Top Ten Tips Palliative Care Clinicians Should Know About Attending to the Existential Experience.

Identifying and attending to the existential needs of persons with serious illness and their care partners are integral to whole-person palliative care (PC). Yet, many PC clinicians, due to individual factors and wider systemic barriers, are ill-prepared and under-resourced to navigate the existential dimension. In this article, written from clinical, research, and lived experiences, we offer tips to empower PC clinicians to understand, recognize, and respond to patients' and care partners' existential experiences by leveraging their existing skills, collaborating closely with colleagues, exploring their own existential experience, and implementing evidence-based interventions. We propose that by prioritizing existential care within PC, we can shift the culture of health care to better affirm the humanity of both patients and clinicians.

The Listening Guide: Illustrating an underused voice-centred methodology to foreground underrepresented research populations.

AIM: To highlight the value of utilizing the Listening Guide methodology for nursing research and provide an exemplar applying this methodology to explore a novel concept in an underrepresented group-inner strength in persons newly diagnosed with mild cognitive impairment along with their care partners. DESIGN: Methodology discussion paper. METHODS: The exemplar study used the Listening Guide methods for data elicitation and analysis. Methods included adaptations for the study population and novice qualitative researchers. RESULTS: The Listening Guide methodology with adaptations enabled the research team to centre the voices of persons living with mild cognitive impairment, highlight an abstract phenomenon and attend to the influences of the sociopolitical context. Further, this methodology helped address common challenges emerging qualitative researchers encounter, including understanding methods of application, engaging reflexively and immersing in the data. CONCLUSION: The Listening Guide is a voice-centred qualitative methodology that is well suited to foreground the experiences of groups underrepresented in research and explore emerging phenomena. IMPLICATIONS FOR NURSING: Nurses are central to striving for health equity. The Listening Guide methodology offers a valuable and accessible research tool to understand the experiences and needs of underrepresented groups and shape healthcare in response. IMPACT: The Listening Guide methodology can be broadly applied to research with persons with mild cognitive impairment, and other underrepresented groups, to explore other phenomena beyond inner strength and move the science forward in representing the perspectives of groups underrepresented by research. PATIENT OR PUBLIC CONTRIBUTION: Persons living with cognitive impairment and their care partners participated in study conceptualization, interview guide development, methods development and dissemination plans.

Time out weekly smile: A pilot test of a virtual respite program.

Respite care provides alternative care for persons living with dementia (PLWD) and is intended to alleviate the burden of caregiving. However, the evaluation of respite programs is limited. Time Out Weekly Smile (TOWS) is a virtual intergenerational respite care program designed to meet the needs of PLWD and their care partners and provide allied health students opportunities to serve as respite volunteers. This multi-method pilot study aimed to evaluate the experience of TOWS participation for all (i.e., care partners, PLWD, students) and identify outcomes of interest for future efficacy studies. Semi-structured interviews with all participants after experiencing TOWS were analyzed using conventional content analysis methods and student surveys of dementia attitudes were summarized. Results demonstrated lasting mutual benefits for all participants including social connection and creating meaning. Our findings suggest that including all respite care participants in future efficacy studies will elucidate the wide impact of respite care programs.

Bridging the gap: Palliative care integration into survivorship care.

As the number of cancer survivors grows, there is an increasing need for comprehensive care to address the unique physical, psychological, and social needs of this population. Palliative care (PC) integration within survivorship care offers a promising model of care, however, there is no comprehensive review of literature to guide clinical practice. This manuscript presents a scoping review of the research literature on models of care that integrate PC with survivorship care, as well as a detailed description of an exemplar clinical model. We identified 20 articles that described various models of survivorship care with integrated PC, highlighting the diversity of approaches and the multidisciplinary nature of interventions. Few studies reported outcomes but those that did demonstrated improvements in pain, self-efficacy, depression, function, and documentation of advance care planning. The evidence base remains limited, indicating the need for further research in this area with a focus on exploring outcomes using prospective experimental designs. Future clinical practice and research should explore sustainable payment models and the implementation of integrated survivorship care in value-based payment systems.

Existential Care in Daily Nursing Practice.

ABSTRACT: Relationship-centered palliative nursing during serious illness requires existential care. Yet, multilevel systemic barriers hinder nurses' ability to provide this care. The authors suggest ways to navigate these barriers, highlighting existential care priorities that nurses can attend to in their daily practice. These include 1) maintaining a strengths-based orientation, 2) taking a life course perspective, 3) grounding care firmly in relationships, and 4) responding moment to moment. They propose that by emphasizing existential care in palliative nursing, we can create a more compassionate and human-centered health system.

An integrative review of measures of transitions and care coordination for persons living with dementia and their caregivers.

Introduction: High rates of hospital visits and readmissions are common among persons living with dementia, resulting in frequent transitions in care and care coordination. This paper identifies and evaluates existing measures of transitions and care coordination for persons living with dementia and their caregivers. Methods: This integrative review builds off a prior review using a systematic search of online databases (PubMed, EBSCO, CINAHL, PsycInfo, and Scopus) to identify records and locate reports (or articles) that use measures of care transitions and care coordination. Identified measures were compared to the Alzheimer's Association's Dementia Care Practice Recommendations to evaluate strengths and weaknesses of the measure in this population, such as if measures were person- and family-centered. Results: Seventy-one reports using measures of transitions in care and care coordination for persons living with dementia and their caregivers were identified. There were multiple measures identified in some reports. Three main areas of measures were classified into: identification of the population (3 measures, 8 reports), transitional care and care coordination delivery (14 measures, 17 reports), and transitional care and care coordination outcomes (e.g., health-care use, cost, and mortality; 17 measures, 60 reports). A strength of the three main areas of measures was that a portion of the measures were person- and family-centered. Variability in the operational definitions of some measures and time intensiveness of collecting the measure (e.g., number of items, the time it takes to complete the items) were common weaknesses. Discussion: Transitions and care coordination measures are varied across studies targeted at persons living with dementia and their caregivers. Existing measures focus heavily on outcomes, specifically health-care resource use, and cost, rather than the elements of transitional care or care coordination. Future measure development focused on care transitions and service coordination is needed.

Evaluation of an educational conference for persons affected by hereditary frontotemporal degeneration and amyotrophic lateral sclerosis.

Objective: There are limited studies exploring the support and education needs of individuals at-risk for or diagnosed with hereditary frontotemporal degeneration (FTD) and/or amyotrophic lateral sclerosis (ALS). This study evaluated a novel conference for this population to assess conference efficacy, probe how participants assessed relevant resources, and identify outstanding needs of persons at-risk/diagnosed. Methods: We implemented a post-conference electronic survey that probed participants' satisfaction, prior experience with resources, and unmet needs. Along with multiple-choice, free-text items were included to gather qualitative context. Results: Survey completion rate was 31% (115/376 attendees who were emailed the survey). There was positive interest in pursuing genetic counseling among eligible responders: 61% indicated they planned to seek genetic counseling because of the conference, which was significantly more than those who were undecided (21%) or did not plan to seek genetic counseling (18%). Qualitative data demonstrated need for additional education, support, and research opportunities. Conclusion: Conference reactions indicate this is a valued resource. Results indicated the importance of raising awareness about existing resources, and the need for further resource development, especially for at-risk communities. Innovation: While most resources are developed for caregivers' needs, this unique program targets at-risk individuals and unites ALS and FTD communities.

The study protocol to evaluate implementation of the transitional care model in four U.S. healthcare systems during the Covid-19 pandemic.

This study protocol describes the conceptual framework, design, and methods being employed to evaluate the implementation of the Transitional Care Model (TCM) as part of a randomized controlled trial. The trial, designed to examine the health and cost outcomes of at-risk hospitalized older adults, is being conducted in the context of the COVID-19 pandemic. This parallel study is guided by the Practical, Robust, Implementation and Sustainability Model (PRISM) and uses a fixed, mixed methods convergent parallel design to identify challenges encountered by participating hospitals and post-acute and community-based providers that impact the implementation of the TCM with fidelity, strategies implemented to address those challenges and the relationships between challenges, strategies, and rates of fidelity to TCM's core components over time. Prior to the study's launch and throughout its implementation, qualitative and quantitative data related to COVID and non-COVID challenges are being collected via surveys and meetings with healthcare system staff. Strategies implemented to address challenges and fidelity to TCM's core components are also being assessed. Analyses of quantitative (established metrics to evaluate TCM's core components) and qualitative data (barriers and facilitators to implementation) are being conducted independently. These datasets are then merged and interpreted together. General linear and mixed effects modeling using all merged data and patients' socio-demographic and social determinants of health characteristics, will be used to examine relationships between key variables and fidelity rates. Implications of study findings in the context of COVID-19 and future research opportunities are suggested. Trial registration: ClinicalTrials.gov Identifier: NCT04212962.

Feasibility and acceptability of a web-based advance care plan for dementia.

While advance care planning (ACP) can help elicit preferences and is associated with improved end-of-life outcomes, persons living with dementia (PLWD) in nursing homes are rarely included in ACP. Web-based decision aids are a readily available tool to engage PLWD in ACP, but none are designed for the unique needs of PLWD, particularly those residing in nursing homes. Our Memory Care Wishes (OMCW) was adapted from a publicly available web-based ACP tool in collaboration with dementia care experts. This study aimed to explore the acceptability of OMCW. We used a convergent, mixed methods design to describe PLWD and surrogates' experiences using the OMCW website. Participants described ease of use, comfort with viewing, helpfulness for planning, and likelihood to recommend. Overall, OMCW is acceptable, however, PLWD continue to have difficulties understanding and engaging with some website content. Modifications were incorporated based on these findings, setting the stage for implementation and effectiveness testing.

Opportunities for Poetic Analysis in Qualitative Nursing Research.

BACKGROUND: The voices of people living with serious, life-limiting illnesses are often underrepresented in research. Furthermore, a biomedical bias toward treatment and stigma associated with illness prevents healthcare providers from engaging with topics critical for people living with serious illness, such as existential communication and inner strength. Poetry is an established method of analysis and dissemination in qualitative research but is underutilized by nursing researchers. OBJECTIVES: The purpose of this article is to demonstrate the inherent opportunities in using poetry in nursing research to highlight the voices and issues of people whose experiences are outside the assumed norms of the biomedical paradigm. METHODS: We apply methods of poetic analysis to qualitative data sets that highlight the voice of people living with serious illness-in naturally occurring palliative care conversations and dyadic interviews of people with dementia and their care partners. Methods of poetic analysis include poetic transcription and voice poems. RESULTS: Methods of poetic analysis allowed us to engage with the data reflexively to intensify and evoke the deeper meaning of narratives. Poetic analysis served to center the participant's voices by using their own words to demonstrate themes. Poems are a uniquely accessible method of disseminating complex findings, as poems relay layered cognitive and emotional meaning resonant of universal human experiences in a concise and relatable format. DISCUSSION: Especially in circumstances where participant's voices are underrepresented, poetic analysis enables nurse researchers to challenge normative assumptions and reimagine a difference-centered society. Our findings offer opportunities to incorporate poetry into clinical and research nursing training to better meet the needs of the populations we serve.

The Oncology Nurse Navigator as "Gate Opener" to Interdisciplinary Supportive and Palliative Care for People with Head and Neck Cancer.

BACKGROUND: People living with head and neck cancer frequently encounter challenges in their treatment with multimodality therapy and risk of side effects. Ensuring access to and use of interdisciplinary supportive and palliative care is often challenging given the complex needs and unfamiliar treatment experiences. OBJECTIVES: Describe the CARE Clinic Plus ONN Gate Opener as an approach to enhance access to and utilization of interdisciplinary supportive and palliative care for people living with head and neck cancer. DISCUSSION: The Cancer Appetite and Rehabilitation (CARE) Clinic model offers interdisciplinary supportive and palliative care to patients at risk, including those living with head and neck cancer. The oncology nurse navigator (ONN) serves as gate opener, ensuring that those individuals receive appropriate assessment with personalized education and referrals for timely prehabilitation, rehabilitation, and palliation. CONCLUSIONS: The ONN, as a gate opener for people living with head and neck cancer, offers an innovative approach to elevate the patient experience and improve clinical outcomes through interdisciplinary supportive and palliative care when working in collaboration with the CARE Clinic. Guidance for other centers to adapt our model to meet their patient and family needs concludes our discussion.

A dimensional analysis of inner strength in people ageing with serious illness.

Nursing models of care show promise in addressing the needs of older adults facing serious illness through supporting inner strength. However, previous conceptual and theoretical models of inner strength are limited. This concept analysis used dimensional analysis methods to explore inner strength in people ageing with serious illness to address limitations by defining a pragmatic, data-driven model. This study analyzed published literature of adults with serious illness that describes inner strength. Thirty articles were selected after review. The result was an explanatory matrix that describes inner strength from the perspective of where have I been, where am I going? within the context of being a person who is living and dies and you have a serious illness. The conditions spotlighting by actors around me and taking stock of others and ideas lead to processes of looking in/looking out and seeing me as I'm seen. The final consequence of this process is meeting me. This updated concept analysis of inner strength improves upon previous models by providing a clinically relevant situation-specific model of inner strength for people with serious illness. Implications for nursing scholarship and practice are described including exploration of person-centered care, relational practice, and health communication.

Clinician-Targeted Mobile Apps in Palliative Care: A Systematic Review.

BACKGROUND: The availability of smartphone applications has increased rapidly including applications related to palliative care. The scope of these available apps has not been synthesized. OBJECTIVE: The purpose of this study was to identify and review available palliative care-related smartphone applications for clinicians. DESIGN: Smartphone application platform stores, for example, App Store iOS, Google Play Store, Windows App-Microsoft Store, and Blackberry World App store were searched (December 2016) using relevant key words. RESULTS: Forty-six palliative care applications targeting clinicians were identified, including clinical guidelines (n = 17), advance care planning (n = 9), training materials in palliative care (n = 7), and pharmaceutical tools (n = 7), and platforms for distributing current palliative care news, articles, and opinions (n = 6). The majority of the applications were free and available in English. The most common platforms were Android and iOS. CONCLUSIONS: The number of palliative care apps targeting clinicians has increased dramatically for the past five years. However, many apps did not report adequate information to judge the evidence upon which the apps were based.