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Objective: This study determined if the caregivers of children in the emergency department (ED) have the same COVID-19 vaccination status as the child, the reasons they chose to not vaccinate the child, and self-identified barriers to vaccination to determine if the ED is appropriate for vaccination intervention.Methods: A survey was administered to caregivers of pediatric ED patients at four Children’s Hospitals in: Augusta, GA, Buffalo, NY, Madison, WI, and Sacramento, CA. Participants were asked about their and the child’s demographics, vaccination status, and barriers to vaccination. We used descriptive statistics, Cohen's kappa, and logistic regression to analyze responses.Results: 941 caregivers were considered for enrollment, and 800 consented to participation. Participants were 75% women with a mean age of 40.9 ± 8.9 years. 51% (409) of the pediatric ED patients were COVID-19 vaccinated, as were 74% (591) of the caregivers. There was variation across sites, but overall, 15% of caregivers of unvaccinated children wanted the child tobe vaccinated with the most common barriers to vaccination identified as safety data (25%), time availability (20%), and ability to obtain an appointment (13%). The most common reason for not wanting the child COVID-19 vaccinated was concern the vaccine didn’t work or had too many side effects.Conclusion: A small but clinically important group of pediatric ED patients are not COVID-19 vaccinated but their caregivers want them to be vaccinated, indicating that consideration should be given to offering vaccination in the ED. Reasons for avoiding COVID-19 vaccination were primarily concerns with efficacy and side effects.

Background: Person-centred services are inherently related to patients/caregivers' needs. However, the extent to which dysphagia services within Singapore meet consumer needs is largely unknown. Involving patients/caregivers in service evaluation/redesign deepens the understanding of consumer needs. This process also increases the success of implementing service enhancements through relevant and meaningful change. Aim: This study aimed to identify aspects of dysphagia services, within acute and subacute settings in Singapore, perceived as highly important and easy to change by patients/caregivers. Methods & Procedures: Using concept mapping methodology, 5 patients and 11 caregivers reflected on their experiences of receiving dysphagia care and proposed 59 unique suggestions to improve dysphagia services within Singapore. Then, each individual sorted the suggestions into groups based on similarity and rated each statement for its perceived importance and changeability for service enhancement. Data were analysed using multidimensional scaling, hierarchical cluster analysis, and bivariate analysis to generate clusters of conceptually similar suggestions and a prioritised list of suggestions for service enhancement. Results: Twelve clusters were identified, with most rated as more important than changeable for service improvement. Participants prioritised 23 (39%) of the suggestions as highly important and easy to change, and these focused on ensuring effective communication among consumers and healthcare team, enhancing patients and carers' access to support at home, increasing patients and carers' access to educational resources, and improving service quality and access through technology. Conclusion: These findings provide future directions on how to develop and implement dysphagia services in Singapore to better meet the needs of patients/caregivers.

This article examines the role of patients and caregivers as 'regulatory actors' in healthcare. It uses and extends 'regulatory space theory' to argue that failing to consider the role of patients and caregivers as 'regulatory actors' in healthcare regulatory spaces misses a key piece of the regulatory puzzle. We argue that in assisted dying and other healthcare contexts, evidence shows that some patients and caregivers do behave as regulatory actors, engaging in sustained and focused attempts to alter behaviour. We then suggest a framework which explicitly incorporates notions of why patients and caregivers act in regulatory ways is helpful in understanding what the appropriate response to such actions should be. While the contribution of patients and caregivers to regulation is valuable and should be supported where desired by the person, if patients and caregivers are acting out of necessity to address system issues or 'regulatory failure', other regulatory actors (e.g. governments) should proactively respond and address these issues to reduce the burden on patients and caregivers of having to take regulatory action. [ABSTRACT FROM AUTHOR]

Background Understanding the patient journey is important to optimize care for patients with atopic dermatitis (AD) and overcome challenges in diagnosis and management.Objective To explore patient and caregiver perspectives regarding their experience with AD.Methods Patients and caregivers of patients with AD completed a pre-meeting survey and were invited to join an advisory board meeting in their country (China, Hong Kong, Ireland, Japan and Lebanon) to discuss the survey results. Data were analyzed descriptively.Results The survey included 31 participants (patients and caregivers) from Hong Kong (n = 7), China (n = 7), Ireland (n = 6), Japan (n = 6) and Lebanon (n = 5). The most challenging factors in the AD journey were management of symptoms before a confirmed diagnosis (68%), sudden recurrence of flares or worsening of symptoms (68%) and lifestyle changes (52%). In terms of overall AD management, 35% of participants indicated that AD was managed well, 23% had a clear treatment plan and 19% were generally satisfied with disease management. A collaborative relationship with healthcare professionals was favored.Conclusion A holistic assessment of AD includes understanding patient and caregiver preferences, needs, experiences and disease perceptions. Addressing the identified gaps may improve the management of AD.

The article discusses the concept of patient authorship in peer-reviewed publications, where individuals with lived experience of a specific disease or condition are listed as authors. Patient engagement in research is increasingly recognized as valuable, with patients and caregivers providing unique insights and perspectives. While the number of publications with patient authors is growing, there are still barriers to overcome, such as the lack of clear standards for including patient authors. Existing guidelines support the inclusion of people with lived experience as authors, emphasizing the importance of respecting their privacy and ensuring their understanding of their responsibilities. [Extracted from the article]