This systematic review will examine the social support needs of bereaved parents in the specific context of pediatric cancer by synthesizing the qualitative evidence. Social support encompasses ...emotional, practical, informational, and meaning-making support needs.
The Joanna Briggs Institute procedures for conducting qualitative systematic reviews guided every stage of this review. Four databases (PsychInfo, CINAHL, Pubmed, and ASSIA) were systematically searched, in addition to the gray literature and scoping review. Through a five-step critical appraisal process 11 out of 668 potential articles were identified as meeting the inclusion criteria.
Relevant findings were synthesized with a thematic-synthesis approach. Findings, which follow the journey of bereaved parents integrated under the core-category "Needs." This encompasses of four higher-level categories:
Last days: Parent needs when caring for their dying child
Rest in peace: Parent needs during the child's death
Feeling abandoned: Parent needs for contact after the child's death
Searching for Meaning: Parents needs when making sense of loss
Informational support needs is largely unexplored in academic literature. Staff in the treating-hospital are central in offering bereavement-support to parents, who may otherwise feel that they have lost their second home (hospital) and second family (staff).
ObjectiveTo explore dialysis decision-making for adults who lack capacity due to cognitive impairment, a common and under-recognised condition in those with advanced chronic kidney disease ...(CKD).DesignSecondary analysis of qualitative data collected during the Conservative Kidney Management Assessment of Practice Patterns Study programme of research was performed. Sixty semistructured interviews were conducted with multiprofessional team members from UK renal centres. Staff were asked about local facilities, the value of conservative kidney management (CKM), when and with whom CKM was discussed and how CKM could be improved. Thematic analysis was employed to identify, characterise and report on themes that emerged from the data, focused on the specific issues experienced by people with dementia.SettingA purposive sample of nine UK renal centres differing in the scale of their CKM programmes.ParticipantsClinical directors of renal centres identified staff involved in CKM. Staff were asked to participate if they had experience of low clearance clinics or of caring for patients with advanced CKD (estimated glomerular filtration rate <20mL/min/1.732 or >65 years with end-stage kidney disease).ResultsTwo overarching themes were identified: factors taken into consideration during decision-making, and the process of decision-making itself. Comorbidity, social support, quality of life and the feasibility of dialysis were reported as factors pertinent to clinicians’ decisions regarding suitability. The majority of renal centres practised multidisciplinary ‘best interests’ decision-making for those without capacity. Attitudes to advance care planning were divided.ConclusionsIn view of the prevalence of cognitive impairment among those with advanced CKD, we suggest consideration of routine assessment of cognition and capacity. In the UK, dialysis is initiated and continued for individuals with dementia and services should be adapted to meet the needs of this population.
This essay examines issues that typify Fluxus work and thinking through reflections on historiography, hermeneutics and historicism. Because Fluxus actively engenders possibilities and futures, it ...activates the question of legacy. Generating futures entails a dialog with the past. This dialog with history requires historiography, articulate reflection on how we make and write history-and articulate reflection on how we understand it. While such an understanding is necessary for historians who seek to understand the past of a phenomenon such as Fluxus, if was of central import to the artists, architects, composers and designers who created Fluxus and to those who desire to actively continue the Fluxus traditions. This conversation transcends the art world to embrace larger social and cultural aspirations. This key to understanding Fluxus has often been overlooked, and it partly explains the failure of mainstream art historians to understand Fluxus. The first developments that became Fluxus reveal a community of artists, architects, composers and designers with an articulate awareness of history in all its many dimensions. Throughout its history, Fluxus has continued this multidimensional dialog between the past, present and future. PUBLICATION ABSTRACT
Inflammation is associated with many disorders of preterm infants including periventricular leukomalacia, chronic lung disease, and necrotizing enterocolitis. Activated protein c (APC) has shown ...positive immunomodulatory effects.
We aimed to study neutrophil and monocyte function in response to lipopolysaccharide (LPS) and APC stimulation ex vivo in preterm infants <32 weeks gestation over the first week of life compared to neonatal and adult controls.
Peripheral blood was taken on day 1, 3, and 7 and stimulated with LPS in the absence or presence of APC. Expression of toll-like receptor 4 (TLR4) and CD11b and reactive oxygen intermediate (ROI) release from neutrophils and monocytes was examined by flow cytometry.
LPS induced neutrophil ROI in adults and preterm infants and was significantly reduced by APC. Baseline and LPS-induced monocyte ROI production in preterm neonates was increased compared to adult and term controls. Neutrophil TLR4 baseline expression was higher in term controls compared to preterm infants.
Increased systemic ROI release in preterm infants may mediate tissue damage, ROI was reduced by APC. However, due to the high risk of hemorrhage further examination of APC mutant forms with anti-inflammatory but decreased anticoagulant properties is merited.
Abstract
Background
Pre-school children’s daycare is associated with increased incidence of respiratory and diarrhoeal illnesses. While the incidence might be reduced if all unwell children were kept ...at home, parental employment pressures make this difficult when children are marginally unwell.
Methods
A discrete choice experiment (DCE) was conducted to identify what aspects of daycare policy and provision would affect parents’ decisions to keep marginally unwell children home. Prior qualitative research informed parameter choice. The DCE was accompanied by a best–worst scaling task examining preferences for four modifiable aspects of care: swapping unused daycare sessions, reimbursing unused sessions, daycare paracetamol policy and presence of a ‘quiet room’.
Results
Paracetamol guidelines and the presence of a quiet room had the strongest predicted influence on parents’ decision-making. Conditional on assumptions about the set-up of the daycare, introducing a ‘no paracetamol’ policy would result in a fall from 62 to 25% in mean predicted probabilities of a parent sending a marginally unwell child to nursery, while introducing a quiet room would increase the mean probability from 34 to 53%.
Conclusions
Daycare policy, particularly the use of paracetamol prior to attendance, could impact parents’ decisions to send unwell children to daycare, potentially influencing the transmission of children’s infectious illness.
Chronic pain is one of the most common, disabling, and expensive public health problems in the United States. Interdisciplinary pain management treatments that employ behavioral approaches have been ...successful in helping patients with chronic pain reduce symptoms and regain functioning. However, most patients lack access to such treatments. We are conducting a pragmatic clinical trial to test the hypothesis that patients who receive an interdisciplinary biopsychosocial intervention, the Pain Program for Active Coping and Training (PPACT), at their primary care clinic will have a greater reduction in pain impact in the year following than patients receiving usual care.
This is an effectiveness-implementation hybrid pragmatic clinical trial in which we randomize clusters of primary care providers and their patients with chronic pain who are on long-term opioid therapy to 1) receive an interdisciplinary behavioral intervention in conjunction with their current health care or 2) continue with current health care services. Our primary outcome is pain impact (a composite of pain intensity and pain-related interference) measured using the PEG, a validated three-item assessment. Secondary outcomes include pain-related disability, patient satisfaction, opioids dispensed and health care utilization. An economic evaluation assesses the resources and costs necessary to deliver the intervention and its cost-effectiveness compared with usual care. A formative evaluation employs mixed methods to understand the context for implementation in the participating health care systems.
This trial will inform the feasibility of implementing interdisciplinary behavioral approaches to pain management in the primary care setting, potentially providing a more effective, safer, and more satisfactory alternative to opioid-based chronic pain treatment.
Clinical Trials Registration Number: NCT02113592
A significant determinant of population health outcomes is the quality of care provided for noncommunicable diseases, obstetric, and pediatric care. We present results on clinical practice quality in ...these areas as measured among nearly 4,000 providers working at more than 1,000 facilities in 6 Eastern European and Central Asian countries.
This study was conducted between March 2011 and April 2013 in Albania, Armenia, Georgia, Kazakhstan, Kirov Province in Russia, and Tajikistan. Using a probability proportional-to-size sampling technique, based on number of hospital beds, we randomly selected within each country 42 hospitals and their associated primary health care clinics. Physicians and midwives within each clinical area of interest were randomly selected from each hospital and clinic and asked how they would care for simulated patients using Clinical Performance and Value (CPV) vignettes. Facility administrators were also asked to complete a facility survey to collect structural measures of quality. CPV vignettes were scored on a scale of 0% to 100% for each provider. We used descriptive statistics and
tests to identify significant differences in CPV scores between hospitals and clinics and rural vs. urban facilities, and ANOVA to identify significant differences in CPV scores across countries.
We found that quality of care, as concurrently measured by performance on CPV vignettes, was generally poor and widely variable within and between countries. Providers in Kirov Province, Russia, had the highest overall performance, with an average score of 70.8%, while providers in Albania and Tajikistan had the lowest average score, each at 50.8%. The CPV vignettes with the lowest scores were for multiple noncommunicable disease risk factors and birth asphyxia. A considerable proportion (11%) of providers performed well on the CPV vignettes, regardless of country, facility, or structural resources available to them.
Countries of Eastern Europe and Central Asia are challenged by poor performance as measured by clinical care vignettes, but there is potential for provision of high-quality care by a sizable proportion of providers. Large-scale assessments of quality of care have been hampered by the lack of effective measurement tools that provide generalizable and reliable results across diverse economic, cultural, and social settings. The feasibility of quality measurement using CPV vignettes in these 6 countries and the ability to combine results with individual feedback could significantly enhance strategies to improve quality of care, and ultimately population health.
Pediatric myelodysplastic syndromes (MDS) are rare diseases with a high rate of germline predisposition. In addition to GATA2 haploinsufficiency, SAMD9 and SAMD9L (SAMD9/9L) genes recently emerged as ...new MDS predisposition with monosomy 7. SAMD9/9L, located on 7q, are interferon-responsive genes involved in viral immunity, endosome fusion and translation, however their function remains elusive. To define the prevalence of germline SAMD9/9L mutations (SAMD9/9Lmut), we studied 669 children with MDS and detected mutually exclusive germline SAMD9/9Lmut or GATA2mut in 8% or 7% of cases. In total, 67 patients carried 58 germline SAMD9/9Lmut and additional 16 somatic SAMD9/9Lmut. Expression of germline SAMD9/9Lmut in HEK293 cells caused growth suppression consistent with gain-of-function effect, which was rescued by co-occurring somatic SAMD9/9Lmut. Knock-in of exemplary SAMD9/9Lmut in human iPSC cells resulted in decreased terminally differentiated myeloid cells, while lentiviral SAMD9/9Lmut overexpression in CD34+ cells elicited overt apoptosis. To decipher the molecular basis for somatic genetic rescue (SGR) associated with long-lasting remission in some patients, we performed bulk sequencing in all, and single cell sequencing (scDNAseq) in selected children. This analysis revealed SGR with loss or inactivation of germline SAMD9/9Lmut in 61% of cases. Among these, we found two types of somatic rescue in hematopoiesis: benign SGR with adaptive potential (revertant UPD7q, compensatory somatic SAMD9/9Lmut) in 51% of cases, and malignant, “maladaptive” SGR (-7 with loss of SAMD9/9Lmut) in 95%. Lastly, scDNAseq discovered multiple competing SGR events in single patients. To our knowledge, germline SAMD9/9Lmut are associated with the highest rate of somatic rescue mosaicism observed in humans and exemplify extremely high plasticity of hematopoiesis early in life.
This paper explores parents' experiences of breaking news and communicating to the child with cancer and their siblings, and identifies the supports parents request to help them in this role. This ...paper represents one component of a wider action research study which employed mixed methods to explore supports needed by parents of children with a cancer diagnosis in the Republic of Ireland.
This paper reports on the survey phase of the study, which involved the distribution of a postal survey to 550 families of children in cancer treatment and remission. This survey included four open-ended questions exploring parents' experiences of breaking news and communicating about the illness to the ill child and his/her siblings. Descriptive statistics on the profile of the parents were generated with computer software package SPSS and qualitative responses were analyzed using the survey questions as the initial framework.
Parents identified four interventions that helped ease the distress of these difficult conversations: coaching, resources, team engagement, and play therapy. Parents expressed concern for siblings, describing them as "suffering" and "forgotten". Parents requested four sibling-specific interventions: the creation of resources for siblings, therapeutic support, coaching for parent-sibling conversations, standardize a family meeting with the multi-disciplinary team that includes siblings.
This paper demonstrates how the practical supports requested by parents which are consistent with the principles embedded within the internationally defined psychosocial standards of care could be translated into practice when supporting parents to communicate with children in the context of pediatric cancer.
OBJECTIVE:To develop and compare methods for identifying natural alignments between ambulatory surgery centers (ASCs) and hospitals that anchor local health systems.
MEASURES:Using all-payer data ...from Florida’s State Ambulatory Surgery and Inpatient Databases (2005–2009), we developed 3 methods for identifying alignments between ASCS and hospitals. The first, a geographic proximity approach, used spatial data to assign an ASC to its nearest hospital neighbor. The second, a predominant affiliation approach, assigned an ASC to the hospital with which it shared a plurality of surgeons. The third, a network community approach, linked an ASC with a larger group of hospitals held together by naturally occurring physician networks. We compared each method in terms of its ability to capture meaningful and stable affiliations and its administrative simplicity.
RESULTS:Although the proximity approach was simplest to implement and produced the most durable alignments, ASC surgeon’s loyalty to the assigned hospital was low with this method. The predominant affiliation and network community approaches performed better and nearly equivalently on these metrics, capturing more meaningful affiliations between ASCs and hospitals. However, the latter’s alignments were least durable, and it was complex to administer.
CONCLUSIONS:We describe 3 methods for identifying natural alignments between ASCs and hospitals, each with strengths and weaknesses. These methods will help health system managers identify ASCs with which to partner. Moreover, health services researchers and policy analysts can use them to study broader communities of surgical care.
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