The impact of unmet communication and education needs on neurosurgical patient and caregiver experiences of care: A qualitative exploratory analysis.

OBJECTIVE: To describe neurosurgical patient and caregiver perceptions of provider communication, the impact of patient education, and their understanding of information given to them throughout the neurosurgical care trajectory. METHODS: We organized focus groups composed of patients who had been hospitalized on the neurosurgical service at 5 urban academic tertiary referral hospitals within a large university health system, along with the patients' caregivers. During focus groups, we used semistructured questions to answer the study questions. Content analysis was used to analyze the data. RESULTS: Forty-three patients and caregivers took part in 5 focus groups. In total we identified 12 coding categories (or topics) that were associated with patient and family information needs. Despite the fact all patients were receiving care within the same health system, often with the same care team and clinical environments, their experiences often could not have been more different. We found stark variations in how patients and caregivers described the quality of communication and patient education they received that affected their satisfaction. Satisfied patients and caregivers generally felt well informed and reported good understanding of the clinical care plan throughout the perioperative course, whereas dissatisfied patients struggled with unanswered questions, unmet information needs, and a sense of confusion throughout their care experience. CONCLUSIONS: Our study describes several unmet needs, finds inconsistencies in how information is delivered and a lack of patient-centered and caregiver-centered approaches to communication. Neurosurgery groups should identify unmet needs at their institution and implement strategies and interventions to improve the patient and caregiver experience.