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

Abstract

Background In the health care setting, electronic health records (EHRs) are one of the primary modes of communication about patients, but most of this information is clinician centered. There is a need to consider the patient as a person and integrate their perspectives into their health record. Incorporating a patient’s narrative into the EHR provides an opportunity to communicate patients’ cultural values and beliefs to the health care team and has the potential to improve patient-clinician communication. This paper describes the protocol to evaluate the integration of an adapted person-centered narrative intervention (PCNI). This adaptation builds on our previous research centered on the implementation of PCNIs. The adaptation for this study includes an all-electronic delivery of a PCNI in an outpatient clinical setting. Objective This research protocol aims to evaluate the feasibility, usability, and effects of the all-electronic delivery of a PCNI in an outpatient setting on patient-reported outcomes. The first objective of this study is to identify the barriers and facilitators of an internet-based–delivered PCNI from the perspectives of persons living with serious illness and their clinicians. The second objective is to conduct acceptability, usability, and intervention fidelity testing to determine the essential requirements for the EHR integration of an internet-based–delivered PCNI. The third objective is to test the feasibility of the PCNI in an outpatient clinic setting. Methods Using a mixed method design, this single-arm intervention feasibility study was delivered over approximately 3 to 4 weeks. Patient participant recruitment was conducted via screening outpatient palliative care clinic schedules weekly for upcoming new palliative care patient visits and then emailing potential patient participants to notify them about the study. The PCNI was delivered via email and Zoom app. Patient-reported outcome measures were completed by patient participants at baseline, 24 to 48 hours after PCNI, and after the initial palliative care clinic visit, approximately 1 month after baseline. Inclusion criteria included having the capacity to give consent and having an upcoming initial outpatient palliative care clinic visit. Results The recruitment of participants began in April 2021. A total of 189 potential patient participants were approached via email, and 20 patient participants were enrolled, with data having been collected from May 2021 to September 2022. A total of 7 clinician participants were enrolled, with a total of 3 clinician exit interviews and 1 focus group (n=5), which was conducted in October 2022. Data analysis is expected to be completed by the end of June 2023. Conclusions The findings from this study, combined with those from other PCNI studies conducted in acute care settings, have the potential to influence clinical practices and policies and provide innovative avenues to integrate more person-centered care delivery. International Registered Report Identifier (IRRID) DERR1-10.2196/41787

Use of a Person-Centered Narrative Intervention in an Outpatient Palliative Care Setting: A Feasibility Study

“…Further details of the PCNI intervention, study design, recruitment process, and data collection can be found in our previously published work, “An Electronically Delivered Person-Centered Narrative Intervention for Persons Receiving Palliative Care: Protocol for a Mixed Methods Study”. 11 …”

“…5 - 7 , 9 - 11 Therefore, the innovative use of the integration of a cocreated person-centered narrative into that person's EHR is a potential solution to facilitate a connection between persons receiving care (patients) and the persons delivering the care (clinicians) and positively impact a person's psychosocial well-being. 9 - 11 …”

“…Our person-centered narrative intervention is a cocreated document based on the narrative interview with persons living with serious illnesses, written in first person (patient voice), and then after approval from the patient, the document is uploaded into that patient's EHR. [9][10][11] Furthermore, in the population of persons living with serious illness, the use of narratives has been able to reduce psychological illness impact and positively contributes to the person' quality of life. [5][6][7][9][10][11] Therefore, the innovative use of the integration of a cocreated person-centered narrative into that person's EHR is a potential solution to facilitate a connection between persons receiving care (patients) and the persons delivering the care (clinicians) and positively impact a person's psychosocial well-being.…”

“…[9][10][11] Furthermore, in the population of persons living with serious illness, the use of narratives has been able to reduce psychological illness impact and positively contributes to the person' quality of life. [5][6][7][9][10][11] Therefore, the innovative use of the integration of a cocreated person-centered narrative into that person's EHR is a potential solution to facilitate a connection between persons receiving care (patients) and the persons delivering the care (clinicians) and positively impact a person's psychosocial well-being. [9][10][11] Prior to the COVID-19 pandemic, our program of personcentered narrative intervention studies was delivered in-person and in acute care settings 9 ) or in a person's home in the community.…”

“…[5][6][7][9][10][11] Therefore, the innovative use of the integration of a cocreated person-centered narrative into that person's EHR is a potential solution to facilitate a connection between persons receiving care (patients) and the persons delivering the care (clinicians) and positively impact a person's psychosocial well-being. [9][10][11] Prior to the COVID-19 pandemic, our program of personcentered narrative intervention studies was delivered in-person and in acute care settings 9 ) or in a person's home in the community. 12 One of the main findings of our earlier studies was that PCNI provided opportunities for "connection" between the clinician and the person needing care.…”