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Background: Epidermolysis bullosa (EB) comprises a group of rare genetic conditions that are characterized by fragility of the skin and mucous membranes and formation of blisters with minor trauma. Severe forms can be life limiting. The palliative care needs of children with severe EB are poorly described. Aim: The aim of this case series was to examine the contribution of a pediatric palliative care service to the complex health care needs of children with severe EB. Methods: We present a case series of five children with severe forms of EB who were known to the state-wide Victorian Paediatric Palliative Care Service, with a discussion of our learnings in caring for these children and their families. Results: Medical treatment decision making in EB provokes complex ethical, psychological, personal, and professional dilemmas. This case series highlights the diversity of management approaches that may be considered, each tailored to the unique context of the child and family. [ABSTRACT FROM AUTHOR]

Background: Family caregivers often experience psychological distress during a critical care hospitalization, potentially compromising their ability to function effectively in a supportive role. A better understanding of the sources of family caregiver distress is needed to inform strategies to mitigate its development and impact. Objective: To explore sources of family caregiver psychological distress during a critical care hospitalization and how caregivers' experiences may differ by their anxiety level. Methods: Forty adult family members of patients receiving mechanical ventilation for more than 72 hours in 2 intensive care units at an academic medical center were interviewed. A qualitative directed content analysis was done. Experiences were compared by anxiety level group, defined using the Hospital Anxiety and Depression Scale: anxiety (n = 15), borderline anxiety (n = 11), and low anxiety (n=14). Results: Most family members (32%) were adult children; no major demographic differences were noted across anxiety groups. Among caregivers in the anxiety group, salient factors included early unknowns around critical illness, health care team processes, care decisions made, financial and housing concerns, family dysfunction, and new responsibilities. In general, low-anxiety family caregivers did not express their concerns using language of distress but rather expressed emotion and disappointment and often took action to process their concerns. Conclusions: Factors influencing family caregiver distress during the critical care stay were wide-ranging and varied by level of anxiety. The findings highlight several key areas and potential interventions to reduce psychological distress, especially among caregivers with anxiety. [ABSTRACT FROM AUTHOR]

• Health care personnel (HCP) consider some organisms less risky than others. • Varying knowledge of personal protective equipment (PPE) protocols leads to confusion. • Confusion of clean versus contaminated space may lead to contamination. • Training should include real-work scenarios and interdisciplinary education. • Facility assessments of environmental factors may facilitate PPE use. Health care personnel (HCP) use of personal protective equipment (PPE) reduces infectious disease transmission. However, PPE compliance remains low. The objective of this study was to better understand how HCP perceptions factor into PPE decision making as well as how organizational processes and the environment impact behavior. This qualitative study used observation and focus groups at 2 medical centers. Data were analyzed using thematic analysis. The decision to use PPE and to follow precaution practices was influenced by risk perception as well as organizational and environmental factors. Perceived risk, related to certain organisms and work tasks, was considered by HCP when deciding to use PPE. Organizational processes, such as policies that were not applied uniformly, and environmental factors, such as clean versus contaminated space, also played a role in HCP PPE use. Because HCP seemed focused on organisms and work tasks, education on specific organisms and helping HCP think through their workflow may be more effective in conveying the importance of PPE in reducing transmission. Additionally, isolation practices should be compared across disciplines to ensure they complement, rather than contradict, one another. Assessment of the environment may help protect HCP and patients from infectious organisms. Preventing the spread of infectious organisms should not depend solely on PPE use, but should also be recognized as an organizational responsibility. [ABSTRACT FROM AUTHOR]