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Assessing psychosocial risk factors in children with Sickle Cell Disease.
BMC Health Serv Res
January 2025
Indiana University School of Medicine, 410 W 10th St, Suite 2000A, Indianapolis, IN, 46202, USA.
Background: Individuals with Sickle Cell Disease (SCD) are a minoritized and marginalized community that have disparate health outcomes as a result of systemic racism and disease-related stigma. The purpose of this study was to determine the psychosocial risk factors for families caring for children with SCD at a pediatric SCD center through use of the Psychosocial Assessment Tool (PAT), a validated caregiver-report screener.
Methods: The PAT was administered annually during routine clinical visits and scored by the SCD Social Worker to provide tailored resources to families.
From community to scale: Using community engagement to develop and validate a patient-informed cancer communication scale.
Patient Educ Couns
January 2025
Wayne State University Department of Oncology/Karmanos Cancer Institute, 4100 John R, Detroit, MI MM03CB, USA. Electronic address:
Objective: Racial disparities in clinical communication quality are well-established but most clinical communication assessment tools are created without the collaboration of racially-diverse patient populations. Our objective was to collaborate with Black and White cancer survivors, caregivers, and advocates to develop and validate a tool to assess physicians' patient-centered communication.
Methods: A panel of Black and White cancer survivors, caregivers, and advocates (n = 11) and researchers observed and discussed video-recorded patient-physician cancer clinical interactions to generate and refine a list of physician communication behaviors considered critical for high-quality patient-centered communication.
"Try to keep things going" - Use of various resources to balance between caregiving and other aspects of life: An interview study with informal caregivers of persons living with brain tumors in Sweden.
Eur J Oncol Nurs
January 2025
Department of Nursing, Sophiahemmet University, Stockholm, Sweden.
Purpose: Persons living with brain tumors may experience severe impairment, requiring social support (i.e., informal care).
View Article and Find Full Text PDFIntersection between individual, household, environmental and system level factors in defining risk and resilience for children in Kenya's ASAL: A qualitative study.
PLoS One
January 2025
Institute for Human Development, Aga Khan University, Nairobi, Kenya.
Introduction: Children growing up in arid and semi-arid regions of Sub-Saharan Africa (SSA) face heightened risks, often resulting in poor developmental outcomes. In Kenya, the arid and semi-arid lands (ASAL) exhibit the lowest health and developmental indicators among children. Despite these risks, some children grow up successfully and overcome the challenges.
View Article and Find Full Text PDFThe power of personas: Exploring an innovative model for understanding stakeholder perspectives in an oncology learning health network.
Learn Health Syst
January 2025
Northwell New Hyde Park New York USA.
Introduction: Learning health networks (LHNs) improve clinical outcomes by applying core tenets of continuous quality improvements (QI) to reach community-defined outcomes, data-sharing, and empowered interdisciplinary teams including patients and caregivers. LHNs provide an ideal environment for the rapid adoption of evidence-based guidelines and translation of research and best practices at scale. When an LHN is established, it is critical to understand the needs of all stakeholders.
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