancillary imaging studies, as well as fluids biomarkers, are not sufficient to support diagnosis of PSP but are used to rule out similar pathologies because there are still no specific or validated biomarkers for this disease. The current treatment of PSP is focused on reducing symptoms, although emerging therapies seek to counteract its pathophysiological mechanisms.
View Article and Find Full Text PDFJMIR Form Res
January 2025
Department of Psychiatry and Behavioral Sciences, University of California, San Francisco, San Francisco, CA, United States.
Background: Current research on digital applications to support the mental health and well-being of foster youth is limited to theoretical applications for transition-aged foster youth and support platforms developed without intentional input from foster youth themselves. Centering the lived expertise of foster youth in digital solutions is crucial to dismantling barriers to care, leading to an increase in service access and improving mental health outcomes. Co-design centers the intended end users during the design process, creating a direct relationship between potential users and developers.
View Article and Find Full Text PDFAppl Health Econ Health Policy
January 2025
Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
Introduction: Genomic medicine has features that make it preference sensitive and amenable to model-based health economic evaluation. Preferences of patients, caregivers, and clinicians related to the uptake and delivery of genomic medicine technologies and services that are not captured in health state utility weights can affect the intervention's cost-effectiveness and budget impact. However, there is currently no established or agreed-on approach for integrating preference information into economic evaluations.
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