Background:
Despite standardization in disease assessments and curative interventions for childhood cancer, palliative assessments and psychosocial interventions remain diverse and disparate.
Aim:
...Identify current approaches to palliative care in the pediatric oncology setting to inform development of comprehensive psychosocial palliative care standards for pediatric and adolescent patients with cancer and their families. Analyze barriers to implementation and enabling factors.
Design:
Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines framed the search strategy and reporting. Data analysis followed integrative review methodology.
Data sources:
Four databases were searched in May 2014 with date restrictions from 2000 to 2014: PubMed, Cochrane, PsycINFO, and Scopus. A total of 182 studies were included for synthesis. Types of studies included randomized and non-randomized trials with or without comparison groups, qualitative research, prior reviews, expert opinion, and consensus report.
Results:
Integration of patient, parent, and clinician perspectives on end-of-life needs as gathered from primary manuscripts (using NVivo coding for first-order constructs) revealed mutual themes across stakeholders: holding to hope, communicating honestly, striving for relief from symptom burden, and caring for one another. Integration of themes from primary author palliative care outcome reports (second-order constructs) revealed the following shared priorities in cancer settings: care access; cost analysis; social support to include primary caregiver support, sibling care, bereavement outreach; symptom assessment and interventions to include both physical and psychological symptoms; communication approaches to include decision-making; and overall care quality.
Conclusion:
The study team coordinated landmark psychosocial palliative care papers into an informed conceptual model (third-order construct) for approaching pediatric palliative care and psychosocial support in oncology settings.
Abstract
Aims and objectives
To examine demographic and work characteristics of interdisciplinary healthcare professionals associated with higher burnout and to examine whether the four domains of ...moral resilience contribute to burnout over and above work and demographic variables.
Background
Healthcare professionals experience complex ethical challenges on a daily basis leading to burnout and moral distress. Measurement of moral resilience is a new and vital step in creating tailored interventions that will foster moral resilience at the bedside.
Design
Cross‐sectional descriptive design.
Methods
Healthcare professionals in the eastern USA were recruited weekly via email for 3 weeks in this cross‐sectional study. Online questionnaires were used to conduct the study. The STROBE checklist was used to report the results.
Results
Work and demographic factors, such as religious preference, years worked in a healthcare profession, practice location, race, patient age, profession and education level, have unique relationships with burnout subscales and turnover intention, with the four subscales of moral resilience demonstrating a protective relationship with outcomes above and beyond the variance explained by work and demographic characteristics.
Conclusions
Higher moral resilience is related to lower burnout and turnover intentions, with multiple work demographic correlates allowing for potential areas of intervention to deal with an increase in morally distressing situations occurring at the bedside. Additionally, patterns of significant and non‐significant relationships between the moral resilience subscales and burnout subscales indicate that these subscales represent unique constructs.
Relevance to clinical practice
Understanding the everyday, pre‐pandemic correlations of moral resilience and burnout among interdisciplinary clinicians allows us to see changes that may exist. Measuring and understanding moral resilience in healthcare professionals is vital for creating ways to build healthier, more sustainable clinical work environments and enhanced patient care delivery.
The purpose of this article is to inform newly enrolled PhD students of program expectations, strategies for success, and next steps in the career of a nurse scientist.
We used empirical evidence and ...insights from the authors to describe strategies for success during a nursing PhD program and continued career development following graduation.
Measures of success included maintaining health, focus, integrity, and a supportive network, identifying mentors, pursuing new knowledge and advancing research to transform health outcomes.
Nursing PhD programs help to shape future researchers and leaders. Choosing to obtain a PhD in nursing is an investment in oneself, the discipline, and the science.
Nursing PhD programs offer opportunities to advance science, impact healthcare and health outcomes, and prepare for a variety of career opportunities. Informing newly enrolled PhD students may better prepare them for what lies ahead and facilitate student retention.
•Clear program expectations prior to enrollment prepare PhD students for success.•Networking can identify mentors and advance the development peer relationships.•Establishing career goals at the outset will guide plans for learning.
Palliative care (PC) clinicians are faced with ever-expanding pressures, which can make it difficult to fulfill their duties to self and others and lead to moral distress. Understanding the pressures ...that PC clinicians face and the resources that could be employed to ease their moral distress is crucial to maintaining a healthy PC workforce and to providing necessary PC services to patients. In this paper, we discuss recommendations related to two promising pathways for supporting PC clinicians in providing high-quality PC: (1) improving systemic PC delivery and (2) strategies to promote ethical practice environments and individual resilience. Enacting these recommendations holds promise for sustaining higher-quality and accessible PC and a more engaged PC workforce.
Parents often experience stress-related complications when their child requires blood and marrow transplant (BMT). Previous studies have described the emotional toll BMT places on parents during the ...acute phase of care and within the context of clinical complications. In this paper we introduce the Parent Impact Scale (PARimpact), designed to capture physical and emotional challenges of the child's health on the parent. The primary aim of this paper is to examine psychometric properties of PARimpact, and the secondary aim is to explore factors associated with PARimpact scores for further hypothesis generation.
This analysis used a merged dataset of two longitudinal studies. Accompanying parents (n = 363) of children undergoing BMT were surveyed up to six times from pre-BMT baseline to one year after their child's BMT. For this analysis, pre-BMT baseline responses to PARimpact were used to examine the factor structure with Principal Component Analysis (PCA) and Exploratory Factor Analysis (EFA). Construct validity was assessed, and multivariable regression was used to examine relationships between PARimpact and BMT clinical variables.
PCA and EFA revealed a one-factor solution with acceptable item loading; Cronbach's α was 0.83 at baseline. Hypothesized differences in known groups were detected for BMT complications with significantly higher PARimpact scores for those with vs. without each complication. In the adjusted multivariable regression models, acute graft versus host disease (b = 5.3; p = 0.03), end organ toxicity (b = 5.9; p < 0.01), and systemic infection (b = 9.1; p < 0.01) were associated with significantly higher mean PARimpact scores in the first 3 months following transplant. After the first 3 months to 1 year post BMT, systemic infection was associated with increased mean PARimpact scores (b = 19.2; p < 0.01).
Initial results suggest that the PARimpact is valid and reliable. Our finding that clinical complications increase the impact of BMT on the caretaking parent indicates the need for BMT healthcare professionals to identify these events and help parents navigate the BMT course. Clinical application of the PARimpact scale should be considered to identify high-risk families and provide targeted interventions to augment care.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Parents of pediatric oncology patients are faced with difficult decisions when their child reaches the end of life. For health care providers to provide optimal care, they must understand parents’ ...perspectives and preferences in end-of-life decision making. Therefore, this article provides a systematic review of the literature on the end-of-life decision making of parents of children with cancer as well as recommendations for practice and future research. Parents participated in surveys, focus groups, participant observation, and interviews to help researchers understand the expectations, hopes, fears, and values that guide their decision making. Common themes were patient–provider communication, extending time, and understanding prognosis.
Background: Pediatric blood and marrow transplantation (BMT) is an intense treatment reserved for life-threatening oncologic, hematologic, and immunologic illnesses of childhood. While BMT offers ...hope for cure, the intensity of the treatment and recovery period, and the associated burdens have been linked to sequelae such as decreased quality of life (QOL), emotional distress, and financial burdens. Even though pediatric BMT affects all family members, very little is known about the direct effects of BMT on the parents of BMT patients, and the resultant family impact. Self-management concepts have been identified by parents as important during their child’s BMT and recovery period, but parent and family self-management has not been explored in the pediatric BMT population. Purpose: The specific aims of this study are to 1) Examine the relationship of family context (complexity of condition and treatment, physical and social environment, and parent and family characteristics) to parent self-regulation, QOL, and general health at five time points during the first 12 months following BMT; 2) Examine the effect over time of complexity of condition and treatment, as measured by BMT complications, on parent impact, general heath, and QOL, and 3) Explore the family self-management experience of the transition from acute to chronic care following pediatric BMT. Method: This study used an explanatory sequential mixed methods design. The quantitative portion included a secondary analysis of an existing data set, and the qualitative portion consisted of semi-structured family as group interviews. The qualitative portion of this study was guided by the human science phenomenology approach described by Van Manen. The Individual and Family Self-Management Theory guided this study. Results: The quantitative analysis included 363 parents of pediatric BMT patients. The Parent Impact Scale of the Child Health Ratings Inventories (CHRIs) was found to have a single factor structure. In the first three months after BMT, Parent Impact was significantly worse in the presence of aGVHD ≥ grade 2, worse organ toxicity, and systemic infection. From three months to one year, Parent Impact was significantly worse with the presence of systemic infection. A year after BMT, one-third of parents reported taking at least one day off per week from work/cutting back on usual activities. Longitudinally, parent QOL was significantly better among partnered parents, Hispanic parents, parents with fewer children, parents with lower Parent Impact, and parents of children with better organ function. Parent General Health was significantly better among parents with higher educational attainment, parents with lower Parent Impact, parents of children with non-malignant diagnoses, and parents of children with worse organ toxicity. Thirteen families participated in the family as group interviews including 11 mothers, 5 fathers, 4 BMT patients, and 4 siblings. Major themes included Making a Plan, Taking Care of Basic Needs, and Managing Emotional Burdens. Even though the circumstances of BMT were similar among different families, families described using vastly different self-management strategies to survive the BMT period. Conclusions: This study provided important information about the self-management of parents and families during pediatric BMT. In the quantitative analysis parents reported taking time off work/cutting back on usual activities throughout the first year after BMT. In the qualitative interviews, parents described the stress of making work arrangements, and the resulting financial strain. The findings that family characteristics, such as the number of siblings and partner status of the parents; as well as patient characteristics, such as infection and organ toxicity are related to parent QOL and general health provide further evidence that parent and child outcomes are linked. This information is also critical for the future formation of interventions designed to support families through pediatric BMT. Furthermore, knowing these factors may help clinicians to identify families most as risk for negative sequelae. Future research is needed to study the stability of qualitative concepts over time, and develop family-centered interventions designed to help families achieve their self-management goals during pediatric BMT.
Uterine papillary serous carcinoma (UPSC) is an uncommon but aggressive type of endometrial cancer associated with rapid progression of disease and poor prognosis. We investigated 23 cases of UPSC. ...p53 expression was studied in archival paraffin-embedded tissue by immunohistochemistry. Eleven tumors (47.8%) showed p53 overexpression whereas 12 tumors (52.2%) were p53 negative. One of 8 stage I/II (12.5%) and 10/15 stage III/IV (66.6%) tumors revealed p53 staining (P= 0.027). The median overall survival was 43.3 months. Patients with advanced-stage (III, IV) disease had a 5-year overall survival probability (5-year OS%) of 24% compared to 100% in those in stages I and II (log-rank,P= 0.018). Myometrial invasion, lymphatic space invasion, or lymph node involvement did not correlate with the 5-year OS of these patients. Patients whose tumors overexpressed p53 had a significantly shorter survival than those whose tumors did not (P= 0.033). This study confirms the influence of p53 overexpression on survival in UPSC patients.
We assembled genome-wide data from 16 prehistoric Africans. We show that the anciently divergent lineage that comprises the primary ancestry of the southern African San had a wider distribution in ...the past, contributing approximately two-thirds of the ancestry of Malawi hunter-gatherers ∼8,100–2,500 years ago and approximately one-third of the ancestry of Tanzanian hunter-gatherers ∼1,400 years ago. We document how the spread of farmers from western Africa involved complete replacement of local hunter-gatherers in some regions, and we track the spread of herders by showing that the population of a ∼3,100-year-old pastoralist from Tanzania contributed ancestry to people from northeastern to southern Africa, including a ∼1,200-year-old southern African pastoralist. The deepest diversifications of African lineages were complex, involving either repeated gene flow among geographically disparate groups or a lineage more deeply diverging than that of the San contributing more to some western African populations than to others. We finally leverage ancient genomes to document episodes of natural selection in southern African populations.
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•Genome-wide analysis of 16 African individuals who lived up to 8,100 years ago•Forager populations related to southern African San were once widespread in eastern Africa•Comparison of ancient and modern Africans reveal recent genomic adaptations•Evidence for a divergent human lineage contributing to western Africans
The prehistory of African populations is explored by genome-wide analysis of 16 human remains providing insight into ancestral lineages, admixture, and genomic adaptations.
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