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

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.

Keywords: Caregivers; Disorder of consciousness; Effective communication; Functional Neurodiagnostics; Information needs; Qualitative study.

Fig. 1

Thematic Map with three themes (ellipses) and eight subthemes (rectangles)

Fig. 2

Theme 1 “ Doctor-caregiver conversations entail an emotional exposure with potential burdens and benefits” with two subthemes (rectangles) and eight categories (rounded rectangles)

Fig. 3

Theme 2 “Doctor-caregiver conversations stipulate coping mechanisms in dependence of the caregivers’ coping styles” with four subthemes (rectangles) and six categories (rounded rectangles)

Fig. 4

Theme 3 “Needs and preferences for the doctor-caregiver-conversation” with two subthemes (rectangles) and seven categories (rounded rectangles)