"We Wanna Be Nurses Because We Want the Human Connection": Acceptability and Usability of a Person-Centered Narrative Intervention in an Acute Care Setting.

The use of narrative interventions in health care is an effective way to communicate connection between patients and clinicians. The electronic health record (EHR) is a primary mode of communicating patient information across clinical teams. Thus, incorporating a person-centered cocreated narrative with patients into the EHR is an opportunity to share a person's cultural values, beliefs, and preferences; provide connection; and foster positive patient-clinician interactions. This study of a person-centered narrative intervention was a randomized controlled trial to test intervention effects on the person's (patient) perceptions of the quality of communication with their nurses and their psychosocial and existential well-being. This article describes the clinical team's experiences and reach of the cocreated person-centered narrative integration into the patient's EHR. The data collected included (1) exit interviews (n = 14), (2) a usability survey (n = 8), and (3) data collected from the EHR for clinicians (n = 600) who accessed the uploaded narratives. Overall, the System Usability Scale and nurse participant's experiences provided confirmation that the person-centered narrative intervention was usable. There were also interprofessional groups of clinicians in the health care system who accessed the narratives. Future research should continue to identify core components and implementation strategies of EHR-integrated person-centered narratives in complex health care settings.

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

Person-centered narrative interventions offer potential solutions to facilitate a connection between the person receiving care and the person delivering the care, to improve quality of care, and positively impact a patient's biopsychosocial well-being. This single-arm feasibility study investigates patient-reported outcomes and barriers/facilitators to the implementation of an all-virtually delivered person-centered narrative intervention into the person's electronic health record. Overall, electronic data collection for the patient-reported outcomes was feasible. All 15 participants felt participating in the study was "easy" and "enjoyable," and "not a burden." The facilitators of implementation included: "helpful to the clinician," "appreciated looking at me as whole person," "be seen and heard," "had a connection and trust," and "felt comfortable and relaxing." The barriers to implementation included: "completing all the paperwork," "being rushed for time to complete the PCNI," and some "emotion" during collection of narrative. The use of person-centered narrative interventions is a way to deploy dedicated tools to shift dehumanized healthcare delivery to a more humanized person-centered care that treats people as experts in their own life narratives by incorporating their beliefs, values, and preferences into their plan of care.

Integration of Person-Centered Narratives Into the Electronic Health Record.

BACKGROUND: Care delivery that is not person-centered has been called discordant care . There has been a shift to incorporate more of a person's narrative into their individual healthcare treatment plan to reduce discordant care. Aligning with this shift in healthcare delivery, we developed a person-centered narrative intervention (PCNI) to address existing gaps in delivery of person-centered care. OBJECTIVES: This study aimed to evaluate the feasibility of conducting a randomized study and describe the outcomes of PCNI to usual care on the following person (patient)-reported outcomes: perceptions of the quality of communication with their nurses and their psychosocial and existential well-being. METHODS: This study's design was an Obesity-Related Behavioral Intervention Trials model Phase II proof-of-concept randomized study. The participants were people admitted to an acute care hospital diagnosed with heart failure and/or end-stage renal disease. RESULTS: Despite COVID-19 challenges, the PCNI was feasible in an acute care setting; it showed a moderate positive difference between conditions in the person's perception of their quality of communication and a small positive difference in their perception of feeling heard and understood. For our secondary outcomes of anxiety, depression, and psychosocial illness effect, there were small or no effects in the acute care setting. DISCUSSION: Using a person-centered narrative, such as the PCNI, can help inform delivery of care that incorporates a person's (patient's) beliefs, values, and preferences into their healthcare. This study used a pragmatic approach to evaluate the PCNI in real time in an acute care setting to assess patient-reported outcomes. These positive results in a small sample indicate the need for continued testing of the PCNI. These promising effects require further testing in a Phase III efficacy study within a larger randomized controlled clinical trial.

Experiences of dignity: Age at onset of serious illness matters.

BACKGROUND: Preserving persons' dignity is integral to nursing. More research is needed to explore how a diversity of patients, particularly those that experience illness from a young age, experience dignity. AIM: Describe the characteristics of dignity for persons living with serious illness. RESEARCH DESIGN: Using a secondary data set of twenty audio-recorded interviews, a thematic content analysis was conducted to identify characteristics of dignity. The research team employed van Gennip et al.'s, 2013 "Model of Dignity in Illness" (1) to create a codebook, which the authors utilized to independently code twenty narrative interview transcripts. PARTICIPANTS AND RESEARCH CONTEXT: Twenty persons living with serious illness of heart failure and/or dialysis-dependent renal failure who were admitted in an acute care hospital. ETHICAL CONSIDERATIONS: This study was approved on August 26, 2019, by the Colorado Multiple Institutional Review Board (COMIRB) IRB Protocol #19-1874. FINDINGS: Early-onset participants expressed markedly different dignity concerns than late-onset participants. In the individual domain, early-onset participants felt that their illness was "normal"; they did not experience the "healthy person to patient" transition described by older onset participants. In the relational domain, early-onset participants expressed that their relationships had already integrated their illness while late-onset participants felt that their illness harmed many of their relationships. In the societal domain, early-onset participants described dignity concerns related to how society impacted their ability to financially support themselves during their illness. DISCUSSION: Differences in the dignity experience of early-onset and late-onset participants are informed by Erikson's "Model of Development" and by Aranda and Jones feminist critique of dignity in healthcare. CONCLUSIONS: Persons with early-onset illness experience dignity differently. Awareness of the importance of work and financial independence to the experience of dignity for seriously ill patients may enhance persons' dignity experience.

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

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.

Essential Versus Nonessential: The Ethics of Conducting Non-COVID Research in a Population of Persons Living With Serious Illness During the COVID-19 Pandemic.

The COVID-19 pandemic has created disruptions and ethical tensions in palliative care research; however, ethical principles must continue to be applied for evaluating the safety of conducting research with seriously ill patient participants and nurse participants in an acute care setting. This randomized controlled trial is conducted in the acute care hospital and tests the effects of a narrative intervention versus usual care on the primary outcome of patients' perception of quality of communication with their nurses and the secondary outcome of biopsychosocial well-being. In accordance with local and institutional COVID-19 guidance, research activities were temporarily suspended in March 2020, and when allowed to resume, some aspects of the protocol were adapted to maximize safety for all stakeholders: patients/families, nurses, and the research team. This article (a) considers case perspectives of all stakeholders involved in a randomized controlled trial conducted in the acute care hospital setting during the COVID-19 pandemic, (b) describes the ethical dilemma and ethical principles in the context of the case, (c) discusses lessons learned while resuming clinical research activities, and (d) provides an ethical framework for the decision-making processes around vulnerability and safety in conducting research during a pandemic with persons living with serious illness.

Unpacking characteristics of spirituality through the lens of persons of colour living with serious illness: The need for nurse-based education to increase understanding of the spiritual dimension in healthcare.

AIMS AND OBJECTIVES: To examine the characteristics of spirituality as expressed by persons of colour living with serious illness. BACKGROUND: Spiritual, Religious and Existential Care, as specified in the National Consensus Project (NCP) Guidelines, is a core domain of palliative nursing. DESIGN OF THE STUDY: A constructionist approach to narrative analysis was used for this study and reported in accordance with the COREQ guideline. METHODS: In-depth narrative interviews were conducted with 20 participants. These participants included persons of colour living with serious illness who were admitted to an acute-care hospital. Through a deductive coding approach, a codebook was created based on a broad definition of spirituality including: religion, self, family, community, nature and art/music/literature. RESULTS: The major themes expressed were religion, self and family. Subthemes of religion included increased faith, support of the church community and God's intervention in patients' lives. Subthemes of self included increased self-worth, self-awareness of one's place in the world and individualised transition to new meaning in life. Subthemes of family included family adding meaning and purpose to their lives, family as an important source of strength and support, wanting to regain their health to go back to caring for their families, and believing that their illness had brought their family closer together. CONCLUSION: The thematic analysis revealed a broader existential aspect of what brought value, meaning and purpose into their lives, despite their progressive physical illness. More research is needed to understand spiritual, religious or existential needs of persons of colour living with serious illness and how nurses can best support these needs. By understanding the components of spirituality, nurses can learn to recognise the signs of spiritual distress. This awareness also helps to know when a spiritual specialist is needed-either the patient's own spiritual guide(s) or the hospital chaplain. Nurses can also use spiritual assessment tools when performing a general assessment on the patient. RELEVANCE TO CLINICAL PRACTICE: By understanding the components of spirituality, nurses can learn to recognise the signs of spiritual distress. This awareness also helps to know when a spiritual specialist is needed-either the patient's own spiritual guide(s) or the hospital chaplain. Nurses can also use spiritual assessment tools when performing a general assessment on the patient.

Effects of Physical Activity Programs on Health Outcomes of Family Caregivers of Older Adults with Chronic Diseases: A Systematic Review.

This systematic review was conducted to analyze and capture the most recent trends in physical activity interventions for family caregivers of older adults with chronic disease as found in randomized clinical trials over the last 10 years (2010-2020). We used PubMed, CINAHL, Embase, PsycInfo, and the Cochrane Library. We synthesized participants' demographics, physical activity interventions and family caregivers' health outcomes. The Cochrane Collaboration Risk of Bias Tool was used to assess risk of bias of the included studies. Sixteen studies were included and most studies (n = 11) had a moderate risk of bias. Physical activity programs with mixed modes (e.g., aerobic and resistance exercise), mixed delivery methods (e.g., in-person and telephone) and mixed settings (e.g., supervised gym-based sessions and unsupervised home-based sessions) were used most frequently. Physical activity interventions significantly improved psychological health but had inconsistent effects on physical health. This review provides current trends and research findings that suggest types of physical activity interventions and components that improve family caregivers' health and wellness.

What Mattered Then, Now, and Always: Illness Narratives From Persons of Color.

Developing solid communication-based partnerships through obtaining illness narratives allows for an understanding of patients' social resources, values, and beliefs and allows an opportunity to provide person-centered care. This study aimed to elicit cocreated illness narratives from persons of color who have serious illness. Twenty patients receiving care for serious illness were interviewed at a large academic medical center. The interviews focused on how illness affected patients' lives and were followed by formation of illness narratives. From the persons living with serious illness, 3 main themes emerged: (1) time, (2) life changes, and (3) family. Participants described how illness did influence their lifestyles and identities but did not define their personhood. Family influence had a lasting effect on participants' values and beliefs, and family presence was viewed as valuable in their current lives. Narratives from persons of color with serious illness can provide an intimate account informing nurses' understanding of patients' illness experiences and may enhance communication between nurses and patients.

Integration of Person-Centered Narratives Into the Electronic Health Record: Study Protocol.

BACKGROUND: Incorporating a patient's personal narrative into the electronic health record is an opportunity to more fully integrate the patient's values and beliefs into care, thus creating opportunities to deliver high-quality/high-value, person-centered care. OBJECTIVES: The aim of the study was to present a study protocol of a narrative intervention to (a) compare the effects of the narrative intervention to usual care on primary outcome of person's (patient) perceptions of quality of communication, (b) compare the effects of the narrative intervention on secondary outcomes of biopsychosocial well-being, and (c) examine the feasibility and acceptability of the narrative intervention from the perspective of both persons: the patient and the acute care bedside nurse. METHODS: A randomized control trial is being conducted with a targeted enrollment of 80 patient participants and 80 nurse participants. The patient participants include individuals who are admitted to the acute care hospital for either heart failure or end-stage renal disease. An acute care beside nurse who has cared for the patient participant is also enrolled. Through a 1:1 random allocation scheme, stratified by illness, we will enroll 40 in the narrative intervention group and 40 in the usual care group. Patient participants will be assessed for patient-reported outcomes of patient's perception of quality of communication and biopsychosocial well-being. RESULTS: The study began in October 2019; 53 potential patient participants have been approached, 21 have enrolled, and 20 have completed the data collection process. DISCUSSION: The testing and integration of a person-centered narrative into the electronic health record is a novel approach to provide opportunities for improvement in communication between patients and nurses. The results from this study will provide important preliminary knowledge to inform future randomized clinical trials of narrative interventions leading to advances in how to best provide high-value, high-quality, person-centered care for persons living with serious illness.