An Electronically Delivered Person-Centered Narrative Intervention for Persons Receiving Palliative Care: Protocol for a Mixed Methods Study (Preprint)

Abstract

BACKGROUND In the health care setting, the electronic health record (EHR) is one of the primary modes of communication about patients, but most of this information is provider-centered. There is a need to integrate more of the patient as person into the patient’s health record. Incorporating a patient’s narrative into the EHR provides an opportunity to communicate patients’ cultural values/beliefs to the healthcare team and has the potential to improve patient-clinician communication. OBJECTIVE This research protocol aims to evaluate the feasibility, usability and effects on patient-reported outcomes of an all virtually delivered person-centered narrative intervention in an outpatient setting. METHODS Using a mixed method design, this single arm intervention feasibility study is delivered over approximately 1-2 weeks. The person-centered narrative intervention (PCNI) is delivered via e-mail contact and zoom. Patient reported outcome measures are completed by patient participants at baseline, 24-48 hours after PCNI, and after the initial palliative care clinic visit, approximately 1 month after baseline. Inclusion criteria includes capacity to consent and having an upcoming initial outpatient palliative care clinic visit. RESULTS The recruitment of participants began in April 2021. Patient participant recruitment is being conducted via screening outpatient palliative care clinic schedules weekly for upcoming new palliative care patient visits, and e-mails sent to potential patient participants of their eligibility to enroll in study. Data collection and data analysis is expected to conclude by end of 2023. CONCLUSIONS If proven feasible, the use of PCNI could provide care delivery, in an outpatient setting, that is more person-centered, even when the PCNI is delivered in all electronic delivery. The findings from this study, joined with findings from other PCNI intervention studies conducted in acute care settings, have the potential to influence clinical practices and policies providing innovative avenues to integrate more person-centered care delivery. CLINICALTRIAL N/A