Caregiver Perceptions of Their Communication With Rehabilitation Providers Who Treat Persons in Disordered States of Consciousness

Abstract

<h3>Research Objectives</h3> Describe family caregiver perceptions of their communication with rehabilitation practitioners (RP) when treating persons in disordered consciousness (DOC) after severe brain injury (sBI). <h3>Design</h3> Qualitative, using narrative interviewing and grounded theory methods to understand caregiver perceptions of interactions with RP. Cross-disciplinary rehabilitation team including caregivers, RP and researchers. <h3>Setting</h3> Community. <h3>Participants</h3> Fourteen family caregivers (12 female) of persons in DOC following sBI using snowball sampling. <h3>Interventions</h3> N/A. <h3>Main Outcome Measures</h3> N/A. <h3>Results</h3> Caregivers described exchanges with RPs as supportive and respectful but also challenging. Caregivers valued being given information they could understand such as when a RP said "You know him better than anybody." They also appreciated acknowledgement of their loved one's personhood such as "[Patient] writes his own chapters". But felt that personhood was dismissed by RPs when they heard "I've seen 300 cases like this" and their own observations not valued when hearing "it's just a reflex." In these situations, caregivers perceived RPs to be unsupportive and emotionally "not in tune" with them. Caregivers appreciated the opportunity to share their values and preferences but also experienced RPs as authoritarian, "it's their word or nothing," and inflexible, "they are caught up on stats." In those instances, caregivers perceived they were treated "like I know nothing" and were excluded from decision making saying, "they didn't fill us in." <h3>Conclusions</h3> Being a caregiver for persons in DOC is demanding and initially unfamiliar. In healthcare, communication and information exchange are important dimensions of shared decision making. Understanding caregiver perceptions of what is communicated fosters awareness of how caregivers may interpret RPs actions during their loved one's treatment and recovery. <h3>Author(s) Disclosures</h3> Nothing to disclose.