Health care providers' perspectives on the need for palliative care in Upper Egypt: a descriptive exploratory study including children and adult patients.

BACKGROUND: Only four centers in Egypt provide Palliative Care (PC) for adult cancer patients and one provides care for pediatric cancer patients. While PC is not widely utilized in Egypt, this study aims to assess patients' need for PC from the providers' perspective. The primary objectives were to assess providers' knowledge about PC, understand patients' needs, and compare children's and adults' needs for PC. METHODS: A descriptive exploratory design was utilized. Patients were recruited from a cancer center in Qena Governorate, Egypt. All 108 nurses and physicians in the cancer center were interviewed to assess their perspectives about PC and patients' need for it. RESULTS: Of the 108 care providers, more than 60% of the providers were not familiar with the concept of PC and did not participate in related activities, and more than 77% did not receive any training on the topic. All the providers reported there is no specific policy for end-of-life care. More than 60% of the providers responded that their patients do not need PC as the providers believe that PC provided only for end-stage patients. 50% of the providers see that PC has benefits such as pain relief and symptom management. No major differences were noted between pediatric and adult PC needs. CONCLUSION: The results of this study provide foundational evidence of providers' lack of experience with and understanding of palliative care. This deficit is creating a barrier to providing palliative care in Egypt.

Developing a theoretically grounded, digital, ecological momentary intervention for parental bereavement care using the ORBIT model-Phase 1.

Current models of bereavement care do not address all of bereaved parents' unique needs. Diverse challenges limit parents' ability to access certain bereavement services. A web-based intervention prototype for bereaved parents was developed. Using convenience and snowball techniques, 14 participants (pediatric providers, software developers, and bereaved parents) were enrolled in a descriptive, cross-sectional feasibility and usability study. While the intervention was generally considered acceptable, three themes were identified to enhance its usability and acceptability: timing; delivery; and revisions. Further intervention development is needed to improve both short- and long-term physical and psychological outcomes for bereaved parents.

Social media as a recruitment method to reach a diverse sample of bereaved parents.

BACKGROUND: Recruiting a diverse group of parents who are grieving the loss of a child into research is challenging. Social media users represent all demographic groups in the United States. Online platforms, such as Facebook and Twitter, may be one potential method to reach and recruit a diverse group of bereaved parents. To our knowledge, this is the first known article to describe social media as a recruitment mechanism for bereaved parents. PURPOSE: The purpose of this paper is to describe 1) how the social media platforms of Facebook and Twitter were used to recruit bereaved parents into a cross-sectional, online survey, and 2) the effectiveness of social media as a recruitment tool for this population. CONCLUSIONS: Social media has the potential to be an effective recruitment tool to reach a diverse group of users. More research is needed, however, to determine the best methods to reach fathers as well as racial and ethnic minorities.

Parental bereavement: Looking beyond grief.

Bereaved parents have higher morbidity and mortality rates when compared to nonbereaved parents. Although parental grief is well studied, the complexities of challenges bereaved parents face are not understood. This study describes parental bereavement challenges during the first 6 months following the death of their child. The complex parental bereavement challenges are characterized by the absence of the child, their emotional response, and the changed relationships with family and friends. The adaptive leadership framework is a useful framework to identify and classify challenges. Future research can use this framework to provide a structure that test interventions to address the challenges.

Palliative Care Providers' and Administrators' Perspectives on Integrating Community-Based Palliative Care Using the Social Determinants of Health Framework.

The purpose of the study is to examine the perspectives of palliative care (PC) providers about the needs, barriers, and disparities to integrate PC into the community setting. This study used a descriptive qualitative design to complete a phone interview that incorporated the United States Department of Health and Human Services' (USDHHS) social determinants of health (SDOH) framework domains, as well as a demographic survey. Thirteen PC providers and administrators were interviewed to ascertained their perceptions about community-based palliative care (CBPC) related to the SDOH. Subthemes were ascertained using the USDHHs' SDOH as themes: lack of patient access to resources, challenges of institutional philosophic buy-in, gaps in medical education, lack of health care literacy among patients, distrust in health care, differing perspectives on quality of life, social and community support, environmental injustice, lack of interdisciplinary collaboration, multidisciplinary continuing education, and CBPC program evaluation. The results from this study provide evidence to help identify potential barriers to planning necessary CBPC interventions based on potential SDOH disparities.

A Structured Home Health and Hospice Clinical Rotation and Onboarding Model to Address the Nursing Shortage.

North Carolina home health and hospice agencies are experiencing serious shortages of registered nurses (RNs), particularly in rural areas. These shortages can negatively impact patients and families by delaying access to care and possibly resulting in avoidable hospitalizations/rehospitalizations. Many home health and hospice agencies do not hire newly graduated RNs due to limited patient care experience, limited or no opportunity for home health/hospice clinical rotations, and the autonomous nature of providing care in the home. The Hospice and Home Health Foundation of North Carolina was awarded a $468,196 3-year grant, and, in collaboration with key stakeholders, developed a model for clinical rotation experiences in home health and hospice settings for RN students as well as an onboarding model for newly graduated RNs. Seven home health and hospice project partner agencies were selected to pilot the models. This article describes program implementation and evaluation. We used a survey method and site visit interviews to assess program effectiveness. Students provided positive feedback about the clinical rotation and more than 80% indicated their clinical rotation met "most" or "almost all" of their learning needs. The focus group interviews provided substantive anecdotal examples to validate the survey results.

A Review of Parental Bereavement Interventions: Implications for Clinical Practice, Research, and Policy.

The untimely death of a child is an incredibly traumatic experience for parents and their loved ones. It uproots every aspect of their life, leading the bereaved parents to be far more likely to have poorer physical and mental health outcomes. This traumatic form of bereavement should have comprehensive grief-focused, high-quality interventions available for parents and extended family members. The purpose of this rapid review was to explore and describe the bereavement interventions available for parents and family that have been published within the past 5 years. Records identified 123 full-text articles that were reviewed, and 14 of those were included for data extraction and synthesis, using Cochrane Rapid Reviews Methods Group with the addition of keyword searches. The 14 articles were analyzed by evaluating description of bereaved parents, accessibility of interventions, who delivered interventions, and the type and delivery time of interventions. Four types of interventions were identified, including Web-based, community-based, hospital-based, and psychotherapy interventions. This rapid review has implications for clinical practice, research, and health care policy that can increase the availability of support and quality of interventions for bereaved parents and family members.

Perspectives on Cancer Pain Assessment and Management in Children.

OBJECTIVE: To report evidence regarding pain assessment and management for children and adolescents receiving treatment for cancer. DATA SOURCES: Published research and clinical guidelines. CONCLUSION: Children and adolescents experience multiple sources of pain across the cancer continuum. They require developmentally relevant approaches when assessing and managing pain. This review suggests that consideration of the developmental stage and age of the child are essential in both pain assessment and pain management. IMPLICATIONS FOR NURSING PRACTICE: Pediatric oncology nurses play a key role in developmentally appropriate pain assessment, identification of potential strategies to manage pain, and delivery of pharmacologic and nonpharmacologic therapies.

A Systematic Literature Review of the Current State of Knowledge Related to Interventions for Bereaved Parents.

AIMS: The purpose of this systematic literature review is to describe the interventions for bereaved parents, evaluate intervention effectiveness through study methodology rigor, replicability, and theoretical foundations. METHODS: We searched MEDLINE via PubMed (1966-2018), CINAHL (1937-present), PsycINFO (1887-present), and Embase (1947-present) using various search words and MeSH terms related to the study purpose. A blinded screening of title/abstract was performed, with conflicting inclusion decisions resolved through group discussions. Matrices for remaining articles were created and discussed among the team. The levels of evidence of the 9 records were rated from very low to high based on the Grading of Recommendations Assessment, Development, and Evaluation guidelines. RESULTS: Our initial pool included 1025 articles. After the screening of titles/abstracts, 63 articles were retained for full-text reviews. Evaluated based on the inclusion/exclusion criteria, 9 records met the review criteria. Of the 9 records, 1 was graded as very low, 3 low, and 5 low to moderate. The interventions for bereaved parents varied from using single-model interventions such as expressive arts therapy and telephone support to multimodal interventions that combined resources (ie, peer support, resource packets, and health-care support). Only 1 study explicitly illustrated how its bereavement intervention was designed based on the proposed theoretical model. CONCLUSIONS: This review highlights the need for individualized, well-tested, and effective bereavement care interventions to support bereaved parents. In summary, the state of the science on interventions for bereaved parents is poor and much work needs to be done to effectively address the needs of bereaved parents, including both their physical and emotional health needs.

Bereaved Parents' Health Status During the First 6 Months After Their Child's Death.

PURPOSE: To examine bereaved parents' physical, mental, and social health during the first 6 months after their child's (<12 years) death from a life-threatening illness. BACKGROUND AND SIGNIFICANCE: Bereaved parents have higher mortality and morbidity rates when compared to nonbereaved parents. Acute illnesses, hospitalizations, and medication changes are highest in the first 6 months. An understanding of bereaved parents' health risk indicators can help inform development of health promotion and disease prevention measures. Methods and Analysis: A prospective descriptive study examined 8 parent dyads. Parents completed health surveys (Patient-Reported Outcomes Measurement Information System-global, social, and sleep; Brief Symptom Inventory [BSI] 18), which are used to assess parents' health at 3 and 6 months after their child's death. Demographic data included a medical history, hospital or emergency department visits, and smoking and alcohol intake. Descriptive statistics were used to compare parents' scores to US general population scores. FINDINGS: Mothers' and fathers' physical, mental, and sleep health scores were typically within 1 to 2 standard deviations of the population norms. However, their social health scores were as low as 3 standard deviations and all parents' scores were below population norms. Four (25%) of the 16 parents had new diagnosis during the first 6 months. Based on the BSI-18, 3 parents had their scores above population cutoffs, which warranted a need for further clinical evaluation. CONCLUSIONS: Health data highlight the "at-risk" health status of bereaved parents. Further validation of these data is required to support the development of health promotion and disease prevention programs.

Care of children with sickle cell disease in the emergency department: parent and provider perspectives inform quality improvement efforts.

Children with sickle cell disease (SCD) present to the emergency department (ED) with complex medical and behavioral health needs. Little research has been conducted to understand elements necessary to provide a comprehensive approach. We conducted 9 focus groups and 2 individual interviews with ED nurses, ED physicians, parents, 1 SCD nurse practitioner, and 1 SCD hematologist in 6 states. The primary aim of the study was to assess the appropriateness of the Emergency Department Sickle Cell Assessment of Needs and Strengths for pediatric patients. Participants were asked to discuss important aspects of ED management. Transcripts were analyzed according to 5 key decision points, and common themes were identified for each decision. Decisions included triage, analgesic management, diagnostic evaluation, disposition, and high risk evaluation and referrals needed at discharge. Participants identified critical areas that can be used to organize and improve the assessment, management, and disposition/referral decisions in order to provide better care to children with SCD in the ED. Parent input was critical for each decision.

Impact of peginterferon alpha-2b and ribavirin treatment on liver tissue in patients with HCV or HCV-HIV co-infection.

OBJECTIVE: To evaluate the effect of treatment with peginterferon alpha-2b and ribavirin on liver histology in patients with chronic hepatitis C (CHC) with or without HIV infection. METHODS: Patients received peginterferon alpha-2b (1.5 micro/kg/week during the first 4 weeks; 1.0 micro/kg/week thereafter) plus ribavirin (800-1200 mg/day, adjusted for weight) for 24 (genotypes 2/3) or 48 weeks (genotypes 1/4). Paired liver biopsy specimens were obtained at baseline and at the end of follow-up. RESULTS: 108 paired biopsy specimens were available: 67 from HCV-monoinfected and 41 from co-infected patients. At the end of follow-up, necroinflammatory activity (NIA) was significantly reduced (P<0.001), and fibrosis scores improved by > or = 1 point (Ishak et al criteria) in 65.7% of HCV-monoinfected patients. In co-infected patients, NIA was significantly reduced (P<0.001), and fibrosis scores improved by > or = 1 point in 42.5% of cases. In both groups, results were better for patients who attained sustained virological response (SVR). HCV RNA was undetectable in the second biopsy specimens of all patients who attained SVR. CONCLUSION: Liver fibrosis is reduced significantly after a course of therapy in patients with chronic hepatitis C. Reduction of fibrosis is more significant in patients who are monoinfected with HCV and in those who attained SVR.