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Voices of Hope: Leveraging Think-Aloud Cognitive Interviews to Develop a Hope Assessment Tool for Young People Living with Chronic Health Conditions.
Children (Basel)
November 2024
School of Nursing, University of California San Francisco, San Francisco, CA 94143, USA.
Background/objectives: Hope is a universal, multidimensional, and nuanced concept that may have specific meaning for young people living with chronic health conditions anticipated to last into adulthood. We previously identified definitions of hope for youth living with chronic health conditions derived from young people's and their caregivers' own words. Here, we aimed to develop a hope assessment tool to facilitate the future evaluation of interventions to support wellness and health for young people growing up with chronic health conditions; Methods: We developed Likert-type scale questions using the young people's and caregivers' definitions of hope and applied the think-aloud cognitive interview method to assess understanding and to inform sequential iteration.
View Article and Find Full Text PDFAdvances in diabetes technology to improve the lives of people with cystic fibrosis.
Diabetologia
October 2024
Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
People with cystic fibrosis (CF) are at risk for dysglycaemia caused by progressive beta cell dysfunction and destruction due to pancreatic exocrine disease and fibrosis. CF-related diabetes (CFRD) is a unique form of diabetes that has distinctive features from both type 1 and type 2 diabetes. Recent advances in diabetes technology may be of particular benefit in this population given the complex, multi-system organ involvement and challenging health issues that people with CFRD often face.
View Article and Find Full Text PDFPediatric Medical Traumatic Stress and Trauma-Informed Care in Pediatric Chronic Illness: A Healthcare Provider Survey.
J Pediatr
October 2023
Department of Pediatrics, University of California San Francisco, San Francisco, CA.
Objective: To inform approaches to pediatric medical traumatic stress (PMTS) by exploring providers' (1) perception of the impact of PMTS on the medical care of patients with pediatric-onset chronic illnesses, (2) self-reported competencies and practices of PMTS prevention, treatment, and counseling, and (3) perception of the barriers influencing the adoption of these practices.
Study Design: A convenience sample of multidisciplinary healthcare providers was recruited through a multimodal recruitment strategy to participate in an electronic survey adapted from the Trauma-Informed Care Provider Survey.
Results: Among participants (n = 304), 99% agreed that PMTS impacts patient health.
Medical traumatic stress in cystic fibrosis: A qualitative analysis.
J Cyst Fibros
July 2023
Department of Pediatrics, University of California San Francisco, San Francisco, CA, USA.
Background: People living with cystic fibrosis (PwCF) face a lifetime of potentially traumatic illness-related experiences that can lead to posttraumatic stress symptoms. Existing criteria for this type of posttraumatic stress, called medical traumatic stress (MTS), may not fully capture the CF experience. In this study we aimed to explore: 1) illness-related experiences perceived as traumatic in the setting of CF, 2) perceived MTS symptoms in PwCF, and 3) perceived health-related functional impairments from MTS.
View Article and Find Full Text PDFImpact of Anaerobic Antibacterial Spectrum on Cystic Fibrosis Airway Microbiome Diversity and Pulmonary Function.
Pediatr Infect Dis J
November 2021
From the Division of Infectious Diseases, Children's National Hospital.
Background: The role of anaerobic organisms in the cystic fibrosis (CF) lung microbiome is unclear. Our objectives were to investigate the effect of broad (BS) versus narrow (NS) spectrum antianaerobic antibiotic activity on lung microbiome diversity and pulmonary function, hypothesizing that BS antibiotics would cause greater change in microbiome diversity without a significant improvement in lung function.
Methods: Pulmonary function tests and respiratory samples were collected prospectively in persons with CF before and after treatment for pulmonary exacerbations.
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