Caregivers’ perspectives on the social and physical environmental factors associated with the play of their children with palliative care needs: A Q methodology study

Children living with palliative care needs are less engaged in play, despite its importance in their lives. The environment may have a crucial role in supporting these children’s play. Understanding the importance and impact of environmental factors on children’s play is essential to being able to support their participation in play. Data were collected from caregivers (mostly parents) of children living with life-threatening/limiting conditions, who were between 5 and 11 years old. Thirty-nine participants were recruited from two children hospitals and two hospices in Kuwait and in the United Kingdom. The participants’ perspectives were explored using Q methodology. By-person factor analysis was used to explore the ranking of each statement. Content analysis was used to analyse the participants’ verbal comments. The most important environmental factors were the need for others to share play and get assistance to facilitate play. However, this is not always possible as these conditions, the life-threatening/limiting conditions, may be socially isolating. Children also experience limitations in accessing play resources that match their abilities and meet their play needs. Being aware and responsive to children’s play needs is essential for building appropriately supportive play environments for children living with life-threatening/life-limiting conditions

Play in Children With Life-Threatening and Life-Limiting Conditions: A Scoping Review

Importance: Play is essential to children and provides opportunities to promote their health and well-being. Children living with life-threatening and life-limiting conditions experience deprivation in play. Objective: To conduct a scoping review of studies that examined play of children with a life-threatening or life-limiting condition to explore their play characteristics and possible factors influencing their participation in play. Data Sources: A search of literature published between 1990 and 2017 was conducted in the health, social care, and built-environment fields. The scoping review included multiple searches in electronic databases, a gray literature search, and manual searches of relevant journals and reference lists of included articles. Study Selection and Data Collection: Defined criteria were used to select articles describing studies that examined the daily play of children ages 5–11 yr with life-threatening and life-limiting conditions; articles that focused on play as therapy or that used parents’ accounts of a service were excluded. The identified articles were critically appraised with the Critical Appraisal Skills Programme and the Joanna Briggs Institute Critical Appraisal Tools. Findings: Thirteen articles were reviewed. The findings indicate that children’s play is influenced by their health conditions and play opportunities and by the limited availability of appropriate play equipment and spaces allowing play and social interaction. Conclusions and Relevance: Available appropriate play opportunities need to be maximized for children living with life-threatening and life-limiting conditions. This goal can be achieved by understanding and considering the needs of these children and by facilitating environmental enablers and limiting barriers. What This Article Adds: Promoting the participation in play of children who live with life-threatening and life-limiting conditions is important to their health and well-being and can be achieved by targeting the cultural, social, and physical environmental factors that shape the children’s play

Current state of quality of life and patient-reported outcomes research

The 5th EORTC Quality of Life in Cancer Clinical Trials Conference presented the current state of quality of life and other patient-reported outcomes (PROs) research from the perspectives of researchers, regulators, industry representatives, patients and patient advocates and health care professionals. A major theme was the assessment of the burden of cancer treatments, and this was discussed in terms of regulatory challenges in using PRO assessments in clinical trials, patients' experiences in cancer clinical trials, innovative methods and standardisation in cancer research, innovative methods across the disease sites or populations and cancer survivorship. Conferees demonstrated that PROs are becoming more accepted and major efforts are ongoing internationally to standardise PROs measurement, analysis and reporting in trials. Regulators are keen to collaborate with all stakeholders to ensure that the right questions are asked and the right answers are communicated. Improved technology and increased flexibility of measurement instruments are making PROs data more robust. Patients are being encouraged to be patient partners. International collaborations are essential, because this work cannot be accomplished on a national level

Whole-genome sequencing reveals host factors underlying critical COVID-19

Critical COVID-19 is caused by immune-mediated inflammatory lung injury. Host genetic variation influences the development of illness requiring critical care1 or hospitalization2,3,4 after infection with SARS-CoV-2. The GenOMICC (Genetics of Mortality in Critical Care) study enables the comparison of genomes from individuals who are critically ill with those of population controls to find underlying disease mechanisms. Here we use whole-genome sequencing in 7,491 critically ill individuals compared with 48,400 controls to discover and replicate 23 independent variants that significantly predispose to critical COVID-19. We identify 16 new independent associations, including variants within genes that are involved in interferon signalling (IL10RB and PLSCR1), leucocyte differentiation (BCL11A) and blood-type antigen secretor status (FUT2). Using transcriptome-wide association and colocalization to infer the effect of gene expression on disease severity, we find evidence that implicates multiple genes—including reduced expression of a membrane flippase (ATP11A), and increased expression of a mucin (MUC1)—in critical disease. Mendelian randomization provides evidence in support of causal roles for myeloid cell adhesion molecules (SELE, ICAM5 and CD209) and the coagulation factor F8, all of which are potentially druggable targets. Our results are broadly consistent with a multi-component model of COVID-19 pathophysiology, in which at least two distinct mechanisms can predispose to life-threatening disease: failure to control viral replication; or an enhanced tendency towards pulmonary inflammation and intravascular coagulation. We show that comparison between cases of critical illness and population controls is highly efficient for the detection of therapeutically relevant mechanisms of disease

Feeding difficulties in young paediatric intensive care survivors: A scoping review

Background: Although feeding difficulties are commonly described amongst children with chronic diseases, those admitted to a paediatric intensive care unit (PICU) represent a mix of previously healthy children as well as those with pre-existing diseases. There is, however, a lack of evidence describing the prevalence and type of feeding difficulties amongst healthy children who survive a period of critical illness and the subsequent impact on growth and family life. The aim of this work was to complete a scoping review of evidence describing feeding difficulties amongst PICU-survivors. Method: Six electronic databases were searched from January 2000–October 2018. NICE Healthcare Databases Advanced Search website (https://hdas.nice.org.uk/) was used as a tool to complete multiple searches within multiple databases, including the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycInfo and Medline. Any studies considering feeding difficulties amongst previously healthy children following discharge from PICU or those which explored the parental/caregiver experiences were included. Results: As the initial search yielded only one study which fulfilled the inclusion criteria, the criteria was extended to include studies relating to feeding difficulties (post-discharge) amongst otherwise healthy ex-preterm infants (born &lt; 37 weeks gestational age) and infants/children with chronic diseases where feeding difficulties were described following a PICU admission. A review team screened and extracted the data of published qualitative and quantitative studies, using content analysis techniques. Of the 9622 articles identified from the searches, 22 full-text studies were reviewed with seven studies included. Four overarching categories represented the results: prevalence of feeding difficulties; risk factors and predictors for developing feeding difficulties; parental/carer experience and emotional response to feeding difficulties; and challenges in accessing feeding support. Conclusions: The results of this scoping review suggest there are gaps in the research, particularly those exploring the prevalence of feeding difficulties amongst previously healthy children and the negative impact this may have on family life. Future research should focus on addressing the extent of the problem and identifying risk factors, in addition to the potential development of toolkits for health care professionals to better support parents.</p

Computational Communities: A Marketplace for Federated Resources

Abstract. We define a grid middleware comprising federated resources that facilitates a globally optimal mapping of applications to the available resources while satisfying the goals of both users and resource providers. Applications are annotated with performance and behavioural informa-tion to enable the ‘best ’ resources to be found automatically. A compu-tational currency is used by resource providers and consumers to express their goals (e.g. completion time, resource utilisation, etc.) enabling a globally optimal mapping of applications to resources. We describe a prototype implementation of this architecture using Java and Jini.

The influence of maternal vulnerability and parenting stress on chronic pain in adolescents in a general population sample: The TRAILS study

Investigating possible psychosocial predictors of unexplained chronic pain in adolescents is crucial in understanding its development and prevention. A general population sample of adolescents (n=2230) from the TRAILS cohort study was investigated longitudinally to assess the influence of maternal vulnerability, in terms of anxiety, depression and stress, and parenting stress at age 10-12years, on the presence of chronic pain at age 12-15years. Of these adolescents, 269 (12.9%) reported experiencing chronic pain, of which 77% reported severe chronic pain and 22% reported multiple chronic pain. Maternal anxiety, maternal stress and higher levels of parenting stress were related to chronic pain at a later age. Subgroup analyses showed similar results for adolescents with severe chronic pain. Mediation analyses indicated that parenting stress mediates the effect between maternal anxiety, or stress, and chronic pain. The findings suggest that interventions to diminish maternal feelings of anxiety and stress, while in turn adjusting maternal behaviour, may prevent the development of chronic pain in adolescence

Classifying the severity of paediatric chronic pain - an application of the chronic pain grading

Background: The chronic pain grading (CPG), a standard approach to classify the severity of pain conditions in adults, combines the characteristics of pain intensity and pain-related disability. However, in children and adolescents, the CPG has only been validated in a school sample, but not in the actual target population, i.e., clinical populations with pain.Methods: In the present study, we applied the CPG to a tertiary sample of adolescents with chronic pain (n?=?1242). Construct validity, sensitivity to change and prognostic utility were examined.Results: Results indicate that most adolescents were equally classified into the three higher severity grades. Higher CPG classification was associated with more pain locations, higher pain frequency, longer pain duration, extensive use of health care and more depressive symptoms. Adolescents with a high CPG received recommendations for inpatient treatment more often; however, the prognostic utility for therapy recommendation - as operationalized in this study - was low. Sensitivity to change was assessed via reassessment at follow-up for a subsample of 490 adolescents. The majority of adolescents improved to a less severe CPG; changes were more common in the high severity range.Conslusion: The CPG may be applied to adolescent tertiary care samples and to assess outcomes in clinical trials. However, in this study it was not appropriate to assign adolescent patients to different treatment options. Future work should focus on developing a comprehensive assessment tool for assigning patients to different treatments