Informal Caregivers of Patients with Disorders of Consciousness: a Qualitative Study of Communication Experiences and Information Needs with Physicians

Karoline Boegle (1) , Marta Bassi , Angela Comanducci (2) , Katja Kuehlmeyer (1) , Philipp Oehl (1) , Theresa Raiser (1) , Martin Rosenfelder (1) , Jaco Diego Sitt (3) , Chiara Valota (2) , Lina Willacker (1) , Andreas Bender (1) , Eva Grill (1)

1 LMU - Ludwig Maximilian University [Munich] = Ludwig Maximilians Universität München
2 Fondazione Don Carlo Gnocchi
3 ICM - Institut du Cerveau = Paris Brain Institute

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.

Mots clés: Disorder of consciousness; Caregivers; Information needs; Effective communication; Functional Neurodiagnostics; Qualitative study; Wakefulness Syndrome

Domaines: Neurosciences [q-bio.NC]

Karoline Boegle, Marta Bassi, Angela Comanducci, Katja Kuehlmeyer, Philipp Oehl, et al.. Informal Caregivers of Patients with Disorders of Consciousness: a Qualitative Study of Communication Experiences and Information Needs with Physicians. Neuroethics, 2022, 15 (3), pp.24. ⟨10.1007/s12152-022-09503-0⟩. ⟨hal-04557999⟩