Explicating Integrative and Declarative Shared Treatment Decision Making in Rehabilitation Encounters When Patients are Without a Voice: A Grounded Theory Analysis

Abstract

<h3>Research Objectives</h3> To describe the extent of collaboration in everyday treatment decisions between practitioners (e.g., rehabilitation therapists, physiatrists) and family caregivers of a patient with disorders of consciousness (DoC). <h3>Design</h3> Ethnographic approach used rehabilitation observations triangulated with narrative interviews. <h3>Setting</h3> Observations of rehabilitation encounters occurred in a level I trauma hospital. Interviews occurred either virtually or in-person at a mutually agreed upon location. <h3>Participants</h3> 14 encounters among rehabilitation practitioners (n=8), family caregivers (n=2), and adult patients with disorders of consciousness (n=2). Interviews with family caregivers (n=17) and rehabilitation practitioners (n=7). <h3>Interventions</h3> Not applicable. <h3>Main Outcome Measures</h3> Not applicable. <h3>Results</h3> Data were analyzed using open coding and constant comparison techniques based in a grounded theory approach. 88 interactions were identified across 14 rehabilitation encounters. For analysis, we defined micro-decisions as small-scale treatment decisions that often occur multiple times within a rehabilitation encounter. Each rehabilitation encounter had multiple treatment activities and micro-decisions at the patient's bedside. Two types of shared treatment decisions were identified—integrative and declarative. Integrative decision-making occurred when family were included in the treatment session and their unsolicited contributions provided new information for in-the-moment decision-making. Declarative decision making occurred when the practitioner elicited the patient's values, preferences, and/or priorities from the family and then the practitioner executed these preferences within the session. Identifying and describing two ways in which sharing treatment decisions occurs makes the tacit explicit. <h3>Conclusions</h3> Because individuals in DoC cannot advocate for themselves, partnership between the rehabilitation practitioners and family caregivers is the hallmark of rehabilitation treatments with these individuals. Explicating two types of shared treatment decision-making informs the rehabilitation field so that we can communicate the process of engaging families as partners in rehabilitation treatment decisions. <h3>Author(s) Disclosures</h3> No known conflicts.