Literature Review

Changing the story data tells about Black health The Seattle Medium, Seattle, WA; by Joseph Williams; 1/26/26 When it comes to the health of Black Americans, the numbers don’t lie. ... Last August, Word In Black launched its Insights & Research Division, a data-focused department centered on the perspectives, priorities, and lived experiences of Black Americans. The goal is straightforward: find out what Black people think about the issues affecting them most, analyze the results, and use those insights to reshape the narrative.

"The lack of preparation compounds provider grief": Results from a needs assessment on grief training delivered to pediatric residentsClinical Pediatrics; by Erin Hickey, Erica L Jamro; 12/25Educational interventions to prepare pediatric residents to care for grieving people are rare.  Pediatric residents completed a survey conducted from March to April 2022 that assessed their experience, attitudes, skills, and knowledge of organizational support related to caring for grieving patients and families.  Despite improvements in competence with delivering difficult news with years in residency ... , only 35.7% felt competent by PGY3/4 [post-graduate year 3]. Only 19.5% of residents overall believe adequate grief support exists within their training program. Opportunities for residents to receive formal grief training are inadequate.

Palliative care in pediatric phase I oncology trials: A scoping reviewPediatric Blood & Cancer; by Andrea Cuviello, Harisankeerth Mummareddy, Alanis N. Gomez Martinez, Holly Spraker-Perlman, Allison Uber, Jordan Wrigley, Erica C. Kaye; 12/25Clinical trials, particularly Phase I trials that test drug safety and feasibility, are imperative to advance outcomes for children with cancer. These trials, however, pose risks for increased symptom burden and suffering. Early integration of palliative care (PC) during Phase I trial enrollment offers a potential reduction in suffering and improvement in quality of life.  PC integration was associated with earlier hospice enrollment, increased home and hospice deaths, decreased hospitalizations and intensive care unit utilization, improved care coordination, and better symptom management. 

Limited English proficiency and its association with quality of care and bereavement at the end of lifeAmerican Journal of Hospice & Palliative Medicine; by Maxwell D. Chen, Joan M. Teno; 12/25Of 17.1 million deaths, 5.4% occurred in Hispanic decedents, compared to 3.0% among non-Hispanics ... The strongest disparity was a 12.9-point lower adjusted quality-of-care rating for Hispanic decedents with LEP [limited English proficiency] ...  Respondents of Hispanic decedents with LEP reported trends of higher unmet needs for dyspnea palliation and receipt of goal concordant care. Conclusion: LEP is prevalent in Hispanic decedents, with those with LEP reporting lower ratings of the quality of care compared to non-Hispanics without LEP.

New voices, shared vision: How emerging research scholars are supporting HPNA's research prioritiesJournal of Hospice & Palliative Nursing; by Jyotsana Parajuli, Kristin Levoy, Avery C Bechthold, Lyndsay Degroot, C Robert Bennett, Shena Gazaway, Heather Coats; 12/25Evidence-based practice is critical to providing high-quality hospice and palliative nursing care. Professional organizations, such as the Hospice and Palliative Nurses Association (HPNA), play a critical role in shaping the future of the hospice and palliative nursing field by identifying gaps in the science and fostering collaborative research efforts to inform evidence-based practices. One such driver is the tri-annual HPNA Research Agenda, which outlines key research priorities in hospice and palliative nursing, ultimately aiming to accelerate translation of research into practice and practice improvements. In this article, 6 emerging research scholars in the field and present and former co-chairs of the HPNA Emerging Research Scholar Special Interest Group reflect on the experiences that led them to pursue research careers in hospice and palliative nursing. Through a process of collective self-assessment, these scholars articulated their shared progress toward addressing the research priorities outlined in the 2023-2026 HPNA Research Agenda as a means of generating insights to direct future research efforts in the field.

Neuropalliative care in movement disordersContinuum: Lifelong Learning in Neurology; by Benzi M Kluger; 12/25Over the past decade, significant progress has been made to advance palliative care approaches for patients with Parkinson disease and other movement disorders. This population has significant palliative care needs that are poorly met under traditional models of care, including nonmotor symptom management, advance care planning, psychosocial support, spiritual and existential support, care partner support, and timely referrals for specialist and end-of-life palliative care (hospice). Clinical trials demonstrate that specialist palliative care can improve many patient and family outcomes. Neurologists can use the five-pillars framework (nonmotor symptoms, advance care planning, psychosocial and spiritual support, care partner support, and timely involvement of specialist palliative care) to systematically address common sources of suffering that are poorly recognized in traditional models of care. This framework can be integrated into previsit screening forms and note templates to improve the detection of palliative issues.

A peer support intervention for Black family caregivers of persons living with dementia: A feasibility studyJournal of the American Geriatrics Society; by Karen O Moss, Alai Tan, Abraham A Brody, Karen Bullock, Kathy D Wright, Kimberly Johnson, Mary Beth Happ; 12/25Black family caregivers of older adults living with dementia are at high risk for physical, spiritual, and psychosocial challenges. Culturally responsive interventions are needed to address disparities in this population. The purpose of this National Institute on Aging Stage Model 1A study was to test the feasibility, acceptability, and fidelity of the Peer Support for Black Family Caregivers of Persons Living with Dementia (Pair 2 Care) intervention. Pair 2 Care is a culturally responsive, non-judgmental, flexible, co-designed virtual peer support intervention in which former caregivers are paired as peer mentors with current caregivers for 6 months.  On average, participants rated their overall Pair 2 Care satisfaction as very high (4.6/5).

Preparedness as a bridge: How religious coping shapes acceptance of death in dementia caregivingClinical Gerontologist; by L. Blake Peeples, Lauren Chrzanowski, Benjamin T. Mast; 12/25This study examined the role of religious coping and preparedness in shaping caregivers’ acceptance of death following the loss of a care recipient with Alzheimer’s disease or related dementias. Bivariate analyses indicated that both positive and negative religious coping were significantly associated with greater preparedness, and preparedness was strongly related to acceptance. Findings suggest that interventions focused on religious coping enhance preparedness which improves caregivers’ acceptance in the bereavement process.

Development of a mortality prediction model for incarcerated adults to identify palliative care needsJournal of General Internal Medicine; by W. James Deardorff, Alexandra K. Lee, Kaiwei Lu, Bocheng Jing, W. John Boscardin, Michele DiTomas, John Dunlap, Brie A. Williams, Sei J. Lee, Alexander K. Smith; 12/25The United States prison population has seen a rapid rise in the number of older adults, with roughly 14% of male prisoners and 9% of female prisoners aged 55 years or older in 2020.  Incarcerated adults experience accelerated aging, leading to reduced life expectancy and higher rates of chronic medical conditions, functional impairments, and mental health conditions compared with non-incarcerated persons. For individuals with advanced age, multimorbidity, and/or serious illness, advance care planning discussions, palliative care, and hospice services are crucial for improving quality of life and ensuring medical care that is consistent with an individual’s values and goals. As the number of incarcerated adults with limited life expectancy increases, there is a clear need for a systematic way to identify individuals who may most benefit from these services. Our 2-year mortality prediction model for adults within the California prison system performed well on measures of discrimination, calibration, and classification. The model can be used to flag individuals at higher risk for mortality for consideration of advance care planning interventions, palliative care and hospice referrals, and compassionate release.

No time like the present: End-of-life simulation in the first semester of a 12-month accelerated baccalaureate nursing programJournal of Hospice & Palliative Nursing; by Alexander T Wolf, Karen L Hunt, Maura D Penfield; 12/25Accelerated nursing programs face unique challenges in incorporating palliative care. This report describes a high-fidelity home hospice simulation developed for first-semester students in a 12-month accelerated baccalaureate nursing program in the northeastern United States. The simulation integrated foundational nursing skills with palliative care competencies. Thematic analysis of student reflections revealed 5 emerging themes: pain management, empathy, family involvement, communication, and knowledge and preparation. Despite challenges in creating a realistic home environment, the simulation provided valuable hands-on experience in palliative care, demonstrating the potential for early curricular integration of these crucial skills.