ABSTRACT
OBJECTIVES: To understand how patients and family members experience dehumanizing or humanizing treatment when in the ICU. DESIGN: Qualitative study included web-based focus groups and open-ended surveys posted to ICU patient/family social media boards. Focus groups were audio recorded and transcribed. Social media responses were collected and organized by stakeholder group. Data underwent qualitative analysis. SETTING: Remote focus groups and online surveys. PATIENTS: ICU patient survivors, family members, and ICU teams. INTERVENTIONS: Not available. MEASUREMENTS AND MAIN RESULTS: Semi-structured questions and open-ended survey responses. We enrolled 40 patients/family members and 31 ICU team members. Focus groups and surveys revealed three primary themes orienting humanizing/dehumanizing ICU experiences: 1) communication, 2) outcomes, and 3) causes of dehumanization. Dehumanization occurred during "communication" exchanges when ICU team members talked "over" patients, made distressing remarks when patients were present, or failed to inform patients about ICU-related care. "Outcomes" of dehumanization were associated with patient loss of trust in the medical team, loss of motivation to participate in ICU recovery, feeling of distress, guilt, depression, and anxiety. Humanizing behaviors were associated with improved recovery, well-being, and trust. "Perceived causes" of dehumanizing behaviors were linked to patient, ICU team, and healthcare system factors. CONCLUSIONS: Behaviors of ICU clinicians may cause patients and families to feel dehumanized when in the ICU. Negative behaviors are noticed by patients and families, possibly contributing to poor outcomes including mental health, recovery, and lack of trust in ICU teams. Supporting ICU clinicians may enable a more empathic environment and in turn more humanizing clinician-patient encounters.
ABSTRACT
OBJECTIVES: In New York City, asthma prevalence is greater in Hispanics than non-Hispanics for both children (10.9% vs. 7.4%) and adults (9.0% vs. 6.3%). Disparities in asthma management among Hispanics are found to arise, in part, from a limited education about asthma. Using elements of Community Based Participatory Research (CBPR), we worked with the community to identify asthma priorities and misconceptions among Hispanics and used that information to develop a tailored asthma educational tool-the Asthma Training Modules (ATMs). METHODS: Over the past 3 years (2016, 2017, and 2018), we conducted educational asthma workshops to collect and analyze information to develop the ATMs and a summary of the ATMs in an Asthma Educational Card (AEC). We trained 6 Asthma-Community-Leaders using the ATMs, who assembled community members for teaching sessions using the AEC. Participants completed a pre-and-post asthma knowledge questionnaire. RESULTS: We identified asthma priorities and misconceptions themed on: culturally relevant resources for Hispanics, symptom and trigger recognition, and treatments. A total of 104 participants attended the teaching sessions led by Asthma-Community-Leaders and participants' mean knowledge score increased from 64% pre-teaching to 85% post-teaching, (p < 0.01). CONCLUSION: Our community-led education, which included a tailored asthma educational tool and trained Asthma-Community-Leaders, successfully improved asthma knowledge among Hispanics. Further studies are warranted to determine whether these results are reproducible among a larger cohort and what the comparative effectiveness of our intervention as compared to other education-based interventions.
