ABSTRACT
Early in the COVID-19 pandemic restricted family presence in hospitals was a widespread public health intervention to preserve critical resources and mitigate the virus's spread. In this study, we explore the experiences of surgical care providers and family members of hospitalized surgical patients during the period of highly restricted visiting (March 2020 to April 2021) in a large Canadian academic hospital. Thirty-four interviews were completed with hospital providers, family members and members of the hospital's visitor task force. To understand hospital providers' experiences, we highlight the ethical tensions produced by the biomedical and public health ethics frameworks that converged during COVID-19 in hospital providers' bedside practice. Providers grappled with mixed feelings in support of and against restricted visiting, while simultaneously experiencing gaps in resources and care and acting as patient gatekeepers. To understand family members' experiences of communication and care, we use the theory of institutional betrayal to interpret the negative impacts of episodic and systemic communication failures during restricted visiting. Family members of the most vulnerable patients (and patients) experienced short- and long-term effects including anxiety, fear, and refusal of further care. Our analysis draws attention to the complex ways that hospital care providers and families of hospitalized surgical patients sought to establish and reconfigure how trust and patient-centeredness could be achieved under these unprecedented conditions. Practical learnings from this study suggest that if family presence in hospitals must be limited in the future, dedicated personnel for communication and emotional support for patients, families and staff must be prioritized.
ABSTRACT
IMPORTANCE: Patients with head and neck cancer manage a variety of symptoms at home on an outpatient basis. Clinician review alone often leaves patient symptoms undetected and untreated. Standardized symptom assessment using patient-reported outcomes (PROs) has been shown in randomized clinical trials to improve symptom detection and overall survival, although translation into real-world settings remains a challenge. OBJECTIVE: To better understand how patients with head and neck cancer cope with cancer-related symptoms and to examine their perspectives on standardized symptom assessment. DESIGN, PARTICIPANTS, AND SETTING: This was a qualitative analysis using semistructured interviews of patients with head and neck cancer and their caregivers from November 2, 2020, to April 16, 2021, at a regional tertiary center in Canada. Purposive sampling was used to recruit a varied group of participants (cancer subsite, treatment received, sociodemographic factors). Drawing on the Supportive Care Framework, a thematic approach was used to analyze the data. Data analysis was performed from November 2, 2020, to August 2, 2021. MAIN OUTCOMES AND MEASURES: Patient perception of ambulatory symptom management and standardized symptom assessment. RESULTS: Among 20 participants (median [range] age, 59.5 [33-74] years; 9 [45%] female; 13 [65%] White individuals), 4 themes were identified: (1) timely physical symptom management, (2) information as a tool for symptom management, (3) barriers to psychosocial support, and (4) external factors magnifying symptom burden. Participants' perceptions of standardized symptom assessment varied. Some individuals described the symptom monitoring process as facilitating self-reflection and symptom detection. Others felt disempowered by the process, particularly when symptom scores were inconsistently reviewed or acted on. CONCLUSIONS AND RELEVANCE: This qualitative analysis provides a novel description of head and neck cancer symptom management from the patient perspective. The 4 identified themes and accompanying recommendations serve as guides for enhanced symptom monitoring.