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Background: Parents of infants admitted to the Neonatal Intensive Care Unit (NICU) are at risk of psychological distress and NICU-related stress. However, parents of infants admitted to NICU for cardiac surgery are an under-researched population.Aims: Identify levels of NICU-related stress, and levels of psychological distress, reported by parents of infants admitted to the NICU for cardiac surgery.Study Design: Observational study.Subjects: 69 parents of infants admitted to the NICU for cardiac surgery (cardiac group) and 142 parents of healthy infants (control group).Outcome Measures: Questionnaire packs provided to parents prior to discharge (time-point 1), and at six and 12months corrected age included: Hospital Anxiety and Depression Scale, Coping Inventory for Stressful Situations, and Family Support Scale. The Parental Stressor Scale:NICU was administered to the cardiac group at time-point 1.Results: The cardiac group reported (i) that parental role alteration was the most stressful aspect of the NICU and (ii) higher scores for anxiety and depression than the control group at all three time-points, with the highest levels reported during the NICU stay. Correlation analyses indicated (i) stress associated with the sights and sounds of the NICU, and the appearance and behaviour of the infant in the NICU, had a significant positive association with anxiety and depression, and (ii) a significant negative relationship between anxiety and task-focused coping.Conclusions: An individualised parent-targeted intervention aimed at reducing stress associated with the NICU and enhancing task-focused coping style may help to reduce levels of anxiety and depression within this group of parents. [ABSTRACT FROM AUTHOR]

Background: Project ECHO (Extension for Community Healthcare Outcomes) is an internationally recognised tele-mentoring intervention that has been implemented in over 40 countries. The model connects specialist healthcare providers (hubs) with providers in primary and community practice (spokes), often in rural and isolated areas. Objectives: Project ECHO aims to improve healthcare provider’s skills, confidence and knowledge, and to create a community of practitioners using the hub and spoke model. Analysing interview data from 27 Project ECHO network leads and participants in Northern Ireland, this study sought to assess the impact of Project ECHO on improving provider, patient and health system outcomes. Results: Having access to a specialist, a space to share experiences, and being able to disseminate up-to-date best practice were all cited as improving provider knowledge. Providers described improved outcomes for patients such as receiving a new treatment or an efficient referral. Providers reported being more confident in managing patients and thus were less likely to refer unnecessarily, and links between providers at primary and secondary levels being improved. ECHO was deemed an acceptable methodology in terms of format and in improving access to education and training by removing geographic barriers and reducing time barriers. Conclusions: This is one of the first studies to qualitatively analyse outcomes across a number of different ECHO networks, and involving both health and social care networks. The results indicate the benefit of ECHO in improving provider, patient and healthcare outcomes. This has implications for future resourcing decisions, particularly within the context of COVID-19 in which virtual and online training is necessitated by social distancing requirements. This study has implications for wider international contexts in which ECHO may be piloted to address similar challenges. Key messages: Participants across our study described Project ECHO as having a positive impact on provider, patient and health systems outcomes. Project ECHO was described as an acceptable approach to training and education that improved access through removing geographic barriers. [ABSTRACT FROM AUTHOR]

This study assesses the perceived impact and benefits of Project ECHO (Extension for Community Healthcare Outcomes), a tele-mentoring intervention for health and social care providers, patients and the health system in Northern Ireland. Having access to a specialist, a space to share experiences, and being able to disseminate up-to-date best practice were all cited as improving provider knowledge as well as improving quality of care for patients. Healthcare providers reported being more confident in managing patients and that relationships had been improved between different levels of the health system. ECHO was described as improving access to education and training by removing geographic and time barriers. This is one of the first studies to qualitatively analyse impact across a number of different clinical and social care ECHO networks. The results strongly indicate the perceived benefit of ECHO in improving provider, patient and health system outcomes such as increased healthcare provider knowledge and confidence to manage patients at primary levels of the health system. This has implications for future service design, particularly within the context of COVID-19 in which virtual and online training is necessitated by social distancing requirements.

Background: There are a growing number of children and young people (CYP) with chronic health needs or complex disabilities. Increasingly, CYP with life-limiting or life-threatening conditions are surviving into adulthood. Communication between CYP, their family, and health professionals can be challenging. The use of a personal health record (PHR) is one potential strategy for improving communication by promoting CYP's health advocacy skills. However, PHR implementation has proved difficult due to technical, organisational, and professional barriers. The aim of this realist review is to identify the factors, which help or hinder the use of PHRs with CYP living with a complex health condition., Methods: Systematic realist review. Literature was sourced from six databases: Medline, Embase, CINAHL, PsychInfo, The Cochrane Library, and Science Direct (from 1946 to August Week 3 2018). The web was searched to identify grey literature. Articles were sourced from reference lists of included studies. Data were extracted using a standardised data extraction form. Two reviewers completed data extraction and synthesis. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme tool., Results: Nine articles were included. Contextual factors, which helped implementation, included the CYP having a high perception of need for a PHR and a high level of desire for self-management. Service providers and CYP need knowledge about the purpose and benefits of the PHR, and organisations need a dedicated person to facilitate PHR use. Mechanisms triggered by the PHR included improved understanding and knowledge of health care condition(s) for CYP, an increased feeling of control over condition(s), and more active engagement in their health care. Outcomes for CYP included improved self-advocacy and communication., Conclusion: Clearer definitions of which young people would benefit from using a PHR must be established to inform which organisations and service providers would be best suited to PHR implementation., (© 2019 The Authors. Child: Care, Health and Development published by John Wiley & Sons Ltd.)

Background: The Carer Support Needs Assessment Tool (CSNAT) intervention is an evidence-based, person-centered approach to carer assessment and support within palliative care. As such, it requires a change in practice from a practitioner- to a carer-led assessment and support process. A paucity of research has investigated factors affecting implementation of evidence-based interventions within palliative care., Objective: To examine differences between high and low adopters of the CSNAT intervention in terms of practitioner attitudes to the intervention and organizational context., Methods: Phase IV study of the implementation of the CSNAT intervention at scale in 36 UK palliative care services over 6 months. Survey at baseline and 6 months of practitioners at implementation sites, informed by the Promoting Action on Research Implementation in Health Services (PARIHS) Framework. Survey tools: (a) questionnaire to assess attitudes to the CSNAT intervention; (b) Alberta Context Tool (ACT) to assess organizational context. Monthly data on intervention use enabled service classification as "high" or "low" adopters., Results: Surveys returned at baseline were 157/462 and at 6 months were 69/462. Compared with low adoption services, high adopters were more likely to be hospice, at home, and day services; have a higher ratio of internal facilitators to total staff numbers; and higher scores for ACT "informal interactions" denoting more discussions about care between colleagues. Both had similarly positive attitudes to the CSNAT intervention pre-implementation, but by 6 months low adoption services developed significantly more negative attitudes, while high adoption services attitudes mostly remained the same or improved., Linking Evidence to Action: Implementation may be more successful for services that offer regular opportunities to use the intervention in practice, have sufficient levels of facilitators, stimulate more staff discussion, and encourage maintenance of positive motivation. Implementation of person-centered interventions needs to plan for such factors. This has informed an implementation toolkit for the CSNAT intervention., (© 2018 Sigma Theta Tau International.)

It is important to ensure regional variances are considered when setting future end-of-life research priorities, given the differing demographics and service provision. This project sought to identify end-of-life research priorities within Greater Manchester (United Kingdom). Following an initial scoping exercise, six topics within the 10 national priorities outlined by The Palliative and end-of-life care Priority Setting Partnership were selected for exploration. A workshop involving 32 healthcare professionals and a consultation process with 26 family carers was conducted. Healthcare professionals and carers selected and discussed the topics important to them. The topics selected most frequently by both healthcare professionals and carers were 'Access to 24 hour care', 'Planning end-of-life care in advance' and 'Staff and carer education'. Healthcare professionals also developed research questions for their topics of choice which were refined to incorporate carers' views. These questions are an important starting point for future end-of-life research within Greater Manchester.

Objectives: Early remission is the current treatment strategy for patients with inflammatory polyarthritis (IP) and RA. Our objective was to identify baseline factors associated with achieving remission: sustained (SR), intermittent (IR) or never (NR) over a 5-year period in patients with early IP., Methods: Clinical and demographic data of patients with IP recruited to the Norfolk Arthritis Register (NOAR) were obtained at baseline and years 1, 2, 3 and 5. Remission was defined as no tender or swollen joints (out of 51). Patients were classified as NR or PR, respectively, if they were in remission at: no assessment or ⩾3 consecutive assessments after baseline, and IR otherwise. Ordinal regression and a random effects model, respectively, were used to examine the association between baseline factors, remission group and HAQ scores over time., Results: A total of 868 patients (66% female) were included. Of these, 54%, 34% and 12% achieved NR, IR and SR, respectively. In multivariate analysis, female sex (odds ratio, OR 0.47, 95% CI: 0.35, 0.63), higher tender joint count (OR = 0.94, 95% CI: 0.93, 0.96), higher HAQ (OR = 0.59, 95% CI: 0.48, 0.74), being obese (OR = 0.70, 95% CI: 0.50, 0.99), hypertensive (OR = 0.67, 95% CI: 0.50, 0.90) or depressed (OR = 0.74, 95% CI: 0.55, 1.00) at baseline were independent predictors of being in a lower remission group. IR and SR were associated with lower HAQ scores over time and lower DAS28 at year 5., Conclusion: Women with higher tender joint count and disability at baseline, depression, obesity and hypertension were less likely to achieve remission. This information could help when stratifying patients for more aggressive therapy., (© The Author 2016. Published by Oxford University Press on behalf of the British Society for Rheumatology.)

Community nurses play an important role in providing palliative care and support for patients and carers at home. The Carer Support Needs Assessment Tool (CSNAT) provides practitioners with an evidence-based comprehensive tool to use with carers in palliative home care. As a practice tool, the CSNAT uses a person-centred approach-that is, the process of carer assessment and support is facilitated by practitioners but is carerled. In this paper, the CSNAT research team provides an overview of the development of the tool and the benefits for both carers and practitioners arising from using the CSNAT as a person-centred approach in practice. The authors outline the five stages of the CSNAT approach to assist practitioners wishing to implement the CSNAT in practice.