Comparison between Rural and Urban Appalachian Children in Hospice Care.

OBJECTIVE: The goal of this study was to compare rural and urban pediatric hospice patients in Appalachia. METHODS: Using a retrospective, nonexperimental design, we sought to compare characteristics of Appalachian rural and urban children younger than 21 years enrolled in the Medicaid hospice benefit. Descriptive statistics were calculated on the demographic, hospice, and clinical characteristics of children from Appalachia. Comparisons were calculated using Pearson χ2 for proportions and the Student t test for means. RESULTS: Less than half of the 1788 Appalachian children admitted to hospice care resided in rural areas (40%). Compared with children in urban areas of Appalachia, rural children were significantly younger (8 years vs 9.5 years) and more often had a complex chronic condition (56.0% vs 35.1%) and comorbidities (38.5% vs 17.0%) with technology dependence (32.6% vs 17.0%). Children in rural Appalachian were commonly from communities in the southern region of Appalachia (27.9% vs <10.0%), with median household incomes <$50,000/year (96.7% vs 22.4%). Significant differences were present in clinical care between rural and urban Appalachian children. Rural children had longer lengths of stay in hospice care (38 days vs 11 days) and were less likely to use the emergency department during hospice admission (19.0% vs 43.0%). These children more often visited their primary care provider (49.9% vs 31.3%) and sought care for symptoms from nonhospice providers (18.1% vs 10.0%) while admitted to hospice. CONCLUSIONS: Our results suggest that children admitted to hospice care in rural versus urban Appalachia have distinct characteristics. Rural children are admitted to hospice care with significant medical complexities and reside in areas of poverty. Hospice care for rural children suggests a continuity of care with longer hospice stays and fewer transitions to the emergency department; however, the potential for care fragmentation is present, with frequent visits to primary care and nonhospice providers for symptom management. Understanding the unique characteristics of children in Appalachia may be essential for advancing knowledge and care for these children at the end of life. Future research examining geographic variation in hospice care in Appalachia is warranted.

The relationship between the nursing environment and delivering culturally sensitive perinatal hospice care.

BACKGROUND: Wide variations exist among perinatal hospices, and barriers to perinatal palliative care exist at the healthcare level. Research in the area of culturally sensitive perinatal palliative care has been scarce, a gap which this study addresses. OBJECTIVE: To evaluate the relationship between the nurse work environment and the delivery of culturally sensitive perinatal hospice care. METHOD: This retrospective, correlational study used data from the National Home and Hospice Care Survey, which includes a nationally representative sample of hospice care providers. A multivariate logistic regression model was used to estimate the relationship between the delivery of culturally sensitive care and the nurse work environment. RESULTS: Accreditation, teaching status, and baccalaureate-prepared registered nurse staff had an impact on the provision of culturally sensitive perinatal care Conclusions: The hospice and nursing unit environments, specifically in regards to education and technology, may be important contributors to the delivery of culturally sensitive care.

Top Ten Tips Palliative Clinicians Should Know About Rural Palliative Care in the United States.

Palliative care improves outcomes, yet rural residents often lack adequate and equitable access. This study provides practical tips to address palliative care (PC)-related challenges in rural communities. Strategies include engaging trusted community partners, addressing cultural factors, improving pediatric care, utilizing telehealth, networking with rural teams including caregivers, and expanding roles for nurses and advanced practice providers. Despite complex barriers to access, providers can tailor PC to be patient-centered, respect local values, and bridge gaps. The "Top 10" format emphasizes the relevant issues to enable clinicians to provide optimal care for people from rural areas.

A comparison of the nurse work environment between perinatal and non-perinatal hospice providers.

BACKGROUND: Hospice nurses have a unique role in providing perinatal care, yet little is known about the work environment in which nurses provide care for families and infants at the end of life. OBJECTIVE: To compare the nurse work environment between perinatal and non-perinatal hospices. METHODS: Data from the 2007 US National Home and Hospice Care Survey was used. The sample included 526 US hospice agencies. Comparisons were calculated using the Pearson chi-square and Wald tests. RESULTS: A majority of hospices provided perinatal care (60%). Compared with non-perinatal hospices, the perinatal nurse work environment had a significantly higher proportion of registered nurses (mean 0.87 vs mean 0.79), along with clinical nurse specialists and nurse practitioners to support them (95.6% vs 84.9%). Nurses within perinatal care providers worked in a climate of significantly greater safety (95.6% vs 84.9%) and technology (63.7% vs 47.1%). CONCLUSIONS: Understanding the unique perinatal hospice nurse work environment may be essential for advancing knowledge and compassion for mothers and babies at the end of life.

Conceptualizing the Value of Pediatric Concurrent Hospice Care.

Given that pediatric concurrent hospice care has been available for more than a decade, it is appropriate to seek an understanding of the value of this care delivery approach. Value is the cost associated with achieving beneficial health outcomes. In pursuit of this goal, the current literature on pediatric concurrent hospice care was synthesized and used to develop a model to explain its value. Because of its relevance, the Value Assessment Framework was used to conceptualize the value of pediatric concurrent hospice care. This framework gauges the value of a health care service through 2 components: long-term effect and short-term affordability. The framework considers comparative clinical effectiveness, cost-effectiveness, other benefits or disadvantages, contextual considerations, and potential budget impact. Evidence from the literature suggested that the value of concurrent care depended on clinical outcomes evaluated, costs examined, medical services used, care coordinated, context considered, and budget impacted. The literature demonstrated that pediatric concurrent hospice care does offer significant value for children and their families. The conceptual model highlighted the need for a comprehensive approach to assessing value. The model is a useful framework for future research examining the value of concurrent hospice care.

Impact of Concurrent Hospice Care on Primary Care Visits Among Children in Rural Southern Appalachia.

INTRODUCTION: The purpose of the study was to test the effect of receiving pediatric concurrent hospice care on primary care visits. METHOD: This retrospective study was limited to pediatric decedents younger than 21 years with a hospice service claim from 2011 to 2013. Our outcome of interest concerned whether concurrent hospice care impacted primary care visits. RESULTS: Of the 460 pediatric decedents in rural Southern Appalachia, 42% continued to visit their primary care provider during hospice enrollment, whereas 51% received concurrent hospice care. Concurrent hospice care was significantly related to pediatric primary care visits (ß = 2.31; p < .001). DISCUSSION: Findings revealed that receipt of concurrent hospice care impacted primary care. Children in concurrent care were twice as likely to continue to receive care from their primary care provider. This finding is consistent with our hypothesis; however, the magnitude of the finding was unexpected given their residence in medically underserved areas.

Pediatric End-of-Life Care in Rural America: A Systematic Review.

BACKGROUND: Families increasingly desire to bring their children home from the acute care setting at end of life. This transition includes home to rural or remote areas. Little is known about the end-of-life care for children who reside in rural areas. OBJECTIVE: The purpose of this study was to comprehensively review and summarize the evidence regarding end-of-life care for children living in rural areas, identify key findings and gaps in the literature, and make recommendations for future research. METHODS: A systematic review was conducted from 2011 to 2021 using MEDLINE and CINAHL databases. RESULTS: Nine studies met inclusion criteria. Key themes from the literature included: barriers, facilitators, and needs. Three articles identified barriers to end-of-life care for children in rural communities, which included access to end-of-life care and clinicians trained to provide pediatric care. Three studies identified and evaluated the facilitators of end-of-life care for rural children. The articles identified technology and additional training as facilitators. Four studies reported on the needs of rural children for end-of-life care with serious illness. CONCLUSIONS: We found major barriers and unmet needs in the delivery of rural pediatric end-of-life care. A few facilitators in delivery of this type of care were explored. Overall research in this area was sparse. Future studies should focus on understanding the complexities associated with delivery of pediatric end-of-life care in rural areas.

A National Study to Compare Effective Management of Constipation in Children Receiving Concurrent Versus Standard Hospice Care.

Constipation is a distressing and uncomfortable symptom children experience at end of life. There is a gap in knowledge about how different approaches to hospice care delivery might improve pediatric symptom management of constipation. The purpose of this study was to evaluate the effectiveness of pediatric concurrent hospice versus standard hospice care to manage constipation. Medicaid data (2011-2013) were analyzed. Children who were younger than 21 years enrolled in hospice care and had a hospice enrollment between January 1, 2011, and December 31, 2013, were included. Instrumental variable analysis was used to test the effectiveness of concurrent versus standard hospice care. Among the 18 152 children, approximately 14% of participants were diagnosed or treated for constipation from a nonhospice provider during hospice enrollment. A higher proportion of children received nonhospice care for constipation in concurrent hospice care, compared with standard hospice (19.5% vs 13.2%), although this was not significant (ß = .22, P < .05) after adjusting for covariates. The findings demonstrated that concurrent care was no more effective than standard hospice care in managing pediatric constipation. Hospice and nonhospice providers may be doing a sufficient job ordering bowel regimens before constipation becomes a serious problem for children at end of life.

Families' Decision Making at End of Life in Rural Appalachia.

Caring for persons at the end of life has dramatically changed in the last 20 years. Improved chronic illness management and aggressive life-sustaining measures for once-fatal illnesses have significantly increased longevity. People with life-limiting illnesses and their families are asked to make complex and difficult decisions about end-of-life, palliative, and hospice care. The purpose of this study was to discover and describe the culture care expressions, patterns, and practices influencing rural Appalachian families making decisions at the end of life. The qualitative, ethnonursing research method was used to analyze data from 25 interviews. The 4 themes discovered provide insights that could help improve this underserved population's access to palliative and hospice care, which in turn could help them experience a dignified death. Recommendations for health care providers could help reduce rural Appalachians' health disparities and promote meaningful, culturally congruent end-of-life care.

Using partnerships to advance nursing practice and education: the precious prints project.

With the release of the Institute of Medicine's (2011) Future of Nursing report, nursing leaders recognized that strong academic-practice partnerships are critical to advancing the report's recommendations. Using established principles for academic-practice partnerships, a manufacturer, children's hospital, student nurses organization, and college of nursing created the Precious Prints Project (P(3)) to give families who have experienced the death of a child a sterling silver pendant of the child's fingerprint. This article outlines the background, implementation, and benefits of the P(3) partnership with the aim of encouraging readers to consider how similar programs might be implemented in their organizations. To date, the program has given pendants to more than 90 families. In addition, nurses and nursing students have been introduced to the provision of a tangible keepsake for families experiencing the loss of a child and participation in philanthropy and an academic practice partnership.

Developing a perinatal memory-making program at a children's hospital.

Most pregnancies are a time of joy and anticipation, but unfortunately there are families who instead suffer one of life's most difficult events: a perinatal loss. Although grief processes have some common aspects, grief over a child can be especially intense, and those grieving such a loss have unique needs. One of the things that nurses can do to assist families in these situations is to assist them by creating memories of their child to help ease perinatal grief. This article describes the Precious Prints Project, a perinatal memory-making program designed to comfort families grieving the loss of a child. We discuss the development and implementation of this project, explore the literature, and show the strategies used to address the challenges encountered.