Abstract :
[en] Due to the absence of communication, care for patients with disorders of consciousness (DOC) is an important clinical and ethical issue, especially for pain assessment and management.
In this survey we aim to investigate the needs and beliefs of patients’ relatives and caregivers regarding pain assessment and management. By allowing a better understanding of their expectations this study could improve the management of pain in this sensitive population and decrease psychological distress of health professionals, caregivers and families..
To this end we developed an online survey that will be diffused through 40 institutions in Europe involved in the management of DOC patients. ,. The questionnaire will be divided in 2 sections: a first part to collect respondents’ socio-demographic information (e.g., age, gender, country of residence, nationality, religion, current work, year of experience with DOC patient; in compliance with the GDPR regulation) and a second part collecting data to understand the respondents’ knowledge and expectations on pain assessment and management of DOC patients (e.g., questions regarding pain perception in DOC patient, behavioural signs of pain, pain assessment tools, pain treatment). The study will last about 15 minutes and adapted according to the group (i.e., healthcare or family member).
Chi-square tests will assess differences between the proportions of answers depending on the following variables: gender, profession, religion, and years of expertise or living with DOC patients.
Based on the answers, we aim to develop guidelines to improve pain management and assessments for families and caregivers of DOC patients.
