Attitudes and perceptions of next-of-kin/loved ones toward end-of-life HIV cure-related research: A qualitative focus group study in Southern California.
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ABSTRACT:
SUBMITTER: Javadi SS
PROVIDER: S-EPMC8104928 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundHospitals are institutions whose primary task is to treat patients. Family-centered care, which considers loved ones as equal partners in patient care, has been gaining recognition in the adult care setting. Our aim was to record experiences of and opinions on communication between hospital-based healthcare providers and patients' loved ones, related but not limited to the rigorous mitigation measures implemented during the COVID-19 pandemic.MethodsThe Twitter profile @HospitalsTalkTo and hashtag #HospitalsTalkToLovedOnes were created to interact with the Twitter public between 7 June 2021 and 7 February 2022. Conversations surrounding #HospitalsTalkToLovedOnes were extracted and subjected to natural language processing analysis using term frequency and Markov chain analysis. Qualitative thematic analysis was performed on the 10% most interacted tweets and of tweets mentioning "COVID" from a personal experience-based subset.ResultsWe collected 4412 unique tweets made or interacted by 7040 Twitter users from 142 different countries. The most frequent words were patient, hospital, care, family, loved and communication. Thematic analysis revealed the importance of communication between patients, patients' loved ones and hospitals; showed that patients and their loved ones need support during a patient's hospital journey; and that pediatric care should be the gold standard for adult care. Visitation restrictions due to COVID-19 are just one barrier to communication, others are a lack of phone signal, no space or time for asking questions, and a complex medical system. We formulate 3 recommendations to improve the inclusion of loved ones into the patient's hospital stay.Conclusions"Loved ones are not 'visitors' in a patient's life". Irrespective of COVID-19, patient's loved ones need to be included during the patient's hospital journey. Transparent communication and patient empowerment increase patient safety and improve the hospital experience for both the patients and their loved ones. Our findings underline the need for the concept of family-centered care to finally be implemented in adult nursing clinical practice.
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