Experiences of inpatient rehabilitation from the perspective of persons with acquired brain injury

Abstract

Background Perspectives of individuals with acquired brain injury (ABI) regarding inpatient rehabilitation experiences can inform patient-centered care; however, these voices are under-represented in the literature. Purpose To explore the experiences, needs, and preferences of patients from an ABI inpatient rehabilitation program in Ontario. Methods Using an interpretive description approach, we interviewed 12 participants and analyzed the transcripts inductively to generate themes. Findings We identified three major themes: (1) Life Rerouted – participants felt their lives diverted due to ABI, with rehabilitation seen as a way to return to pre-injury life, (2) Autonomy within Rehab highlighted the perceived importance of personal autonomy in decision-making within rehabilitation, and (3) Life (and Recovery) Go On reflected an ongoing recovery process after discharge – leading to mixed emotions. An overall message, “re-establishing personal identity is important to the recovery process,” reflected theories of biographical disruption and relational autonomy. Implications Our findings provide a patient perspective for clinicians and administrators to consider. We found that ABI was significantly disruptive to personal identity – resulting in tensions in autonomy while attempting to reclaim a sense of identity. We suggest counseling services and strategies supporting post-injury adjustment, along with ways for rehabilitation professionals to enhance patient autonomy where possible. Implications for rehabilitation Sustaining an ABI can significantly disrupt personal identity and sense of autonomy – especially as persons occupy the role of “patient” while in inpatient rehabilitation. Psychological support is recommended to address the impacts of ABI on patients’ sense of identity, as well as on family members. Strategies of support might include, providing formal psychotherapy, as well as creating opportunities for patients and family members to discuss the changes they are experiencing, and to establish their personal narratives (e.g., through writing or art) or peer mentorship programs between discharged and current patients. Clinicians can enhance patient autonomy by increasing opportunities for communication with patients about choice; educating patients and family members on the rehabilitation team’s decision-making process, and other methods that increase communication and provide consistent up-to-date information to patients and their family members.