Who, What, Where, and How? The State of Family Science in Pediatric Palliative Care.

CONTEXT: Families are vital providers and recipients of pediatric palliative care (PPC) services. Understanding the scope and nature of evidence at the intersection of family science and PPC research is necessary to develop family-focused interventions that enhance child and family health. OBJECTIVES: Explore and describe the family-level impact of pediatric serious illness. METHODS: We conducted a librarian-assisted scoping review using Arskey and O'Malley's approach. We searched PubMed, Scopus, CINAHL, and EMBASE databases for empirical publications from 2016-2021 that focused on families navigating serious pediatric illness published in English. Two reviewers assessed eligibility, with discrepancies resolved by a third. We used Covidence and REDCap for data management and extraction. RESULTS: We screened 10,983 abstracts; 309 abstracts were included in full text screening. The final group of 52 citations was analyzed by the entire team. Most research was conducted in Western Europe and North America. The perspectives of parents of children with cancer were most frequently described; voices of seriously ill youth and their siblings were less often presented. Most of the research was descriptive qualitative, followed by descriptive quantitative. Few studies were mixed methods, inferential, or interpretive. Studies most often described parent, youth, and family experience with illness and less often explored family processes and relationships. Irrespective of the approach (i.e., qualitative, quantitative), few studies focused on families as the analytic unit or used family-level analysis techniques. Study participants were usually from local dominant populations and less often from historically marginalized communities. CONCLUSION: The robust, descriptive, and individual-level evidence describing family impact of serious pediatric illness provides a solid foundation for future research priorities. Stronger integration of family techniques and diverse family voices in pediatric palliative care research can clarify family processes, illuminate structural barriers, and inform interventions that are responsive to family needs. These steps will enhance the education, policy, and clinical provision of PPC to all who would benefit, thereby advancing health equity for children living with serious illness and their families.

Population-level SDOH and Pediatric Asthma Health Care Utilization: A Systematic Review.

CONTEXT: Spatial analysis is a population health methodology that can determine geographic distributions of asthma outcomes and examine their relationship to place-based social determinants of health (SDOH). OBJECTIVES: To systematically review US-based studies analyzing associations between SDOH and asthma health care utilization by geographic entities. DATA SOURCES: Pubmed, Medline, Web of Science, Scopus, and Cumulative Index to Nursing and Allied Health Literature. STUDY SELECTION: Empirical, observational US-based studies were included if (1) outcomes included asthma-related emergency department visits or revisits, and hospitalizations or rehospitalizations; (2) exposures were ≥1 SDOH described by the Healthy People (HP) SDOH framework; (3) analysis occurred at the population-level using a geographic entity (eg, census-tract); (4) results were reported separately for children ≤18 years. DATA EXTRACTION: Two reviewers collected data on study information, demographics, geographic entities, SDOH exposures, and asthma outcomes. We used the HP SDOH framework's 5 domains to organize and synthesize study findings. RESULTS: The initial search identified 815 studies; 40 met inclusion criteria. Zip-code tabulation areas (n = 16) and census-tracts (n = 9) were frequently used geographic entities. Ten SDOH were evaluated across all HP domains. Most studies (n = 37) found significant associations between ≥1 SDOH and asthma health care utilization. Poverty and environmental conditions were the most often studied SDOH. Eight SDOH-poverty, higher education enrollment, health care access, primary care access, discrimination, environmental conditions, housing quality, and crime - had consistent significant associations with asthma health care utilization. CONCLUSIONS: Population-level SDOH are associated with asthma health care utilization when evaluated by geographic entities. Future work using similar methodology may improve this research's quality and utility.

The 2023-2026 Hospice and Palliative Nurses Association Research Agenda.

The Hospice and Palliative Nursing Association established the triannual research agenda to ( a ) provide focus for researchers to conduct meaningful scientific and quality improvement initiatives and inform evidence-based practice, ( b ) guide organizational funding, and ( c ) illustrate to other stakeholders the importance of nursing research foci. HPNA Research Agendas are developed to give direction for future research to continue advancing expert care in serious illness and ensure equitable delivery of hospice and palliative care.

Social Risk Interventions and Health Care Utilization for Pediatric Asthma: A Systematic Review and Meta-analysis.

Importance: Social determinants of health (SDOH) correlate with pediatric asthma morbidity, yet whether interventions addressing social risks are associated with asthma outcomes among children is unclear. Objective: To catalog asthma interventions by the social risks they address and synthesize their associations with asthma-related emergency department (ED) visits and hospitalizations among children. Data Sources: PubMed, Scopus, PsycINFO, SocINDEX, CINAHL, and references of included full-text articles were searched from January 1, 2008, to June 16, 2021. Study Selection: Included articles were US-based studies evaluating the associations of interventions addressing 1 or more social risks with asthma-related ED visits and hospitalizations among children. The systematic review included 38 of the original 641 identified articles (6%), and the meta-analysis included 19 articles (3%). Data Extraction and Synthesis: Data extraction followed the Preferred Reporting Items for Systematic Reviews and Meta-analyses reporting guideline. The SDOH intervention clusters were identified by grouping studies according to the social risks they addressed, using the Healthy People 2020 SDOH framework. Random-effects models created pooled risk ratios (RRs) as the effect estimates. Main Outcomes and Measures: Patients with ED visits or hospitalizations were the primary outcomes. Subgroup analyses were conducted by an SDOH intervention cluster. Sensitivity analyses were conducted for each, removing outlier studies and studies failing to meet the minimum quality threshold. Results: In total, 38 studies were included in the systematic review, with 19 of these studies providing data for the meta-analysis (5441 participants). All interventions addressed 1 or more of the health, environment, and community domains; no interventions focused on the economy or education domains. In the primary analysis, social risk interventions were associated with decreased ED visits (RR, 0.68; 95% CI, 0.57-0.81; I2 = 70%) and hospitalizations (RR, 0.50; 95% CI, 0.37-0.68; I2 = 69%). In subgroup analyses, the health, environment, and community intervention cluster produced the lowest RR for ED visits (RR, 0.53; 95% CI, 0.44-0.64; I2 = 50%) and for hospitalizations (RR, 0.33; 95% CI, 0.20-0.55; I2 = 71%) compared with other intervention clusters. Sensitivity analyses did not alter primary or subgroup effect estimates. Conclusions and Relevance: The results of this systematic review and meta-analysis indicate that social risk interventions are associated with decreased asthma-related ED visits and hospitalizations among children. These findings suggest that addressing social risks may be a crucial component of pediatric asthma care to improve health outcomes.

Human-to-Cattle Mycobacterium tuberculosis Complex Transmission in the United States.

The Mycobacterium tuberculosis complex (MTBC) species includes both M. tuberculosis, the primary cause of human tuberculosis (TB), and M. bovis, the primary cause of bovine tuberculosis (bTB), as well as other closely related Mycobacterium species. Zoonotic transmission of M. bovis from cattle to humans was recognized more than a century ago, but transmission of MTBC species from humans to cattle is less often recognized. Within the last decade, multiple published reports from around the world describe human-to-cattle transmission of MTBC. Three probable cases of human-to-cattle MTBC transmission have occurred in the United States since 2013. In the first case, detection of active TB disease (M. bovis) in a dairy employee in North Dakota prompted testing and ultimate detection of bTB infection in the dairy herd. Whole genome sequencing (WGS) demonstrated a match between the bTB strain in the employee and an infected cow. North Dakota animal and public health officials concluded that the employee's infection was the most likely source of disease introduction in the dairy. The second case involved a Wisconsin dairy herd with an employee diagnosed with TB disease in 2015. Subsequently, the herd was tested twice with no disease detected. Three years later, a cow originating from this herd was detected with bTB at slaughter. The strain in the slaughter case matched that of the past employee based on WGS. The third case was a 4-month-old heifer calf born in New Mexico and transported to Texas. The calf was TB tested per Texas entry requirements and found to have M. tuberculosis. Humans are the suspected source of M. tuberculosis in cattle; however, public health authorities were not able to identify an infected human associated with the cattle operation. These three cases provide strong evidence of human-to-cattle transmission of MTBC organisms and highlight human infection as a potential source of introduction of MTBC into dairy herds in the United States. To better understand and address the issue, a multisectoral One Health approach is needed, where industry, public health, and animal health work together to better understand the epidemiology and identify preventive measures to protect human and animal health.

Metrics of shock in pediatric trauma patients: A systematic search and review.

INTRODUCTION: Shock-index (SI) and systolic blood pressure (SBP) are metrics for identifying children and adults with hemodynamic instability following injury. The purpose of this systematic review was to assess the quality of these metrics as predictors of outcomes following pediatric injury. MATERIALS AND METHODS: We conducted a literature search in Pubmed, SCOPUS, and CINAHL to identify studies describing the association between shock metrics on the morbidity and mortality of injured children and adolescents. We used the data presented in the studies to calculate the sensitivity and specificity for each metric. This study was registered with Prospero, protocol CRD42020162971. RESULTS: Fifteen articles met the inclusion criteria. seven studies evaluated SI or SIPA score, an age-corrected version of SI, as predictors of outcomes following pediatric trauma, with one study comparing SIPA score and SBP and one study comparing SI and SBP. The remaining eight studies evaluated SBP as the primary indicator of shock. The median sensitivity for predicting mortality and need for blood transfusion was highest for SI, followed by SIPA, and then SBP. The median specificity for predicting these outcomes was highest for SBP, followed by SIPA, and then SI. CONCLUSIONS: Common conclusions were that high SIPA scores were more specific than SI and more sensitive than SBP. SIPA score had better discrimination for severely injured children compared to SI and SBP. An elevated SIPA was associated with a greater need for blood transfusion and higher in-hospital mortality. SIPA is specific enough to exclude most patients who do not require a blood transfusion.

Association of Ventilation during Initial Trauma Resuscitation for Traumatic Brain Injury and Post-Traumatic Outcomes: A Systematic Review.

OBJECTIVES: In the absence of evidence of acute cerebral herniation, normal ventilation is recommended for patients with traumatic brain injury (TBI). Despite this recommendation, ventilation strategies vary during the initial management of patients with TBI and may impact outcome. The goal of this systematic review was to define the best evidence-based practice of ventilation management during the initial resuscitation period. METHODS: A literature search of PubMed, CINAHL, and SCOPUS identified studies from 2009 through 2019 addressing the effects of ventilation during the initial post-trauma resuscitation on patient outcomes. RESULTS: The initial search yielded 899 articles, from which 13 were relevant and selected for full-text review. Six of the 13 articles met the inclusion criteria, all of which reported on patients with TBI. Either end-tidal carbon dioxide (ETCO2) or partial pressure carbon dioxide (PCO2) were the independent variables associated with mortality. Decreased rates of mortality were reported in patients with normal PCO2 or ETCO2. CONCLUSIONS: Normoventilation, as measured by ETCO2 or PCO2, is associated with decreased mortality in patients with TBI. Preventing hyperventilation or hypoventilation in patients with TBI during the early resuscitation phase could improve outcome after TBI.

Thematic expansion: A new strategy for theory development.

We developed and applied metasynthesis methods to expand previously reported thematic descriptions of parents' internal definition of "being a good parent to my seriously ill child" as part of a larger study to examine parenting of children with serious illness. Our systematic approach included: literature search, purposeful selection of grounded theories regarding parenting a seriously ill child, study summaries, mapping evidence of good parent themes onto structural elements of grounded theory, cross-study comparisons, and theoretical memoing to summarize analytic insights. Twenty-five grounded theory studies from 32 reviewed reports reflected multiple conditions (n=5), countries (n=10) and family members (n=386 families). We report a worked example of the processes used to extend the original good parent themes and detail our processes through one good parent theme. The methods we describe are a promising approach to extend thematic analysis findings and advance thematic expansions toward development of more formal theoretical syntheses.

Classification strategies for non-routine events occurring in high-risk patient care settings: A scoping review.

INTRODUCTION: Non-routine events (NREs) are atypical or unusual occurrences in a pre-defined process. Although some NREs in high-risk clinical settings have no adverse effects on patient care, others can potentially cause serious patient harm. A unified strategy for identifying and describing NREs in these domains will facilitate the comparison of results between studies. METHODS: We conducted a literature search in PubMed, CINAHL, and EMBASE to identify studies related to NREs in high-risk domains and evaluated the methods used for event observation and description. We applied The Joint Commission on Accreditation of Healthcare Organization (JCAHO) taxonomy (cause, impact, domain, type, prevention, and mitigation) to the descriptions of NREs from the literature. RESULTS: We selected 25 articles that met inclusion criteria for review. Real-time documentation of NREs was more common than a retrospective video review. Thirteen studies used domain experts as observers and seven studies validated observations with interrater reliability. Using the JCAHO taxonomy, "cause" was the most frequently applied classification method, followed by "impact," "type," "domain," and "prevention and mitigation." CONCLUSIONS: NREs are frequent in high-risk medical settings. Strengths identified in several studies included the use of multiple observers with domain expertise and validation of the event ascertainment approach using interrater reliability. By applying the JCAHO taxonomy to the current literature, we provide an example of a structured approach that can be used for future analyses of NREs.

Nutrition and the developing brain: the road to optimizing early neurodevelopment: a systematic review.

BACKGROUND: Neonatal intensive care practices have resulted in marked improvements in the survival of premature infants; however, they remain at significant risk for adverse neurodevelopmental outcomes. The impact of current nutritional practices on brain development following early extra-uterine exposure in premature infants is not well known. METHODS: We performed a systematic review to investigate nutritional effects on postnatal brain development in healthy term and prematurely born infants utilizing advanced magnetic resonance imaging tools. RESULTS: Systematic screen yielded 595 studies for appraisal. Of these, 22 total studies were selected for inclusion in the review, with findings summarized in a qualitative, descriptive fashion. CONCLUSION: Fat and energy intake are associated with improved brain volume and development in premature infants. While breast milk intake and long-chain polyunsaturated fatty acid supplementation has been proven beneficial in term infants, the impact in preterm infants is less well understood.

Inpatient Quality Improvement Interventions for Asthma: A Meta-analysis.

CONTEXT: Despite the availability of evidence-based guidelines for the management of pediatric asthma, health care utilization remains high. OBJECTIVE: Systematically review the inpatient literature on asthma quality improvement (QI) and synthesize impact on subsequent health care utilization. DATA SOURCES: Medline and Cumulative Index to Nursing and Allied Health Literature (January 1, 1991-November 16, 2016) and bibliographies of retrieved articles. STUDY SELECTION: Interventional studies in English of inpatient-initiated asthma QI work. DATA EXTRACTION: Studies were categorized by intervention type and outcome. Random-effects models were used to generate pooled risk ratios for health care utilization outcomes after inpatient QI interventions. RESULTS: Thirty articles met inclusion criteria and 12 provided data on health care reutilization outcomes. Risk ratios for emergency department revisits were: 0.97 (95% confidence interval [CI]: 0.06-14.47) <30 days, 1.70 (95% CI: 0.67-4.29) for 30 days to 6 months, and 1.22 (95% CI: 0.52-2.85) for 6 months to 1 year. Risk ratios for readmissions were: 2.02 (95% CI: 0.73-5.61) for <30 days, 1.68 (95% CI: 0.88-3.19) for 30 days to 6 months, and 1.27 (95% CI 0.85-1.90) for 6 months to 1 year. Subanalysis of multimodal interventions suggested lower readmission rates (risk ratio: 1.49 [95% CI: 1.17-1.89] over a period of 30 days to 1 year after the index admission). Subanalysis of education and discharge planning interventions did not show effect. LIMITATIONS: Linkages between intervention and outcome are complicated by the multimodal approach to QI in most studies. CONCLUSIONS: We did not identify any inpatient strategies impacting health care reutilization within 30 days of index hospitalization. Multimodal interventions demonstrated impact over the longer interval.

Creating a career legacy map to help assure meaningful work in nursing.

When nurses declare a professional legacy (or what they intend to be better in health care because of their efforts), they are likely to maintain a focus on achieving their legacy and to experience meaning in the process. We depict the legacy and involved steps in creating a legacy map, which is a concrete guide forward to intended career outcomes. Informed by the "meaningful work" literature, we describe a legacy map, its function, the process to create one, and the application of a legacy map to guide careers. We also describe an administrative benefit of the legacy map-the map can be used by team leaders and members to secure needed resources and opportunities to support the desired legacy of team members. Legacy mapping can be a self-use career guidance tool for nurses and other health care professionals or a tool that links the career efforts of a team member with the career support efforts of a team leader.

The development of a CAHPS instrument for Nursing Home Residents (NHCAHPS).

We report on a federal initiative to develop a CAHPS (The Consumer Assessment of Healthcare Providers and Systems) survey to measure residents' experiences with quality-of-care and quality-of-life in nursing homes (known as NHCAHPS). We focus on how we created and tested questions for inclusion in the instrument and tested a possible cognitive screener to determine which residents could participate in a NHCAHPS interview. The major lessons learned were: (1) In contrast to other CAHPS surveys, ratings were more useful than reports because of the difficulty that residents had with summarizing over time and people; (2) consistent with other CAHPS surveys, the 0 to 10 response scale appeared to work well with nursing home residents for many of the quality-of-care questions; however, a different response scale was needed for many of the quality-of-life items; and (3) in contrast with typical survey methodology and other CAHPS surveys where explicit time reference periods are used, a non-specific present reference period in questions seemed to work best.

Health insurance knowledge among Medicare beneficiaries.

OBJECTIVE: To assess the effect of new consumer information materials about the Medicare program on beneficiary knowledge of their health care coverage under the Medicare system. DATA SOURCE: A telephone survey of 2,107 Medicare beneficiaries in the 10-county Kansas City metropolitan statistical area. STUDY DESIGN: Beneficiaries were randomly assigned to a control group and three treatment groups each receiving a different set of Medicare informational materials. The "handbook-only" group received the Health Care Financing Administration's new Medicare & You 1999 handbook. The "bulletin" group received an abbreviated version of the handbook, and the "handbook + CAHPS" group received the Medicare & You handbook plus the Consumer Assessment of Health Plans (CAHPS) survey report comparing the quality of health care provided by Medicare HMOs. Beneficiaries interested in receiving information were oversampled. DATA COLLECTION METHODS: Data were collected during two separate telephone surveys of Medicare beneficiaries: one survey of new beneficiaries and another survey of experienced beneficiaries. The intervention materials were mailed to sample members in advance of the interviews. Knowledge for the treatment groups was measured shortly after beneficiaries received the intervention materials. PRINCIPAL FINDINGS: Respondents' knowledge was measured using a psychometrically valid and reliable 15-item measure. Beneficiaries who received the intervention materials answered significantly more questions correctly than control group members. The effect on beneficiary knowledge of providing the information was modest for all intervention groups but varied for experienced beneficiaries only, depending on the intervention they received. CONCLUSIONS: The findings suggest that all of the new materials had a positive effect on beneficiary knowledge about Medicare and the Medicare + Choice program. While the absolute gain in knowledge was modest, it was greater than increases in knowledge associated with traditional Medicare information sources.

Effects of enhanced external counterpulsation on Health-Related Quality of Life continue 12 months after treatment: a substudy of the Multicenter Study of Enhanced External Counterpulsation.

BACKGROUND: The Multicenter Study of Enhanced External Counterpulsation (MUST-EECP) was the first prospective, randomized, blinded, sham-controlled study of enhanced external counterpulsation (EECP) in the treatment of chronic stable angina. We previously reported that EECP therapy lengthens the time to exercise-induced myocardial ischemia and reduces angina. We now describe the effects of EECP therapy versus a sham-treated control group in terms of patients' functioning, their senses of well-being and other Health-Related Quality Of Life (HQOL) parameters from baseline to end of treatment and from baseline to 12 months after treatment. OBJECTIVE: To determine whether a 35-hour course of EECP affects the HQOL of patients with symptomatic coronary artery disease, 12 months following treatment. METHODS: Seventy-one of the 139 patients enrolled in MUST-EECP provided evaluable patient-completed questionnaires at baseline, at the end of treatment, and 12 months post-treatment. The Medical Outcomes Study 36-Item Short-Form Health Survey and the Quality of Life Index-Cardiac Version III were used to assess effects on HQOL. RESULTS: Both groups had similar HQOL scores at baseline. At end of treatment and at 12-month follow up, patients who had active-CP reported greater improvement than those who had inactive-CP in all nine quality of life scales, including ability to perform activities of daily living, ability to work, bodily pain, confidence in health, energy, ability to engage in social activities with family and friends, anxiety and depression, and quality of life issues from the effects of angina on health and functioning. Despite small sample sizes, active-CP patients demonstrated significantly greater improvement at 12 months following treatment in bodily pain, social functioning, and quality of life specific to cardiac patients compared with inactive-CP patients. CONCLUSION: Significant health-related quality of life improvements were measurable up to 12 months after the completion of treatment with EECP. Improvements in this controlled study are consistent with HQOL changes reported in case series and patient registries. Larger studies are warranted.