Identifying integrated health services and social care research priorities in kidney disease in Wales: research prioritisation exercise

Objectives To identify the shared research priorities of patients, caregivers and multidisciplinary renal health and social care professionals across Wales for integrated renal health and social care in Wales.Design Research priority setting exercise adapted from the James Lind Alliance national priority setting partnership framework in UK healthcare.Setting Two workshops: one in North Wales with patients, caregivers and multidisciplinary renal health and social care professionals and one in South Wales with the Welsh Renal Clinical Network (commissioners of renal services in Wales). Additional input provided from stakeholders via email correspondence and face to face communications.Participants Academics n=14, patients n=16, family/carers n=6, multidisciplinary renal healthcare professionals n=40, local authority councils n=3, renal charities n=6 wider third sector organisations n=8, renal industries n=4, Welsh government social care n=3, renal service commissioners n=8.Results 38 research priority questions grouped into 10 themes were agreed. The themes included: (1) integrating health and social care, (2) education, (3) acute kidney injury, (4) chronic kidney disease and cardiovascular disease, (5) transplantation, (6) dialysis, (7) personalised medicines, (8) cross-cutting priorities, (9) specific social contexts and (10) transitional services and children. Research questions were broad and covered a range of health and social care topics. Patient and professional perspectives broadly overlapped. Research priority setting activities revealed gaps in knowledge in overall service provision and potential areas for service improvement.Conclusions Mapping priorities in health services and social care highlighted the research needed to support renal health services delivery and commissioning in Wales

Why is transition between child and adult services a dangerous time for young people with chronic kidney disease?:A mixed-method systematic review

<div><p>Young people age 14–25 years with chronic kidney disease have been identified as generally having poor health outcomes and are a high-risk group for kidney transplant loss due in part to poor self-management. This raises a key question as to what happens during transition from child to adult services? This paper presents a mixed-method systematic review of health and social care evidence concerning young people with chronic kidney disease transitioning from child to adult health and social care services. Quantitative and qualitative evidence were synthesised in streams followed by an overarching synthesis. Literature searches (2000 to March 2017) were conducted using Pubmed, BioMed Central and Cochrane Library, grey literature sources ZETOC, <a href="http://.gov.uk" target="_blank">.gov.uk</a>, third sector organisations, NHS Evidence, SCIE, TRIP, Opengrey. Snowball searching was conducted in the databases Ovid, CINAHL, ISI Web of Science, Scopus and Google Scholar. Of 3,125 records screened, 60 texts were included. We found that while strategies to support transition contained consistent messages, they supported the principle of a health-dominated pathway. Well-being is mainly defined and measured in clinical terms and the transition process is often presented as a linear, one-dimensional conduit. Individual characteristics, along with social, familial and societal relationships are rarely considered. Evidence from young people and their families highlights transition as a zone of conflict between independence and dependency with young people feeling powerless on one hand and overwhelmed on the other. We found few novel interventions and fewer that had been evaluated. Studies were rarely conducted by allied health and social care professionals (e.g. renal social workers and psychologists) as part of multi-disciplinary renal teams. We conclude that there is a lack of good evidence to inform providers of health and social care services about how best to meet the needs of this small but vulnerable cohort.</p></div

A methodological review of resilience measurement scales

BACKGROUND: The evaluation of interventions and policies designed to promote resilience, and research to understand the determinants and associations, require reliable and valid measures to ensure data quality. This paper systematically reviews the psychometric rigour of resilience measurement scales developed for use in general and clinical populations. METHODS: Eight electronic abstract databases and the internet were searched and reference lists of all identified papers were hand searched. The focus was to identify peer reviewed journal articles where resilience was a key focus and/or is assessed. Two authors independently extracted data and performed a quality assessment of the scale psychometric properties. RESULTS: Nineteen resilience measures were reviewed; four of these were refinements of the original measure. All the measures had some missing information regarding the psychometric properties. Overall, the Connor-Davidson Resilience Scale, the Resilience Scale for Adults and the Brief Resilience Scale received the best psychometric ratings. The conceptual and theoretical adequacy of a number of the scales was questionable. CONCLUSION: We found no current 'gold standard' amongst 15 measures of resilience. A number of the scales are in the early stages of development, and all require further validation work. Given increasing interest in resilience from major international funders, key policy makers and practice, researchers are urged to report relevant validation statistics when using the measures

Evaluation of health and social care provision for ventilator-dependent children in the UK : costs and outcomes

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