13 research outputs found
Identifying researcher learning needs to develop online training for UK researchers working with administrative data: CENTRIC training
Background
The use of administrative data in health and social science research continues to expand, with increased availability of data and interest from funders. Researchers, however, continue to experience delays in access, storage and sharing of administrative data. Training opportunities are limited and typically specific to individual data providers or focussed on the analytical aspects of working with administrative data. The CENTRIC study was funded by the Information Commissioners Office, with the aim of developing a broader training curriculum for researchers working with administrative data in the UK.
Methods
A mixed-methods design informed curriculum content, including surveys with researchers, focus group discussions with data providers and workshops with members of the public. Researchers were identified from relevant administrative data networks and invited to participate in an online survey identifying training needs. Data providers were approached with a request to input to a face-to-face or online meeting with two members of the research team about their experiences of working with researchers. Data were analysed within the broad framework of the interview schedule, free text responses in the survey were analysed thematically.
Results
107 researchers responded to the online survey and four data providers participated in the focus groups. We identified five main themes, relating to research training needs for UK researchers working with administrative data: communication; timelines; changes & amendments; future-proofing applications; and, the availability of training and support. Data providers either provided additional evidence on these learning needs or ways to address identified challenges. Six modules were developed addressing these training needs. Quotes from the survey and focus groups are used anonymously in the online training modules.
Conclusion
The CENTRIC online training curriculum was launched in September 2020 and is available, free of charge for UK researchers. CENTRIC specifically addresses commonly identified training needs of researchers working with administrative data
Care-experienced cHildren and young peoples Interventions to improve Mental health and wEll-being outcomes: Systematic review (CHIMES) protocol
Introduction The mental health and well-being of children and young people who have been in care (ie, care-experienced) are a priority. There are a range of interventions aimed at addressing these outcomes, but the international evidence-base remains ambiguous. There is a paucity of methodologically robust systematic reviews of intervention effectiveness, with few considering the contextual conditions under which evaluations were conducted. This is important in understanding the potential transferability of the evidence-base across contexts. The present systematic review will adopt a complex systems perspective to synthesise evidence reporting evaluations of mental health and well-being interventions for care-experienced children and young people. It will address impact, equity, cost-effectiveness, context, implementation and acceptability. Stakeholder consultation will prioritise a programme theory, and associated intervention, that may progress to further development and evaluation in the UK.
Methods and analysis We will search 16 bibliographic databases from 1990 to June 2020. Supplementary searching will include citation tracking, author recommendation, and identification of evidence clusters relevant to included evaluations. The eligible population is children and young people (aged ≤25 years) with experience of being in care. Outcomes are (1) mental, behavioural or neurodevelopmental disorders; (2) subjective well-being; (3) self-harm; suicidal ideation; suicide. Study quality will be appraised with methodologically appropriate tools. We will construct a taxonomy of programme theories and intervention types. Thematic synthesis will be used for qualitative data reporting context, implementation and acceptability. If appropriate, meta-analysis will be conducted with outcome and economic data. Convergent synthesis will be used to integrate syntheses of qualitative and quantitative data.
Ethics and dissemination We have a comprehensive strategy for engagement with care-experienced children and young people, carers and social care professionals. Dissemination will include academic and non-academic publications and conference presentations. Ethical approval from Cardiff University’s School of Social Sciences REC will be obtained if necessary
Physical activity self-management and coaching compared to social interaction in huntington disease: results from the ENGAGE-HD randomized, controlled, pilot feasibility trial.
Abstract Background: Self-management and self-efficacy for physical activity is not routinely considered in neurologic rehabilitation. Objective: We assessed feasibility and outcomes of a 14 week physical activity self-management and coaching intervention compared with social contact in Huntington's disease (HD) to inform the design of a future full-scale trial. Design: Assessor blind, multi-site, randomized pilot feasibility trial. Setting: Participants were recruited and assessed at baseline, 16 weeks following randomisation, and then again at 26 weeks in HD specialist clinics with intervention delivery by trained coaches in the participants’ homes. Patients and Intervention: People with HD were allocated to the ENGAGE-HD physical activity coaching intervention or a social interaction intervention. Measurements: Eligibility, recruitment, retention and intervention adherence were determined at 16 weeks. Other outcomes of interest included measures of functional, home and community mobility, self-efficacy, physical activity and disease-specific measures of motor and cognition. Fidelity and costs for both the physical activity and social comparator interventions were established. Results: Forty % (n=46) of eligible patients were enrolled and 22 randomised to the physical intervention and 24 to social intervention. Retention rates in the physical intervention and social intervention were 77% and 92% respectively. Minimum adherence criteria were achieved by 82% of participants in the physical intervention and 100% in the social intervention. There was no indication of between group treatment effects on function, however increases in self-efficacy for exercise and self-reported levels of physical activity in the physical intervention lends support to our pre-defined intervention logic model. Limitations: The use of self-report measures may have introduced bias. Conclusions: An HD physical activity self-management and coaching intervention is feasible and worthy of further investigation.Health and Care Research Wale
Development and Delivery of a Physical Activity Intervention for People With Huntington Disease:Facilitating Translation to Clinical Practice
Background and Purpose: We studied the development and delivery of a 14-week complex physical activity intervention for people with Huntington disease, where detailed information about the intervention was fully embedded in the trial design process.
Methods: Intervention Development: The intervention was developed through a series of focus groups. The findings from the focus groups informed the development of a logic model for the physical activity intervention that was broadly consistent with the framework of self-determination theory. Intervention Delivery: Key components underpinning the delivery of the intervention were implemented including a defined coach training program and intervention fidelity assessment methods. Training of coaches (physical therapists, occupational therapists, research nurses, and exercise trainers) was delivered via group and 1:1 training sessions using a detailed coach's manual, and with ongoing support via video calls, and e-mail communication as needed. Detailed documentation was provided to determine costs of intervention development and coach training.
Results: Intervention delivery coaches at 8 sites across the United Kingdom participated in the face-to-face training. Self-report checklists completed by each of the coaches indicated that all components of the intervention were delivered in accordance with the protocol. Mean (standard deviation) intervention fidelity scores (n = 15), as measured using a purpose-developed rating scale, was 11 (2.4) (out of 16 possible points). Coaches' perceptions of intervention fidelity were similarly high. The total cost of developing the intervention and providing training was [pounds]30,773 ($47,042 USD).
Discussion and Conclusions: An important consideration in promoting translation of clinical research into practice is the ability to convey the detailed components of how the intervention was delivered to facilitate replication if the results are favorable. This report presents an illustrative example of a physical activity intervention, including the development and the training required to deliver it. This approach has the potential to facilitate reproducibility, evidence synthesis, and implementation in clinical practice
Validity and effectiveness of paediatric early warning systems and track and trigger tools for identifying and reducing clinical deterioration in hospitalised children: A systematic review
Objective: To assess (1) how well validated existing paediatric track and trigger tools (PTTT) are for predicting adverse outcomes in hospitalised children, and (2) how effective broader paediatric early warning systems are at reducing adverse outcomes in hospitalised children.Design: Systematic review.Data sources: British Nursing Index, Cumulative Index of Nursing and Allied Health Literature, Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effectiveness, EMBASE, Health Management Information Centre, Medline, Medline in Process, Scopus and Web of Knowledge searched through May 2018. Eligibility criteria: We included (1) papers reporting on the development or validation of a PTTT or (2) the implementation of a broader early warning system in paediatric units (age 0–18 years), where adverse outcome metrics were reported. Several study designs were considered.Data extraction and synthesis: Data extraction was conducted by two independent reviewers using template forms. Studies were quality assessed using a modified Downs and Black rating scale. Results: 36 validation studies and 30 effectiveness studies were included, with 27 unique PTTT identified. Validation studies were largely retrospective case-control studies or chart reviews, while effectiveness studies were predominantly uncontrolled before-after studies. Metrics of adverse outcomes varied considerably. Some PTTT demonstrated good diagnostic accuracy in retrospective case-control studies (primarily for predicting paediatric intensive care unit transfers), but positive predictive value was consistently low, suggesting potential for alarm fatigue. A small number of effectiveness studies reported significant decreases in mortality, arrests or code calls, but were limited by methodological concerns. Overall, there was limited evidence of paediatric early warning system interventions leading to reductions in deterioration. Conclusion: There are several fundamental methodological limitations in the PTTT literature, and the predominance of single-site studies carried out in specialist centres greatly limits generalisability. With limited evidence of effectiveness, calls to make PTTT mandatory across all paediatric units are not supported by the evidence base
Interventions targeting the mental health and wellbeing of care-experienced children and young people in higher-income countries: Evidence map and systematic review
Background: The mental health and wellbeing of care-experienced children and young people (i.e. foster care, kinship care, residential care) is poorer than non-care-experienced populations. The Care-experienced cHildren and young people’s Interventions to improve Mental health and wEll-being outcomes Systematic review (CHIMES) aimed to synthesise the international evidence base for interventions targeting subjective wellbeing, mental health and suicide amongst care-experienced young people aged ≤ 25 years. Methods: For the first phase of the review, we constructed an evidence map identifying key clusters and gaps in interventions and evaluations. Studies were identified through 16 electronic databases and 22 health and social care websites, in addition to expert recommendations, citation tracking and screening of relevant systematic reviews. We charted interventions and evaluations with a summary narrative, tables and infographics. Results: In total, 64 interventions with 124 associated study reports were eligible. The majority of study reports were from the USA (n = 77). Interventions primarily targeted children and young people’s skills and competencies (n = 9 interventions), the parental functioning and practices of carers (n = 26), or a combination of the two (n = 15). While theoretically under-specified, interventions were largely informed by theories of Attachment, Positive Youth Development, and Social Learning Theory. Current evaluations prioritised outcomes (n = 86) and processes (n = 50), with a paucity of study reports including theoretical descriptions (n = 24) or economic evaluations (n = 1). Interventions most frequently targeted outcomes related to mental, behavioural or neurodevelopmental disorders, notably total social, emotional and behavioural problems (n = 48 interventions) and externalising problem behaviours (n = 26). There were a limited number of interventions targeting subjective wellbeing or suicide-related outcomes. Conclusions: Future intervention development might focus on structural-level intervention theories and components, and target outcomes related to subjective wellbeing and suicide. In accordance with current methodological guidance for intervention development and evaluation, research needs to integrate theoretical, outcome, process and economic evaluation in order to strengthen the evidence base. Systematic review registration: PROSPERO CRD42020177478
Mental health and wellbeing interventions for care-experienced children and young people: Systematic review and synthesis of process evaluations
Background
The mental health and well-being of care-experienced children and young people remains a concern. Despite a range of interventions, the existing evidence base is limited in scope, with a reliance on standalone outcome evaluations which limits understanding of how contextual factors influence implementation and acceptability. The Care-experienced cHildren and young people’s Interventions to improve Mental health and wEll-being outcomes Systematic review (CHIMES) aimed to synthesise evidence of intervention theory, outcome, process and economic effectiveness. This paper reports the process evaluation synthesis, exploring how system factors facilitate and inhibit implementation and acceptability of mental health and wellbeing interventions for care-experienced children and young people.
Methods
Sixteen databases and 22 websites were searched between 2020 and 2022 for studies published from 1990 and May 2022. This was supplemented with contacting experts in the field, citation tracking, screening of relevant systematic reviews and stakeholder consultations. We drew on framework synthesis of qualitative data and incorporated a systems lens, taking account of contextual influences across socio-ecological domains. Quality appraisal assessed reliability and usefulness. Confidence in synthesised findings was assessed with the GRADE-CERQual tool. We report the review in accordance with relevant elements of both the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA), and the Enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) checklist.
Results
Searches retrieved 15,068 unique study reports, and 23 of these were eligible for process evaluation synthesis, reporting on sixteen interventions. Studies were published between 2003 and 2021. Nine interventions were from the UK and Ireland, six interventions were from the USA, and one was from Australia. They were largely classified as interpersonal, where the aim was to modify carer-child relationships. Five key context factors were identified that supported and prohibited intervention delivery: (1) lack of system resources; (2) intervention burden, which encompasses the time, cognitive, and emotional burden associated with implementation and participation; (3) interprofessional relationships between health and social care professionals; (4) care-experienced young people’s identity; and (5) carer identity.
Conclusion
We identified several supportive and restrictive factors across social and health care systems that may impact intervention implementation and acceptability. Key implications include: the importance of involving diverse stakeholders in intervention development and delivery; the need to better resource and support those involved in interventions, particularly training and support for carers; and ensuring future evaluations integrate process evaluations in order to optimise interventions
Randomised controlled trial and economic evaluation of a targeted cancer awareness intervention for adults living in deprived areas of the UK
Background: Cancer outcomes are poor in socioeconomically deprived communities, with low symptom awareness contributing to prolonged help-seeking and advanced disease. Targeted cancer awareness interventions require evaluation.
Methods: Randomised controlled trial involving adults aged 40+ recruited in community and healthcare settings in deprived areas of South Yorkshire and South-East Wales. Intervention: personalised behavioural advice facilitated by a trained lay advisor. Control: usual care. Follow-up at 2-weeks and 6-months post-randomisation. Primary outcome: total cancer symptom recognition score 2-weeks post-randomisation.
Results: 234 participants were randomised. The difference in total symptom recognition at 2-weeks [adjusted mean difference (AMD) 0.6, 95% CI:-0.03, 1.17, p=0.06] was not statistically significant. Intervention participants reported increased symptom recognition (AMD 0.8, 95% CI:0.18, 1.37, p=0.01) and earlier intended presentation (AMD -2.0, 95% CI:-3.02, -0.91, p<0.001) at 6-months. “Lesser known” symptom recognition was higher in the intervention arm (2-weeks AMD 0.5, 95% CI:0.03, 0.97 and 6-months AMD 0.7, 95% CI:0.16, 1.17). Implementation cost per participant was £91.34, with no significant between-groups differences in healthcare resource use post-intervention.
Conclusions: Improved symptom recognition and earlier anticipated presentation occurred at longer-term follow-up. The ABACus Health Check is a viable low-cost intervention to increase cancer awareness in socioeconomically deprived communities.
Clinical Trial Registration: ISRCTN1687254
What Mental Health and Wellbeing Interventions Work for Which Children and Young People in Care? Systematic Review of Potential Outcome Inequities
What mental health and wellbeing interventions work for which children and young people in care? Systematic review of potential outcome inequities
Children and young people with care-experience (e.g. foster, kinship and residential care) report poorer mental health and wellbeing than the general population. Despite an emerging evidence-base for intervention, it is not clear if current approaches create, exacerbate or mitigate outcome inequities between different types of participants. We conducted a systematic review of international interventions targeting mental health, subjective wellbeing and suicide-related outcomes amongst care-experienced children and young people aged up to 25 years old. The review included a narrative synthesis of intervention inequities, exploring if they were more or less effective for different participant groups. Eight interventions, with 14 study reports, presented relevant data. Overall, there was no clear evidence that intervention participation could lead to inequitable impacts, being more or less effective for different groups. However, there was some tentative indication that individuals with lower exposure to maltreatment, fewer care placements, and increased baseline mental health problems, might be more responsive to intervention than other participants. There was limited evidence for wellbeing and no data availability for suicide. Future intervention evaluation should focus on assessing if there is potential to create, sustain or exacerbate inequities, and how approaches may be designed to mitigate this risk