Developing Unique Insights From Narrative Responses to Bereaved Family Surveys.

Gray C, Yefimova M, McCaa M, Goebel JR, Shreve S, Lorenz KA, Giannitrapani K. Developing Unique Insights From Narrative Responses to Bereaved Family Surveys. Journal of pain and symptom management. 2020 Oct 1; 60(4):699-708.

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Abstract:

CONTEXT: Although bereaved family surveys (BFS) are routinely used quantitatively for quality assessment, open-ended and narrative responses are rarely systematically analyzed. Analysis of narrative responses may identify opportunities for improving end-of-life (EOL) care delivery. OBJECTIVES: To highlight the value of routine and systematic analysis of narrative responses and to thematically summarize narrative responses to the BFS of Veterans Affairs. METHODS: We analyzed more than 4600 open-ended responses to the BFS for all 2017 inpatient decedents across Veterans Affairs facilities. We used a descriptive qualitative approach to identify major themes. RESULTS: Thematic findings clustered into three domains: patient needs, family needs, and facility and organizational characteristics. Patient needs include maintenance of veteran's hygiene, appropriately prescribing medications, adhering to patient wishes, physical presence in patient's final hours, and spiritual and religious care at EOL. Family and caregiver needs included enhanced communication with the patient's care team, assistance with administrative and logistical challenges after death, emotional support, and displays of respect and gratitude for the patient's life. Facility and organizational characteristics included care team coordination, optimal staffing, the importance of nonclinical staff to care, and optimizing facilities to be welcoming, equipped for individuals with disabilities, and able to provide high-quality food. CONCLUSION: Systematic analysis of narrative survey data yields unique findings not routinely available through quantitative data collection and analysis. Organizations may benefit from the collection and regular analysis of narrative survey responses, which facilitate identification of needed improvements in palliative and EOL care that may improve the overall experiences for patients and families.