Informal Caregivers of Patients with Disorders of Consciousness: a Qualitative Study of Communication Experiences and Information Needs with Physicians.
Karoline Boegle, Marta Bassi, Angela Comanducci, Katja Kuehlmeyer, Philipp Oehl, Theresa Raiser, Martin Rosenfelder, Jaco Diego Sitt, Chiara Valota, Lina Willacker, Andreas Bender, Eva Grill
{"title":"Informal Caregivers of Patients with Disorders of Consciousness: a Qualitative Study of Communication Experiences and Information Needs with Physicians.","authors":"Karoline Boegle, Marta Bassi, Angela Comanducci, Katja Kuehlmeyer, Philipp Oehl, Theresa Raiser, Martin Rosenfelder, Jaco Diego Sitt, Chiara Valota, Lina Willacker, Andreas Bender, Eva Grill","doi":"10.1007/s12152-022-09503-0","DOIUrl":null,"url":null,"abstract":"<p><p>Due to improvements in medicine, the figures of patients with disorders of consciousness (DoC) are increasing. Diagnostics of DoC and prognostication of rehabilitation outcome is challenging but necessary to evaluate recovery potential and to decide on treatment options. Such decisions should be made by doctors and patients' surrogates based on medico-ethical principles. Meeting information needs and communicating effectively with caregivers as the patients´ most common surrogate-decision makers is crucial, and challenging when novel tech-nologies are introduced. This qualitative study aims to explore information needs of informal DoC caregivers, how they manage the obtained information and their perceptions and experiences with caregiver-physician communication in facilities that implemented innovative neurodiagnostics studies. In 2021, we conducted semi-structured interviews with nine caregivers of clinically stable DoC patients in two rehabilitation centers in Italy and Germany. Participants were selected based on consecutive purposeful sampling. Caregivers were recruited at the facilities after written informed consent. All interviews were recorded, transcribed verbatim and translated. For analysis, we used reflexive thematic analysis according to Braun & Clarke (2006). Caregivers experienced the conversations emotionally, generally based on the value of the information provided. They reported to seek positive information, comfort and empathy with-in the communication of results of examinations. They needed detailed information to gain a deep understanding and a clear picture of their loved-one's condition. The results suggest a mismatch between the perspectives of caregivers and the perspectives of medical profession-als, and stress the need for more elaborate approaches to the communication of results of neu-rodiagnostics studies.</p><p><strong>Supplementary information: </strong>The online version contains supplementary material available at 10.1007/s12152-022-09503-0.</p>","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":" ","pages":"24"},"PeriodicalIF":2.6000,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9307713/pdf/","citationCount":"4","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Neuroethics","FirstCategoryId":"98","ListUrlMain":"https://doi.org/10.1007/s12152-022-09503-0","RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2022/7/23 0:00:00","PubModel":"Epub","JCR":"Q1","JCRName":"ETHICS","Score":null,"Total":0}
引用次数: 4
Abstract
Due to improvements in medicine, the figures of patients with disorders of consciousness (DoC) are increasing. Diagnostics of DoC and prognostication of rehabilitation outcome is challenging but necessary to evaluate recovery potential and to decide on treatment options. Such decisions should be made by doctors and patients' surrogates based on medico-ethical principles. Meeting information needs and communicating effectively with caregivers as the patients´ most common surrogate-decision makers is crucial, and challenging when novel tech-nologies are introduced. This qualitative study aims to explore information needs of informal DoC caregivers, how they manage the obtained information and their perceptions and experiences with caregiver-physician communication in facilities that implemented innovative neurodiagnostics studies. In 2021, we conducted semi-structured interviews with nine caregivers of clinically stable DoC patients in two rehabilitation centers in Italy and Germany. Participants were selected based on consecutive purposeful sampling. Caregivers were recruited at the facilities after written informed consent. All interviews were recorded, transcribed verbatim and translated. For analysis, we used reflexive thematic analysis according to Braun & Clarke (2006). Caregivers experienced the conversations emotionally, generally based on the value of the information provided. They reported to seek positive information, comfort and empathy with-in the communication of results of examinations. They needed detailed information to gain a deep understanding and a clear picture of their loved-one's condition. The results suggest a mismatch between the perspectives of caregivers and the perspectives of medical profession-als, and stress the need for more elaborate approaches to the communication of results of neu-rodiagnostics studies.
Supplementary information: The online version contains supplementary material available at 10.1007/s12152-022-09503-0.
期刊介绍：
Neuroethics is an international, peer-reviewed journal dedicated to academic articles on the ethical, legal, political, social and philosophical questions provoked by research in the contemporary sciences of the mind and brain; especially, but not only, neuroscience, psychiatry and psychology. The journal publishes articles on questions raised by the sciences of the brain and mind, and on the ways in which the sciences of the brain and mind illuminate longstanding debates in ethics and philosophy.
求助内容：
应助结果提醒方式：
京公网安备 11010802042870号
