Family resilience and adaptive coping in children with juvenile idiopathic arthritis: protocol for a systematic review

Background  This systematic review is the first step in a study investigating the resilience methods and processes in families of children with juvenile idiopathic arthritis. In particular, this review will focus on chronic or persistent pain, as a common symptom of juvenile idiopathic arthritis, which is the most common rheumatic disease in childhood. The experience of persistent pain can add to the functional disability associated with juvenile idiopathic arthritis. Resilience has relevance to all areas of paediatric psychology, and targeted attention to child, sibling, and parent strengths within the context of paediatric chronic pain and juvenile idiopathic arthritis in particular will augment the field on numerous levels. The objective is to determine which resilience processes are associated with a favourable quality of life in terms of academic, communication, emotional, interpersonal, physical, psychological, and social well-being in families of children with chronic pain associated with JIA.  Methods/design  This systematic review will be conducted and reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement and the PRESS (Peer Review of Electronic Search Strategies) guideline.  Longitudinal, cross-sectional, and treatment studies written in English will be included, as will grey literature (i.e. conference abstracts and dissertations).  Studies involving participants who are 6–18years of age, have been diagnosed with juvenile idiopathic arthritis, are experiencing chronic pain, and are currently undergoing treatment will be included regardless of sex, arthritis type, and type of treatment. Studies including siblings who are 6–18years of age and the patient’s parents will be included.  Discussion  Research exploring resilience within the adult population is accruing. Shifting our focus to protective factors of resilience in the context of paediatric chronic pain, specifically juvenile idiopathic arthritis, is a novel and promising pursuit that has the potential to optimize and inform future clinical practice and interventions. A better understanding of the role of reliance in family adaptation will facilitate the development of more effective treatment approaches and lay the foundation for more effective self-management in paediatric chronic pain.  Systematic review registration  This protocol is registered with the International Prospective Register of Systematic Reviews (PROSPERO) database (registration: CRD42016047226)

Child and family adaptation to Juvenile Idiopathic Arthritis - a systematic review of the role of resilience resources and mechanisms

Background: Juvenile Idiopathic Arthritis (JIA) is the most common rheumatic disease in childhood, with chronic pain being a main symptom. JIA symptoms can lead to substantial disability in children and their families. While preliminary evidence reveals the potential beneficial role of resilience in dealing with chronic pain, research on the role of resilience in how families of a child with JIA cope with pain-related symptoms is scant and dispersed. Objectives: Using the framework of the Ecological Resilience-Risk Model, this review aims to identify (1) family characteristics that are associated with both risk and resilience in children with JIA and (2) the contribution of individual and parental resilience mechanisms and resources to resilience outcomes in children with JIA and their families. Methods: MEDLINE, EMBASE, EBSCO, Psycharticles, and PsycINFO were systematically searched. Longitudinal, cross-sectional, and treatment studies written in English with a focus on resilience resources and/or mechanisms in families of a child (6-18 years) with JIA were included. The original search (July 2016) produced 415 articles, with a final sample of 6 articles remaining after screening. An updated search (July 2018) did not identify new articles, but identified one extra article through personal communications. The 7 articles were included in a narrative review and study quality was assessed. Results: Limited research was available on the role of family characteristics, with just one study revealing how family dysfunction is related to reduced child resilience. Studies evaluating the role of individual resilience mechanisms and resources most commonly assessed resilience outcomes in terms of recovery and sustainability outcomes, such as health-related quality of life (HRQL) and functional disability. The findings revealed that children’s psychological flexibility, self-efficacy, adherence, pain acceptance and perceived social support contribute to resilience outcomes. Findings were inconclusive for the influence of coping strategies, such as seeking social support. Conclusions: While our knowledge is growing, a better understanding of how familial and individual resilience resources and mechanisms influence adjustment to chronic pain as part of JIA is needed and can stimulate development of targeted interventions to enhance outcomes for children with JIA

Accessing and sustaining work after Service: the role of active labour market policies (ALMP) and implications for HRM

This article considers the extent to which Active Labour Market Policies (ALMPs) support the sustained inclusion of veterans in the civilian labour market. Drawing on the first in-depth research into veteran’s interactions with the UK’s Public Employment Services (PES) and other contracted providers, we present analysis of qualitative longitudinal data from 68 veterans. We demonstrate the important role ALMPs play in mediating the employment relationship, showing how veterans claiming out-of-work benefits are typically either ‘pushed’ towards inappropriate jobs or ‘parked’ through their exclusion from employment support when deemed unfit for work. This not only exposes veterans and other jobseekers to poor quality work but undermines both job match and inclusive employment practices. Furthermore, the potential for more positive outcomes through engagement with employers and HRM practitioners is not being realised. This is significant for veterans in the UK and beyond, where policymakers make broader commitments to post-Service integration into civilian employment. We critique Work First approaches centred on those deemed work ready and contribute to broader theorisation around interactions between the state and HRM, arguing the need for pluralist approaches which incorporate ALMPs

Military veterans and welfare reform: bridging two policy worlds through qualitative longitudinal research

In recent years, there has been an increasing focus in the UK on the support provided to those who have served in the Armed Forces, with the publication of the Armed Forces Covenant (2011), the ten year Strategy for our Veterans (2018) and the creation of the first ever Office for Veterans’ Affairs (2019). There is also an important and growing body of research – including longitudinal research – focusing on transitions from military to civilian life, much of which adopts a quantitative approach. At the same time, the UK has witnessed a period of unprecedented welfare reform. However, to date, research focused on veterans’ interactions with the social security system has been largely absent, particularly from a qualitative perspective. This article draws on the authors’ experiences of undertaking qualitative longitudinal research (QLR) to address this significant knowledge gap. We reflect on how QLR was essential in engagement with policy makers enabling the research to bridge the two parallel policy worlds of veterans’ support and welfare reform and leading to significant policy and practice impact

Comparing Written Versus Pictorial Asthma Action Plans to Improve Asthma Management and Health Outcomes Among Children and Adolescents: Protocol of a Pilot and Feasibility Randomized Controlled Trial

Background: Asthma is an important focus for pediatric health research as management of asthma symptoms is a significant challenge, and morbidity and mortality among youths with asthma remain prevalent. Treatment guidelines for asthma recommend a written asthma action plan (WAAP) that summarizes individualized instructions for daily medication use. However, WAAPs are typically written at a seventh- to ninth-grade reading level, which can be a barrier to young people in understanding their treatment, having confidence in using a WAAP, and engaging with asthma education. Objective: Utilizing a feasibility and pilot randomized controlled trial (RCT) design, the objective of the Take Action for Asthma Control study is to test a symptom-based, computer-generated pictorial asthma action plan (PAAP) in comparison with a standard WAAP and assess the feasibility and acceptability of the asthma action plan (AAP) intervention and study procedures. The study has 3 aims: (1) estimate the effect sizes of PAAPs compared with WAAPs on outcomes (eg, AAP knowledge and medication adherence), (2) evaluate feasibility and acceptability of AAP intervention and RCT procedures from the perspectives of key stakeholders, and (3) establish whether parent and youth literacy levels are associated with treatment outcomes. Methods: This feasibility and pilot RCT is a block randomized, 2-arm, parallel-group clinical trial, lasting 6 months in duration. At baseline, participants will be randomly assigned to receive a PAAP or WAAP generated for them and reviewed with them by their asthma physician. Study procedures will take place over 4 separate time points: a baseline clinic appointment, 1-month telephone follow-up, and 3- and 6-month clinic-based follow-ups. At each time point, data will be collected related to the main outcomes: AAP knowledge, AAP satisfaction, asthma control, pulmonary function, and adherence to daily asthma medication. A sample size of up to 60 participants (aged 8-17 years) will be recruited. Feasibility and acceptability data will be collected via one-to-one qualitative interviews with providers involved in the study and a subgroup of families that participate in the study. Results: Recruitment and data collection began in May 2017 and were completed in October 2018. Conclusions: This pilot and feasibility study will test the potential efficacy, feasibility, and acceptability of an AAP intervention and study procedures. The findings will inform the design and delivery of a future definitive trial to assess the efficacy of PAAPs versus WAAPs in supporting asthma self-management among children and adolescents. International Registered Report Identifier (IRRID): DERR1-10.2196/1173

Multiwavelength Observations of A0620-00 in Quiescence

[Abridged.] We present multiwavelength observations of the black hole binary system, A0620-00. Using the Cosmic Origins Spectrograph on the Hubble Space Telescope, we have obtained the first FUV spectrum of A0620-00. The observed spectrum is flat in the FUV and very faint (with continuum fluxes \simeq 1e - 17 ergs/cm^2/s/A). We compiled the dereddened, broadband spectral energy distribution of A0620-00 and compared it to previous SEDs as well as theoretical models. The SEDs show that the source varies at all wavelengths for which we have multiple samples. Contrary to previous observations, the optical-UV spectrum does not continue to drop to shorter wavelengths, but instead shows a recovery and an increasingly blue spectrum in the FUV. We created an optical-UV spectrum of A0620-00 with the donor star contribution removed. The non-stellar spectrum peaks at \simeq3000 {\deg}A. The peak can be fit with a T=10,000 K blackbody with a small emitting area, probably originating in the hot spot where the accretion stream impacts the outer disk. However, one or more components in addition to the blackbody are needed to fit the FUV upturn and the red optical fluxes in the optical-UV spectrum. By comparing the mass accretion rate determined from the hot spot luminosity to the mean accretion rate inferred from the outburst history, we find that the latter is an order of magnitude smaller than the former, indicating that \sim90% of the accreted mass must be lost from the system if the predictions of the disk instability model and the estimated interoutburst interval are correct. The mass accretion rate at the hot spot is 10^5 the accretion rate at the black hole inferred from the X-ray luminosity. To reconcile these requires that outflows carry away virtually all of the accreted mass, a very low rate of mass transfer from the outer cold disk into the inner hot region, and/or radiatively inefficient accretion.Comment: ApJ, accepte

Sedimentary carbon on the continental shelf : emerging capabilities and research priorities for Blue Carbon.

This work was supported by Cefas internal Seedcorn self-investment funding under the project DP440: Blue carbon within climate mitigation and ecosystem service approaches to natural asset assessments, and by Cefas’ Ecosystem Theme science theme.Continental shelf sediments store large amounts of organic carbon. Protecting this carbon from release back into the marine system and managing the marine environment to maximize its rate of accumulation could both play a role in mitigating against climate change. For these reasons, in the context of an expanding ‘Blue Carbon’ concept, research interest in the quantity and vulnerability of carbon stored in continental shelf, slope, and deep ocean sediments is increasing. In these systems, carbon storage is physically distant from carbon sources, altered between source and sink, and disturbed by anthropogenic activities. The methodological approaches needed to obtain the evidence to assess shelf sea sediment carbon manageability and vulnerability within an evolving blue carbon framework cannot be transferred directly from those applied in coastal vegetated ‘traditional’ blue carbon habitats. We present a ‘toolbox’ of methods which can be applied in marine sediments to provide the evidence needed to establish where and when marine carbon in offshore sediments can contribute to climate mitigation, focusing on continental shelf sediments. These methods are discussed in the context of the marine carbon cycle and how they provide evidence on: (i) stock: how much carbon is there and how is it distributed? (ii) accumulation: how rapidly is carbon being added or removed? and (iii) anthropogenic pressures: is carbon stock and/or accumulation vulnerable to manageable human activities? Our toolbox provides a starting point to inform choice of techniques for future studies alongside consideration of their specific research questions and available resources. Where possible a stepwise approach to analyses should be applied in which initial parameters are analysed to inform which samples, if any, will provide information of interest from more resource-intensive analyses. As studies increasingly address the knowledge gaps around continental shelf carbon stocks and accumulation – through both sampling and modelling – the management of this carbon with respect to human pressures will become the key question for understanding where it fits within the blue carbon framework and within the climate mitigation discourse.Publisher PDFPeer reviewe

A core outcomes set for clinical trials of interventions for young adults with type 1 diabetes: an international, multi-perspective Delphi consensus study

BACKGROUND: Achieving consensus from a range of relevant stakeholders about an agreed set of core outcomes to be measured and reported as a minimum in clinical trials has the potential to enhance evidence synthesis and make findings more relevant and applicable. Intervention research to improve outcomes for young adults with type 1 diabetes (T1DM) is hampered by inconsistent use of outcome measures. This population frequently struggles to manage their condition and reports suboptimal clinical outcomes. Our aim was to conduct an international, e-Delphi consensus study to identify a core outcome set (COS) that key stakeholders (young adults with T1DM, diabetes health professionals, diabetes researchers and diabetes policy makers) consider as essential outcomes for future intervention research. METHODS: Using a list of 87 outcomes generated from a published systematic review, we administered two online surveys to a sample of international key stakeholders. Participants in the first survey (survey 1; n = 132) and the second survey (survey 2; n = 81) rated the importance of the outcomes. Survey 2 participants received information on total mean rating for each outcome and a reminder of their personal outcome ratings from Survey 1. Survey 2 results were discussed at a consensus meeting and participants (n = 12: three young adults with T1DM, four diabetes health professionals, four diabetes researchers and one diabetes policy maker) voted on outcomes. Final core outcomes were included provided that 70% of consensus group participants voted for their inclusion. RESULTS: Eight core outcomes were agreed for inclusion in the final COS: measures of diabetes-related stress; diabetes-related quality of life; number of severe hypoglycaemic events; self-management behaviour; number of instances of diabetic ketoacidosis (DKA); objectively measured glycated haemoglobin (HbA1C); level of clinic engagement; and perceived level of control over diabetes. CONCLUSIONS: This study is the first to identify a COS for inclusion in future intervention trials to improve outcomes for young adults with T1DM. Use of this COS will improve the quality of future research and increase opportunities for evidence synthesis. Future research is necessary to identify the most robust outcome measure instruments