Un outil d’autoévaluation des émotions douloureuses pour mieux accompagner les proches aidants

Abstract

ObjectivesInformal caregivers take on a variety of tasks to help their ill loved ones. Despite the personal and professional resources available, their health is sometimes impacted, and they may suffer from sleep disorders, chronic fatigue, and psychological distress. Supporting informal caregivers to prevent the risk of exhaustion entails a recognition of distressful emotions that can be associated with the role of caregiver. This article presents the Distressing Emotions Evaluation (DEE) tool, a quantitative and qualitative tool designed to support informal caregivers in the context of the Ensemble program which proposes tailored and individualized interventions. Ensemble is independent of the patient's treatment and follow-up and its objective is to offer individual support to informal caregivers. It is structured in three phases spread over five one-hour sessions: an evaluation phase, followed by a support phase and finally an assessment phase. During the first phase, a professional trained in Ensemble's methods assesses the needs, difficulties, painful emotions, and social resources of the informal caregiver. The DEE includes a rating scale, assessing the frequency of distressing emotions and the urgency of the need for help with dealing with them, followed by a dialogue to identify clinical actions. Materials and methodsTo assess the psychometric properties of the DEE, data were collected from 73 informal caregivers of patients with psychiatric disorders. The DEE tool consists of an inventory of cards illustrating eight distressful emotions: anxiety, anger, confusion, guilt, helplessness, feeling judged by others, loneliness, and sadness/distress. Demographic data, DEE scores, and Brief Symptom Inventory (BSI) scores were collected during interviews with Ensemble practitioners. ResultsHelplessness and anxiety are particularly distressing emotions for informal caregivers. Indeed, they are among the most frequently reported emotions (present for 88 % and 71 % of the participants, respectively), and are the emotions for which unmet need for help is the most urgent (in 49 % and 40 % of the participants, respectively). Validity analyses with reference to associations with BSI scores show that the frequency of experiencing distressing emotions is a significant indicator of the psychological distress of informal caregivers. ConclusionDEE scores can inform a practitioner's follow-up, e.g., with tools for managing emotions. The positive psychometric properties of the DEE, and its simple use based on illustrated card sorting which facilitates verbalization, make it a tool that is readily administered and well suited to the personalized support of informal caregivers. Based on the EED tool, the results demonstrated that helplessness and anxiety are very frequent painful emotions for informal caregivers and that there is a need for help that is not currently met by existing support services. The engaging clinical EED tool makes it easier to work with informal caregivers. This approach can be used to increase health literacy in personalized interventions focused on the recovery paradigm.