Palliative Care Research and Clinical Practice Priorities in the United States as Identified by an Interdisciplinary Modified Delphi Approach.

Background: Palliative care demands in the United States are growing amid a comparatively small workforce of palliative care clinicians and researchers. Therefore, determining research and clinical practice priorities is essential for streamlining initiatives to advance palliative care science and practice. Objectives: To identify and rank palliative care research and clinical practice priority areas through expert consensus. Design: Using a modified Delphi method, U.S. palliative care experts identified and ranked priority areas in palliative care research and clinical practice. Priorities were thematically grouped and analyzed for topic content and frequency; univariate analysis used the median of each priority item ranking, with a cutoff median of ≤8 indicating >76% agreement for an item's ranking. Results: In total, 27 interdisciplinary pediatric and adult palliative care experts representing 19 different academic institutions and medical centers participated in the preliminary survey and the first Delphi round, and 22 participated in the second Delphi round. The preliminary survey generated 78 initial topics, which were developed into 22 priority areas during the consensus meeting. The top five priorities were (1) access to palliative care, (2) equity in palliative care, (3) adequate financing of palliative care, (4) provision of palliative care in primary care settings, and (5) palliative care workforce challenges. Conclusions: These expert-identified priority areas provide guidance for researchers and practitioners to develop innovative models, policies, and interventions, thereby enriching the quality of life for those requiring palliative care services.

Early adolescent development in the face of violence: A systematic review running.

BACKGROUND: Exposure to violence has severe and lasting effects on development. Despite the body of research examining childhood exposures to violence and victimization, developmental outcomes during early adolescence are poorly understood. OBJECTIVE: To synthesize existing research on the effects of violence exposure on early adolescent development (youth 9-14 years old) and highlight areas for future research. METHOD: We conducted a systematic search of PubMed, CINAHL, Web of Science, Scopus, and EMBASE for articles published between 2012 and 2023. Included articles focused on violence exposure related to experiencing or observing community violence, witnessing domestic violence and/or being the victim of chronic physical abuse. RESULTS: Twenty-eight articles spanning four developmental domains were included: behavioral, biological, neurological, and social development. Behaviorally, violence exposure posed significant effects on both internalizing and externalizing symptoms. Biologically, violence exposure was strongly associated with advanced epigenetic age, accelerated puberty, and insomnia. Neurologically, violence exposure had significant associations with both structural and functional differences in the developing brain. Socially, violence exposure was related to poor school engagement, peer aggression, and low social support. CONCLUSION: This systematic review highlights varying effects of violence exposure on early adolescent development. The gaps presented should be addressed and implemented into clinical practice via evidence-based policies and procedures to ensure successful transition to adulthood.

Reliability and validity of the revised Rushton Moral Resilience Scale for healthcare workers.

AIM: To refine the Rushton Moral Resilience Scale (RMRS) by creating a more concise scale, improving the reliability, particularly of the personal integrity subscale and providing further evidence of validity. BACKGROUND: Healthcare workers are exposed to moral adversity in practice. When unable to preserve/restore their integrity, moral suffering ensues. Moral resilience is a resource that may mitigate negative consequences. To better understand mechanisms for doing so, a valid and reliable measurement tool is necessary. DESIGN: Cross-sectional survey. METHODS: Participants (N = 1297) had completed ≥1 items on the RMRS as part of the baseline survey of a larger longitudinal study. Item analysis, confirmatory factor analyses, reliability analyses (Cronbach's alpha), and correlations were used to establish reliability and validity of the revised RMRS. RESULTS: Item and confirmatory factor analysis were used to refine the RMRS from 21 to 16 items. The four-factor structure (responses to moral adversity, personal integrity, relational integrity and moral efficacy) demonstrated adequate fit in follow-up confirmatory analyses in the initial and hold-out sub-samples. All subscales and the total scale had adequate reliabilities (α ≥ 0.70). A higher-order factor analysis supports the computation of either subscale scores or a total scale score. Correlations of scores with stress, anxiety, depression and moral distress provide evidence of the scale's validity. Reliability of the personal integrity subscale improved. CONCLUSION AND IMPLICATIONS: The RMRS-16 demonstrates adequate reliability and validity, particularly the personal integrity subscale. Moral resilience is an important lever for reducing consequences when confronted with ethical challenges in practice. Improved reliability of the four subscales and having a shorter overall scale allow for targeted application and will facilitate further research and intervention development. PATIENT/PUBLIC CONTRIBUTION: Data came from a larger study of Canadian healthcare workers from multiple healthcare organizations who completed a survey about their experiences during COVID-19.

Feasibility of a Multi-Component Strengths-Building Intervention for Caregivers of Persons With Heart Failure.

Caregivers of persons with heart failure (HF) navigate complex care plans, yet support strategies often focus solely on meeting the needs of patients. We conducted a randomized waitlist control trial (N = 38) to test the feasibility and gauge initial effect size of the Caregiver Support intervention on quality of life, caregiver burden, and self-efficacy among HF caregivers. The intervention includes up to five remote, nurse-facilitated sessions. Components address: holistic caregiver assessment, life purpose, action planning, resources, and future planning. Caregivers were 93.3% female, 60% White, and 63.3% spouses. Average age was 59.4. Participants who completed the intervention reported high satisfaction and acceptability of activities. Between-group effect sizes at 16 and 32 weeks suggest improvement in quality of life (mental health) (.88; 1.08), caregiver burden (.31; .37), and self-efficacy (.63; .74). Caregivers found Caregiver Support acceptable and feasible. Findings contribute evidence that this intervention can enhance caregiver outcomes. Clinicaltrials.gov Identifier NCT04090749.

The Pre-implementation Process of Adapting a Culturally Informed Stress Reduction Intervention for Native American Head Start Teachers.

Head Start is a federally funded program for children (3-5 years) from low-income families. In the Fort Peck Native American Reservation, tribal Head Start teachers have reported high stress in supporting children experiencing adverse childhood experiences. Thus, we adapted the Little Holy One intervention (ClinicalTrials.gov: NCT04201184) for the teachers' context and culture to enhance psychological health and well-being. Within a participatory framework, the eight-step ADAPT-ITT methodology was used to guide the adaptation process: assessment; decision; adaptation; production; topical experts; integration; training; and testing. For Step 1, we purposive sampled 27 teachers, ancillary staff, and parents to understand teachers' stress, support mechanisms, and interest in an intervention via focus groups (n = 9) and individual interviews (n = 18). Qualitative data underscored teachers' experiences of stress, depression, and need for support (Step 1). Iterative feedback from a tribal advisory board and Little Holy One designers rendered selection of five lessons (Step 2, 5), which were adapted for the teachers via theater testing (Step 3, 4). Community capacity assessment revealed their ability to implement the intervention (Step 6). Testing of this adapted intervention in a feasibility trial (steps 7, 8) will be reported in a future publication. A rigorous systematic process within a participatory framework allowed intervention adaption based on community input. Leveraging "culture as treatment" may be useful for enhancing psychological health outcomes for Native Americans who historically underutilize existing psychological services. Supplementary Information: The online version contains supplementary material available at 10.1007/s43477-022-00070-3.

Recruitment, Retention and Intervention Delivery Experiences With Hospice Family Caregivers.

BACKGROUND: Recruitment and attrition are inherently challenging issues in hospice research. We sought to describe strategies of recruitment, retention, and delivery of NOVELA (short for telenovela), an intervention for hospice family caregivers (HFCG). METHODS: Statistics were kept of every referral, consenting participant, visit session, and intervention activity. We used the Social Marketing Mix Framework to describe recruiting strategies employed and lessons learned. RESULTS: Two hospices in the U.S. Mid-Atlantic region referred 47 HFCG and N = 20 agreed to participate, out of which 50% (N = 10) completed all 4 sessions with an average of 2.8 sessions per person, each lasting an average duration of 13.5 minutes (range 8.0-25.7). The main reason for missing a session was a patient's death (N = 8). Successful recruitment strategies employed in NOVELA included: (a) intensive start-up hospice engagement, (b) remote recruitment and delivery of NOVELA, and (c) scheduling flexibility to work around caregivers' other demands. CONCLUSION: The recruitment and intervention delivery had successes and challenges resulting in the identification of multiple opportunities to strengthen our strategy and inform future studies with HFCGs.

A mixed-methods study protocol on factors contributing to suicide clusters among Native American youth in a northern plains reservation.

Introduction: Suicide and suicide clusters within Native American Reservation communities are devastating to the entire community and increase individuals' risk for suicide over the lifespan. The objective of this paper is to describe the Indigenous community-based participatory research protocol implemented in partnership with the Fort Belknap Indian Community in Montana, United States. The study protocol was developed to understand suicide risk and protective factors, and community-derived solutions, in a reservation community with history of a suicide cluster and high rates of youth suicide. Methods: In this mixed-methods study, qualitative data from youth, adults, and service providers and quantitative data from 200 adolescents and young adults (aged 14-24 years) were collected in Fort Belknap, Montana from May - December of 2022. Qualitative data were collected first via in-depth interviews and focus groups. Survey questions included validated and pre-tested measures of factors youth experience across socio-ecological levels. Thematic analysis was applied to the qualitative data; and logistic regression models were used to examine relationships within the quantitative data. Discussion: This study will add a multi-dimensional perspective to our current understanding of (1) risk and protective factors for suicide, community-derived postvention solutions, and insights on community assets, and (2) the current health and psychosocial status of youth in the Fort Belknap community. This study may serve as an exemplar of co-created, culturally safe solutions designed to address mental health resource gaps. Next steps include development of a suicide crisis response tool kit and a culturally aligned postvention intervention that will enhance individual, family, and community survivance.

Cultural Protection from Polysubstance Use Among Native American Adolescents and Young Adults.

Reservation-based Native American youth are at disproportionate risk for high-risk substance use. The culture-as-treatment hypothesis suggests aspects of tribal culture can support prevention and healing in this context; however, the protective role of communal mastery and tribal identity have yet to be fully explored. The objectives of this study were to investigate (1) the relationship between cultural factors and high-risk substance use, which includes polysubstance use, early initiation of alcohol and illicit drugs, and binge drinking, and (2) substance use frequency and prevalence of various substances via cross-sectional design. Multiple logistic regression modeling was used to analyze data from 288 tribal members (15-24 years of age) residing on/near the Fort Peck Reservation in the Northern Plains. When controlling for childhood trauma and school attendance, having at least a high school education (OR = 0.434, p = 0.028), increased communal mastery (OR = 0.931, p = 0.007), and higher levels of tribal identity (OR = 0.579, p = 0.009) were significantly associated with lower odds of polysubstance use. Overall prevalence of polysubstance use was 50%, and binge drinking had the highest single substance prevalence (66%). Prevalence of early initiation of substances (≤ 14 years) was inhalants (70%), alcohol (61%), marijuana (74%), methamphetamine (23%), and prescription drug misuse (23%). Hydrocodone, an opioid, was the most frequently misused prescription drug. Findings indicate programs focused on promoting education engagement, communal mastery, and tribal identity may mitigate substance use for Native American adolescents living in high-risk, reservation-based settings.

Hospice Family Caregiver Perceptions of Benefits and Challenges of a Telenovela Educational Intervention.

Background: Telenovelas show significant promise as a mode of education that could potentially enhance hospice family caregivers' (HFCG) ability to manage distress or pain for themselves and the care recipient. Objectives: We sought to understand HFCGs' perceived benefits and challenges of NOVELA using the Levels of Kirkpatrick as a conceptual framework. Setting/Subjects: HFCGs from two hospices in the Mid-Atlantic region of the United States. Measurements: Semistructured interviews were conducted to understand perceptions of HFCGs on the benefits and challenges of the NOVELA intervention. Results: Participants (N = 20) in our study were mainly homebound, well educated, White female, and adult children of people with advanced cancer who reported mild anxiety and moderate self-efficacy at baseline. Three unique themes were identified: acceptability of NOVELA, usability and relevance of NOVELA, and the effect of NOVELA. According to our conceptual model, the intervention positively affects all three adult learning categories: reaction, learning, and behavior. Conclusion: Our findings suggest that HFCGs support the proposed NOVELA intervention and it appears to be an acceptable educational tool during hospice care (NCT04533594).

"We're all we got is each other": Mixed-methods analysis of patient-caregiver dyads' management of heart failure.

BACKGROUND: Individuals living with heart failure often require informal caregiving assistance for optimal self-care maintenance. The influence of caregiver burden and resilience on dyadic congruence is not well understood. OBJECTIVE: To compare how dyadic congruence is influenced by level of burden and resilience expressed by caregivers of patients with heart failure. METHODS: Mixed-methods analysis of individuals with heart failure and their caregivers, focusing on measures of caregiver burden (Zarit Burden Interview) and resilience (Brief Resilience Scale). Data were integrated using the Heart Failure Care Dyadic Typology. RESULTS: Twelve dyads (n=24 participants) were classified as Type II (n=7) and Type III (n=5) dyads. Among Type II dyads, average caregiver burden was 19.43 (± 13.89) and resilience was 3.16 (± 1.04). For Type III dyads, average caregiver burden was 3.80 (± 4.27) and resilience 4.07 (± 1.36), respectively. Two key themes were derived: 1) caregivers' tendency to take the lead, and 2) the usefulness of cognitive reframing. Data integration elucidated that theme 1 was more common among Type II dyads and those with higher burden, and theme 2 was more prevalent among Type III dyads and those with higher resilience. CONCLUSION: Findings highlight important variances in how dyads collectively manage heart failure. Future inquiry should involve tailored intervention development to bolster informal caregivers' quality of life and ability to better support patients throughout their heart failure trajectory.

Moral Injury and Moral Resilience in Health Care Workers during COVID-19 Pandemic.

Background: The 2019 coronavirus (COVID-19) pandemic placed unprecedented strains on the U.S. health care system, putting health care workers (HCWs) at increased risk for experiencing moral injury (MI). Moral resilience (MR), the ability to preserve or restore integrity, has been proposed as a resource to mitigate the detrimental effects of MI among HCWs. Objectives: The objectives of this study were to investigate the prevalence of MI among HCWs, to identify the relationship among factors that predict MI, and to determine whether MR can act as buffer against it. Design: Web-based exploratory survey. Setting/Subjects: HCWs from a research network in the U.S. mid-Atlantic region. Measurements: Survey items included: our outcome, Moral Injury Symptoms Scale-Health Professional (MISS-HP), and predictors including demographics, items derived from the Rushton Moral Resilience Scale (RMRS), and ethical concerns index (ECI). Results: Sixty-five percent of 595 respondents provided COVID-19 care. The overall prevalence of clinically significant MI in HCWs was 32.4%; nurses reporting the highest occurrence. Higher scores on each of the ECI items were significantly positively associated with higher MI symptoms (p < 0.05). MI among HCWs was significantly related to the following: MR score, ECI score, religious affiliation, and having ≥20 years in their profession. MR was a moderator of the effect of years of experience on MI. Conclusions: HCWs are experiencing MI during the pandemic. MR offers a promising individual resource to buffer the detrimental impact of MI. Further research is needed to understand how to cultivate MR, reduce ECI, and understand other systems level factors to prevent MI symptoms in U.S. HCWs.

Strategies for culturally safe research with Native American communities: an integrative review.

Background: A history of unethical research and deficit-based paradigms have contributed to profound mistrust of research among Native Americans, serving as an important call to action. Lack of cultural safety in research with Native Americans limits integration of cultural and contextual knowledge that is valuable for understanding challenges and making progress toward sustainable change. Aim: To identify strategies for promoting cultural safety, accountability, and sustainability in research with Native American communities. Method: Using an integrative review approach, three distinct processes were carried out: (1) appraisal of peer-reviewed literature (Scopus, PubMed, and ProQuest), (2) review of grey literature (e.g. policy documents and guidelines), and (3) synthesis of recommendations for promoting cultural safety. Results: A total of 378 articles were screened for inclusion, with 55 peer-reviewed and grey literature articles extracted for full review. Recommendations from included articles were synthesised into strategies aligned with eight thematic areas for improving cultural safety in research with Native American communities. Conclusions: Research aiming to understand, respect, and acknowledge tribal sovereignty, address historical trauma, and endorse Indigenous methods is essential. Culturally appropriate, community-based and -engaged research collaborations with Native American communities can signal a reparative effort, re-establish trust, and inform pragmatic solutions. Rigorous research led by Native American people is critical to address common and complex health challenges faced by Native American communities. Impact statement: Respect and rigorous methods ensure cultural safety, accountability, and sustainability in research with Native Americans.

Organizational Impact on Healthcare Workers' Moral Injury During COVID-19: A Mixed-Methods Analysis.

OBJECTIVE: The aim of this study was to explore relationships between organizational factors and moral injury among healthcare workers and the impact of perceptions of their leaders and organizations during COVID-19. BACKGROUND: COVID-19 placed healthcare workers at risk for moral injury, which often involves feeling betrayed by people with authority and can impact workplace culture. METHODS: Secondary data from a Web-based survey of mid-Atlantic healthcare workers were analyzed using mixed methods. Data were synthesized using the Reina Trust & Betrayal Model. RESULTS: Fifty-five percent (n = 328/595) of respondents wrote comments. Forty-one percent (n = 134/328) of commenters had moral injury scores of 36 or higher. Three themes emerged: organizational infrastructure, support from leaders, and palliative care involvement. Respondents outlined organizational remedies, which were organized into 5 domains. CONCLUSIONS: Findings suggest healthcare workers feel trust was breached by their organizations' leaders during COVID-19. Further study is needed to understand intersections between organizational factors and moral injury to enhance trust within healthcare organizations.

Wakȟáŋyeza (Little Holy One) - an intergenerational intervention for Native American parents and children: a protocol for a randomized controlled trial with embedded single-case experimental design.

BACKGROUND: Trauma within Native American communities compromises parents' parenting capacity; thus, increasing childrens' risk for substance use and suicide over the lifespan. The objective of this manuscript is to describe the Wakȟáŋyeza (Little Holy One) intervention and evaluation protocol, that is designed to break cycles of intergenerational trauma, suicide, and substance use among Fort Peck Assiniboine and Sioux parents and their children. METHODS: A randomized controlled trial with an embedded single-case experimental design will be used to determine effectiveness of the modular prevention intervention on parent-child outcomes and the added impact of unique cultural lesson-components. Participants include 1) Fort Peck Assiniboine and Sioux parents who have had adverse childhood experiences, and 2) their children (3-5 years). Parent-child dyads are randomized (1:1) to Little Holy One or a control group that consists of 12 lessons taught by Indigenous community health workers. Lessons were developed from elements of 1) the Common Elements Treatment Approach and Family Spirit, both evidence-based interventions, and 2) newly created cultural (intervention) and nutrition (control group only) lessons. Primary outcomes are parent (primary caregiver) trauma symptoms and stress. Secondary outcomes include: Parent depression symptoms, parenting practices, parental control, family routines, substance use, historical loss, communal mastery, tribal identity, historical trauma. Child outcomes include, externalizing and internalizing behavior and school attendance. Primary analysis will follow an intent-to-treat approach, and secondary analysis will include examination of change trajectories to determine impact of cultural lessons and exploration of overall effect moderation by age and gender of child and type of caregiver (e.g., parent, grandparent). DISCUSSION: Many Native American parents have endured adverse childhood experiences and traumas that can negatively impact capacity for positive parenting. Study results will provide insights about the potential of a culturally-based intervention to reduce parental distress - an upstream approach to reducing risk for childrens' later substance misuse and suicidality. Intervention design features, including use of community health workers, cultural grounding, and administration in Head Start settings lend potential for feasibility, acceptability, sustainability, and scalability. TRIAL REGISTRATION: ClinicalTrials.gov: NCT04201184 . Registered 11 December 2019.

Manifestations and impact of the COVID-19 pandemic in neuroinflammatory diseases.

OBJECTIVE: To report initial results of a planned multicenter year-long prospective study examining the risk and impact of COVID-19 among persons with neuroinflammatory disorders (NID), particularly multiple sclerosis (MS). METHODS: In April 2020, we deployed online questionnaires to individuals in their home environment to assess the prevalence and potential risk factors of suspected COVID-19 in persons with NID (PwNID) and change in their neurological care. RESULTS: Our cohort included 1115 participants (630 NID, 98% MS; 485 reference) as of 30 April 2020. 202 (18%) participants, residing in areas with high COVID-19 case prevalence, met the April 2020 CDC symptom criteria for suspected COVID-19, but only 4% of all participants received testing given testing shortages. Among all participants, those with suspected COVID-19 were younger, more racially diverse, and reported more depression and liver disease. PwNID had the same rate of suspected COVID-19 as the reference group. Early changes in disease management included telemedicine visits in 21% and treatment changes in 9% of PwNID. After adjusting for potential confounders, increasing neurological disability was associated with a greater likelihood of suspected COVID-19 (ORadj  = 1.45, 1.17-1.84). INTERPRETATIONS: Our study of real-time, patient-reported experience during the COVID-19 pandemic complements physician-reported MS case registries which capture an excess of severe cases. Overall, PwNID seem to have a risk of suspected COVID-19 similar to the reference population.

Sociodemographic Disparities in Access to Hospice and Palliative Care: An Integrative Review.

BACKGROUND: There is growing evidence of disparities in access to hospice and palliative care services to varying degrees by sociodemographic groups. Underlying factors contributing to access issues have received little systematic attention. OBJECTIVE: To synthesize current literature on disparities in access to hospice and palliative care, highlight the range of sociodemographic groups affected by these inequities, characterize the domains of access addressed, and outline implications for research, policy, and clinical practice. DESIGN: An integrative review comprised a systematic search of PubMed, Embase, and CINAHL databases, which was conducted from inception to March 2020 for studies outlining disparities in hospice and palliative care access in the United States. Data were analyzed using critical synthesis within the context of a health care accessibility conceptual framework. Included studies were appraised on methodological quality and quality of reporting. RESULTS: Of the articles included, 80% employed non-experimental study designs. Study measures varied, but 70% of studies described differences in outcomes by race, ethnicity, or socioeconomic status. Others revealed disparate access based on variables such as age, gender, and geographic location. Overall synthesis highlighted evidence of disparities spanning 5 domains of access: Approachability, Acceptability, Availability, Affordability, and Appropriateness; 60% of studies primarily emphasized Acceptability, Affordability, and Appropriateness. CONCLUSIONS: This integrative review highlights the need to consider various stakeholder perspectives and attitudes at the individual, provider, and system levels going forward, to target and address access issues spanning all domains.

A Call to Action to Address Disparities in Palliative Care Access: A Conceptual Framework for Individualizing Care Needs.

Palliative care is a values-driven approach for providing holistic care for individuals and their families enduring serious life-limiting illness. Despite its proven benefits, access and acceptance is not uniform across society. The genesis of palliative care was developed through a traditional Western lens, which dictated models of interaction and communication. As the importance of palliative care is increasingly recognized, barriers to accessing services and perceptions of relevance and appropriateness are being given greater consideration. The COVID-19 pandemic and recent social justice movements in the United States, and around the world, have led to an important moment in time for the palliative care community to step back and consider opportunities for expansion and growth. This article reviews traditional models of palliative care delivery and outlines a modified conceptual framework to support researchers, clinicians, and staff in evaluating priorities for ensuring individualized patient needs are addressed from a position of equity, to create an actionable path forward.

All Things Death and Dying: Health Professional Students Participating in the Death Café Model.

Death and dying remains a taboo topic in many social settings, and is underrepresented in health profession training. This report describes the use of the Death Café model as a forum for engaging students in discussion of death and dying with their peers and other health professionals. A Death Café is an opportunity for individuals to gather in an informal environment to exchange thoughts about issues associated with death, dying, loss, and illness. This report outlines the preparation, implementation, and evaluation of a Death Café event hosted at a nursing school as part of an academic health center. Twenty-four participants from five disciplines participated in discussions, reported positive experiences, and desired to learn more about issues surrounding death and dying. Findings from this event suggest that this approach may be useful for institutions seeking to provide additional learning opportunities for students and/or healthcare professionals on palliative and end-of-life care in a supportive and enabling context.