Health Services and Delivery Research最新文献

{"title":"Dental therapists compared with general dental practitioners for undertaking check-ups in low-risk patients: pilot RCT with realist evaluation","authors":"P. Brocklehurst, Z. Hoare, C. Woods, L. Williams, A. Brand, Jing Shen, M. Breckons, J. Ashley, Alison Jenkins, L. Gough, P. Preshaw, C. Burton, K. Shepherd, N. Bhattarai","doi":"10.3310/HSDR09030","DOIUrl":"https://doi.org/10.3310/HSDR09030","url":null,"abstract":"Background \u0000Many dental ‘check-ups’ in the NHS result in no further treatment. The patient is examined by a dentist and returned to the recall list for a further check-up, commonly in 6 or 12 months’ time. As the oral health of regular dental attenders continues to improve, it is likely that an increasing number of these patients will be low risk and will require only a simple check-up in the future, with no further treatment. This care could be delivered by dental therapists. In 2013, the body responsible for regulating the dental profession, the General Dental Council, ruled that dental therapists could see patients directly and undertake check-ups and routine dental treatments (e.g. fillings). Using dental therapists to undertake check-ups on low-risk patients could help free resources to meet the future challenges for NHS dentistry. \u0000 \u0000Objectives \u0000The objectives were to determine the most appropriate design for a definitive study, the most appropriate primary outcome measure and recruitment and retention rates, and the non-inferiority margin. We also undertook a realist-informed process evaluation and rehearsed the health economic data collection tool and analysis. \u0000 \u0000Design \u0000A pilot randomised controlled trial over a 15-month period, with a realist-informed process evaluation. In parallel, we rehearsed the health economic evaluation and explored patients’ preferences to inform a preference elicitation exercise for a definitive study. \u0000 \u0000Setting \u0000The setting was NHS dental practices in North West England. \u0000 \u0000Participants \u0000A total of 217 low-risk patients in eight high-street dental practices participated. \u0000 \u0000Interventions \u0000The current practice of using dentists to provide NHS dental check-ups (treatment as usual; the control arm) was compared with using dental therapists to provide NHS dental check-ups (the intervention arm). \u0000 \u0000Main outcome measure \u0000The main outcome measure was difference in the proportion of sites with bleeding on probing among low-risk patients. We also recorded the number of ‘cross-over’ referrals between dentists and dental therapists. \u0000 \u0000Results \u0000No differences were found in the health status of patients over the 15 months of the pilot trial, suggesting that non-inferiority is the most appropriate design. However, bleeding on probing suffered from ‘floor effects’ among low-risk patients, and recruitment rates were moderately low (39.7%), which suggests that an experimental design might not be the most appropriate. The theory areas that emerged from the realist-informed process evaluation were contractual, regulatory, institutional logistics, patients’ experience and logistics. The economic evaluation was rehearsed and estimates of cost-effectiveness made; potential attributes and levels that can form the basis of preference elicitation work in a definitive study were determined. \u0000 \u0000Limitations \u0000The pilot was conducted over a 15-month period only, and bleeding on probing appeared to have floor effects. The number of part","PeriodicalId":12880,"journal":{"name":"Health Services and Delivery Research","volume":"9 1","pages":"1-118"},"PeriodicalIF":0.0,"publicationDate":"2021-02-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42643946","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Theory and practical guidance for effective de-implementation of practices across health and care services: a realist synthesis","authors":"C. Burton, L. Williams, T. Bucknall, Denise Fisher, Beth Hall, Gill Harris, Peter Jones, Matthew Makin, A. Mcbride, R. Meacock, J. Parkinson, J. Rycroft-Malone, J. Waring","doi":"10.3310/HSDR09020","DOIUrl":"https://doi.org/10.3310/HSDR09020","url":null,"abstract":"Background \u0000Health-care systems across the globe are facing increased pressures to balance the efficient use of resources and at the same time provide high-quality care. There is greater requirement for services to be evidence based, but practices that are of limited clinical effectiveness or cost-effectiveness still occur. \u0000 \u0000Objectives \u0000Our objectives included completing a concept analysis of de-implementation, surfacing decision-making processes associated with de-implementing through stakeholder engagement, and generating an evidence-based realist programme theory of ‘what works’ in de-implementation. \u0000 \u0000Design \u0000A realist synthesis was conducted using an iterative stakeholder-driven four-stage approach. Phase 1 involved scoping the literature and conducting stakeholder interviews to develop the concept analysis and an initial programme theory. In Phase 2, systematic searches of the evidence were conducted to test and develop this theory, expressed in the form of contingent relationships. These are expressed as context–mechanism–outcomes to show how particular contexts or conditions trigger mechanisms to generate outcomes. Phase 3 consisted of validation and refinement of programme theories through stakeholder interviews. The final phase (i.e. Phase 4) formulated actionable recommendations for service leaders. \u0000 \u0000Participants \u0000In total, 31 stakeholders (i.e. user/patient representatives, clinical managers, commissioners) took part in focus groups and telephone interviews. \u0000 \u0000Data sources \u0000Using keywords identified during the scoping work and concept analysis, searches of bibliographic databases were conducted in May 2018. The databases searched were the Cochrane Library, Campbell Collaboration, MEDLINE (via EBSCOhost), the Cumulative Index to Nursing and Allied Health Literature (via EBSCOhost), the National Institute for Health Research Journals Library and the following databases via the ProQuest platform: Applied Social Sciences Index and Abstracts, Social Services Abstracts, International Bibliography of the Social Sciences, Social Sciences Database and Sociological Abstracts. Alerts were set up for the MEDLINE database from May 2018 to December 2018. Online sources were searched for grey literature and snowballing techniques were used to identify clusters of evidence. \u0000 \u0000Results \u0000The concept analysis showed that de-implementation is associated with five main components in context and over time: (1) what is being de-implemented, (2) the issues driving de-implementation, (3) the action characterising de-implementation, (4) the extent that de-implementation is planned or opportunistic and (5) the consequences of de-implementation. Forty-two papers were synthesised to identify six context–mechanism–outcome configurations, which focused on issues ranging from individual behaviours to organisational procedures. Current systems can perpetuate habitual decision-making practices that include low-value treatments. Electronic health records can be d","PeriodicalId":12880,"journal":{"name":"Health Services and Delivery Research","volume":"9 1","pages":"1-102"},"PeriodicalIF":0.0,"publicationDate":"2021-02-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41344654","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Non-pharmacological interventions to reduce restrictive practices in adult mental health inpatient settings: the COMPARE systematic mapping review","authors":"J. Baker, Kathryn Berzins, K. Canvin, Iris Benson, I. Kellar, Judy M. Wright, R. R. Lopez, J. Duxbury, T. Kendall, D. Stewart","doi":"10.3310/HSDR09050","DOIUrl":"https://doi.org/10.3310/HSDR09050","url":null,"abstract":"The study aimed to provide a mapping review of non-pharmacological interventions to reduce restrictive practices in adult mental health inpatient settings; classify intervention components using the behaviour change technique taxonomy; explore evidence of behaviour change techniques and interventions; and identify the behaviour change techniques that show most effectiveness and those that require further testing.Incidents involving violence and aggression occur frequently in adult mental health inpatient settings. They often result in restrictive practices such as restraint and seclusion. These practices carry significant risks, including physical and psychological harm to service users and staff, and costs to the NHS. A number of interventions aim to reduce the use of restrictive practices by using behaviour change techniques to modify practice. Some interventions have been evaluated, but effectiveness research is hampered by limited attention to the specific components. The behaviour change technique taxonomy provides a common language with which to specify intervention content.Systematic mapping study and analysis.English-language health and social care research databases, and grey literature, including social media. The databases searched included British Nursing Index (BNI), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Cochrane Central Register of Controlled Trials (CCRCT), Cochrane Database of Systematic Reviews (CDSR), Database of Abstracts of Reviews of Effects (DARE), EMBASE, Health Technology Assessment (HTA) Database, HTA Canadian and International, Ovid MEDLINE®, NHS Economic Evaluation Database (NHS EED), PsycInfo®and PubMed. Databases were searched from 1999 to 2019.Broad literature search; identification, description and classification of interventions using the behaviour change technique taxonomy; and quality appraisal of reports. Records of interventions to reduce any form of restrictive practice used with adults in mental health services were retrieved and subject to scrutiny of content, to identify interventions; quality appraisal, using the Mixed Methods Appraisal Tool; and data extraction, regarding whether participants were staff or service users, number of participants, study setting, intervention type, procedures and fidelity. The resulting data set for extraction was guided by the Workgroup for Intervention Development and Evaluation Research, Cochrane and theory coding scheme recommendations. The behaviour change technique taxonomy was applied systematically to each identified intervention. Intervention data were examined for overarching patterns, range and frequency. Overall percentages of behaviour change techniques by behaviour change technique cluster were reported. Procedures used within interventions, for example staff training, were described using the behaviour change technique taxonomy.The final data set comprised 221 records reporting 150 interventions, 109 of which had been evaluated. The","PeriodicalId":12880,"journal":{"name":"Health Services and Delivery Research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47802530","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Developing an evidence-based online method of linking behaviour change techniques and theoretical mechanisms of action: a multiple methods study","authors":"S. Michie, M. Johnston, Alexander J. Rothman, M. de Bruin, M. Kelly, R. Carey, L. Bohlen, H. Groarke, Niall Anderson, Silje Zink","doi":"10.3310/HSDR09010","DOIUrl":"https://doi.org/10.3310/HSDR09010","url":null,"abstract":"Background Many global health challenges may be targeted by changing people’s behaviour. Behaviours including cigarette smoking, physical inactivity and alcohol misuse, as well as certain dietary behaviours, contribute to deaths and disability by increasing the risk of cancers, cardiovascular diseases and diabetes. Interventions have been designed to change these health behaviours with a view to reducing these health risks. However, the effectiveness of these interventions has been quite variable and further information is needed to enhance their success. More information is needed about the specific processes that underlie the effectiveness of intervention strategies. Aim Researchers have developed a taxonomy of 93 behaviour change techniques (i.e. the active components of an intervention that bring about behavioural change), but little is known regarding their potential mechanisms of action (i.e. the processes through which a behaviour change technique affects behaviour). We therefore aimed to examine links between behaviour change techniques and mechanisms of action. Method First, we conducted a literature synthesis study of 277 behaviour change intervention studies, from which we extracted information on links, described by authors, between behaviour change techniques and mechanisms of action, and identified an average of 10 links per intervention report. Second, behaviour change experts (n = 105) were engaged in a three-round consensus study in which they discussed and rated their confidence in the presence/absence of ‘links’ and ‘non-links’ between commonly used behaviour change techniques (n = 61) and a set of mechanisms of action (n = 26). Ninety links and 460 ‘non-links’ reached the pre-set threshold of 80% agreement. To enhance the validity of these results, a third study was conducted that triangulated the findings of the first two studies. Discrepancies and uncertainties between the studies were included in a reconciliation consensus study with a new group of experts (n = 25). The final results identified 92 definite behaviour change technique–mechanism of action links and 465 definite non-links. In a fourth study, we examined whether or not groups of behaviour change techniques used together frequently across interventions revealed shared theoretical underpinnings. We found that experts agreed on the underlying theory for three groups of behaviour change techniques. Results Our results are potentially useful to policy-makers and practitioners in selecting behaviour change techniques to include in behaviour change interventions. However, our data do not demonstrate that the behaviour change techniques are effective in targeting the mechanism of action; rather, the links identified may be the ‘best bets’ for interventions that are effective in changing mechanisms of action, and the non-links are unlikely to be effective. Researchers examining effectiveness of interventions in either primary studies or evidence syntheses may consider th","PeriodicalId":12880,"journal":{"name":"Health Services and Delivery Research","volume":"9 1","pages":"1-168"},"PeriodicalIF":0.0,"publicationDate":"2021-01-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42224374","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Variations in the organisation of and outcomes from Early Pregnancy Assessment Units: the VESPA mixed-methods study","authors":"M. Memtsa, V. Goodhart, G. Ambler, P. Brocklehurst, E. Keeney, Sergio A. Silverio, Zacharias Anastasiou, J. Round, Nazim Khan, J. Hall, G. Barrett, R. Bender-Atik, J. Stephenson, D. Jurković","doi":"10.3310/hsdr08460","DOIUrl":"https://doi.org/10.3310/hsdr08460","url":null,"abstract":"Variations in the organisation of and outcomes from Early Pregnancy Assessment Units: the VESPA mixed-methods study Maria Memtsa ,1 Venetia Goodhart ,1 Gareth Ambler ,2 Peter Brocklehurst ,3 Edna Keeney ,4 Sergio Silverio ,1,5 Zacharias Anastasiou ,2 Jeff Round ,6 Nazim Khan ,7 Jennifer Hall ,1 Geraldine Barrett ,1 Ruth Bender-Atik ,8 Judith Stephenson 1 and Davor Jurkovic 1* 1Elizabeth Garrett Anderson Institute for Women’s Health, University College London, London, UK 2Department of Statistical Science, University College London, London, UK 3Birmingham Clinical Trials Unit, Institute of Applied Health Research, University of Birmingham, Birmingham, UK 4Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK 5Department of Women and Children’s Health, King’s College London, St Thomas’ Hospital, London, UK 6Institute of Health Economics, School of Social and Community Medicine, University of Bristol, Bristol, UK 7Modelling and Analytical Systems Solutions Ltd, Edinburgh, UK 8The Miscarriage Association, Wakefield, UK *Corresponding author davor.jurkovic@nhs.net Background: Early pregnancy complications are common and account for the largest proportion of emergency work in gynaecology. Although early pregnancy assessment units operate in most UK acute hospitals, recent National Institute of Health and Care Excellence guidance emphasised the need for more research to identify configurations that provide the optimal balance between cost-effectiveness, clinical effectiveness and serviceand patient-centred outcomes [National Institute for Health and Care Excellence (NICE). Ectopic Pregnancy and Miscarriage: Diagnosis and Initial Management. URL: http://guidance.nice.org.uk/CG154 (accessed 23 March 2016)]. Objectives: The primary aim was to test the hypothesis that the rate of hospital admissions for early pregnancy complications is lower in early pregnancy assessment units with high consultant presence than in units with low consultant presence. The key secondary objectives were to assess the effect of increased consultant presence on other clinical outcomes, to explore patient satisfaction with the quality of care and to make evidence-based recommendations about the future configuration of UK early pregnancy assessment units. Design: The Variations in the organisations of Early Pregnancy Assessment Units in the UK and their effects on clinical, Service and PAtient-centred outcomes (VESPA) study employed a multimethods approach and included a prospective cohort study of women attending early pregnancy assessment units to measure clinical outcomes, an economic evaluation, a patient satisfaction survey, qualitative interviews with service users, an early pregnancy assessment unit staff survey and a hospital emergency care audit. DOI: 10.3310/hsdr08460 Health Services and Delivery Research 2020 Vol. 8 No. 46 © Queen’s Printer and Controller of HMSO 2020. This work was produced by Memtsa et al. under the terms of a commissio","PeriodicalId":12880,"journal":{"name":"Health Services and Delivery Research","volume":" ","pages":"1-138"},"PeriodicalIF":0.0,"publicationDate":"2020-12-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48983005","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Pelvic floor muscle training for women with pelvic organ prolapse: the PROPEL realist evaluation","authors":"M. Maxwell, Karen Berry, S. Wane, S. Hagen, D. McClurg, E. Duncan, P. Abhyankar, A. Elders, C. Best, J. Wilkinson, H. Mason, Linda Fenocchi, Eileen Calveley, K. Guerrero, D. Tincello","doi":"10.3310/hsdr08470","DOIUrl":"https://doi.org/10.3310/hsdr08470","url":null,"abstract":"1Nursing, Midwifery and Allied Health Professions Research Unit, University of Stirling, Stirling, UK 2Department of Sport, Exercise and Rehabilitation, University of Northumbria, Newcastle upon Tyne, UK 3Nursing, Midwifery and Allied Health Professions Research Unit, Glasgow Caledonian University, Glasgow, UK 4Division of Health Sciences, Faculty of Health Sciences and Sport, University of Stirling, Stirling, UK 5Yunus Centre for Social Business and Health, Glasgow Caledonian University, Glasgow, UK 6Department of Urogynaecology, Queen Elizabeth University Hospital, NHS Greater Glasgow and Clyde, Glasgow, UK 7Department of Health Sciences, Centre for Medicine, University of Leicester, Leicester, UK","PeriodicalId":12880,"journal":{"name":"Health Services and Delivery Research","volume":"8 1","pages":"1-104"},"PeriodicalIF":0.0,"publicationDate":"2020-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42725581","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Evaluating specialist autism teams’ provision of care and support for autistic adults without learning disabilities: the SHAPE mixed-methods study","authors":"B. Beresford, S. Mukherjee, Emese Mayhew, Emily Heavey, A. Park, L. Stuttard, V. Allgar, M. Knapp","doi":"10.3310/hsdr08480","DOIUrl":"https://doi.org/10.3310/hsdr08480","url":null,"abstract":"Evaluating specialist autism teams’ provision of care and support for autistic adults without learning disabilities: the SHAPE mixed-methods study Bryony Beresford ,1* Suzanne Mukherjee ,1 Emese Mayhew ,1 Emily Heavey ,2 A-La Park ,3 Lucy Stuttard ,1 Victoria Allgar 4 and Martin Knapp 3 1Social Policy Research Unit, University of York, York, UK 2School of Human and Health Sciences, University of Huddersfield, Huddersfield, UK 3Care Policy and Evaluation Centre, Department of Health Policy, London School of Economics and Political Science, London, UK 4Department of Health Sciences, University of York, York, UK *Corresponding author bryony.beresford@york.ac.uk Background: The National Institute for Health and Care Excellence recommends that every locality has a ‘Specialist Autism Team’: an specialist autism, community-based, multidisciplinary service that is responsible for developing, co-ordinating and delivering care and support. The National Institute for Health and Care Excellence recommended that this novel delivery model was evaluated. Objectives: The objectives were to identify services fulfilling the National Institute for Health and Care Excellence’s description of a Specialist Autism Team; to describe practitioner and user experiences; to investigate outcomes; to identify factors associated with these outcomes; and to estimate costs and investigate cost-effectiveness of these services. Design: During stage 1, desk-based research and a survey to identify Specialist Autism Teams were carried out. Stage 2 comprised a mixed-methods observational study of a cohort of Specialist Autism Team users, which was followed for up to 2 years from the assessment appointment. The cohort comprised users of a Specialist Autism Team not previously diagnosed with autism (the ‘Diagnosis and Support’ group) and those already diagnosed (the ‘Support-Only’ group). Stage 2 also involved a nested qualitative study of senior practitioners and an exploratory comparison of the Diagnosis and Support group with a cohort who accessed a service which only provided autism diagnostic assessments (‘Diagnosis-Only’ cohort). Setting: The setting in stage 2 was nine Specialist Autism Teams; three also provided a regional diagnostic assessment service (used to recruit the Diagnosis-Only cohort). Participants: There were 252 participants in the Specialist Autism Team cohort (Diagnosis and Support, n = 164; Support Only, n = 88) and 56 participants in the Diagnosis-Only cohort. Thirty-eight participants (across both cohorts) were recruited to the qualitative evaluation and 11 practitioners to the nested qualitative study. Main outcome measures: The World Health Organization Quality of Life assessment, abbreviated version (psychological domain) and the General Health Questionnaire (12-item version). Data sources: Self-reported outcomes, qualitative interviews with users and focus groups with practitioners. DOI: 10.3310/hsdr08480 Health Services and Delivery Research 2020 Vol. 8 No","PeriodicalId":12880,"journal":{"name":"Health Services and Delivery Research","volume":"8 1","pages":"1-200"},"PeriodicalIF":0.0,"publicationDate":"2020-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43334992","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The decision-making process in recommending electronic communication aids for children and young people who are non-speaking: the I-ASC mixed-methods study","authors":"Janice Murray, Yvonne Lynch, J. Goldbart, Liz Moulam, Simon Judge, Edward J. D. Webb, Mark Jayes, Stuart Meredith, H. Whittle, Nicola Randall, D. Meads, S. Hess","doi":"10.3310/hsdr08450","DOIUrl":"https://doi.org/10.3310/hsdr08450","url":null,"abstract":"The decision-making process in recommending electronic communication aids for children and young people who are non-speaking: the I-ASC mixed-methods study Janice Murray ,1* Yvonne Lynch ,1 Juliet Goldbart ,1 Liz Moulam ,1 Simon Judge ,2 Edward Webb ,3 Mark Jayes,1 Stuart Meredith,1 Helen Whittle ,1 Nicola Randall ,2 David Meads 3 and Stephane Hess 4 1Department of Health Professions, Manchester Metropolitan University, Manchester, UK 2Barnsley Assistive Technology Service, Barnsley Hospital NHS Foundation Trust, Barnsley, UK 3Leeds Institute of Health Sciences and Choice Modelling Centre, University of Leeds, Leeds, UK 4Choice Modelling Centre and Institute of Transport Studies, University of Leeds, Leeds, UK *Corresponding author J.murray@mmu.ac.uk Background: This project [Identifying Appropriate Symbol Communication (I-ASC)] explored UK decision-making practices related to communication aid recommendations for children and young people who are non-speaking. Research evidence related to communication aid decision-making is limited. The research aims were to increase understanding of influencers on the decision-making process in recommending electronic communication aids, and to develop guidance tools to support decision-making. An additional, post hoc aim was to evaluate the public involvement contribution to the I-ASC project. The research focused on the identification of attributes and characteristics that professionals, family members and those who use communication aids considered important in the recommendation process. Findings informed the development of guidance resources. The evaluation of public involvement focused on what could be learned from a nationally funded project with involvement from public contributors typically regarded as hard to include. Methodology: For the clinical decision-making component, the methodological investigation adopted a three-tier approach with three systematic reviews, a qualitative exploration of stakeholder perspectives through focus groups and interviews, and a quantitative investigation surveying professionals’ perspectives. The public involvement evaluation adopted a mixed-methods approach. A total of 354 participants contributed to the decision-making data set, including professionals, family members, and children, young people and adults who use communication aids; 22 participants contributed to the public involvement evaluation. The literature review process followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Thematic analysis and framework approach supported the analysis of qualitative data. Two stated preference surveys, a best–worst scaling and a discrete choice experiment, allowed the relative importance of factors in decision-making to be determined. Analysis was grounded in random utility theory. Public involvement: Two public involvement co-researchers, an adult using a symbol communication aid and a parent of a communication aid user, were","PeriodicalId":12880,"journal":{"name":"Health Services and Delivery Research","volume":"8 1","pages":"1-158"},"PeriodicalIF":0.0,"publicationDate":"2020-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47301938","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding the health-care experiences of people with sickle cell disorder transitioning from paediatric to adult services: This Sickle Cell Life, a longitudinal qualitative study","authors":"A. Renedo, Sam Miles, S. Chakravorty, A. Leigh, J. Warner, C. Marston","doi":"10.3310/hsdr08440","DOIUrl":"https://doi.org/10.3310/hsdr08440","url":null,"abstract":"Understanding the health-care experiences of people with sickle cell disorder transitioning from paediatric to adult services: This Sickle Cell Life, a longitudinal qualitative study Alicia Renedo ,1 Sam Miles ,1 Subarna Chakravorty ,2 Andrea Leigh ,3 John O Warner 4,5 and Cicely Marston 1* 1Department of Public Health, Environments and Society, Faculty of Public Health and Policy, London School of Hygiene & Tropical Medicine, London, UK 2Department of Paediatric Haematology, King’s College Hospital, London, UK 3University College London NHS Hospitals Foundation Trust, London, UK 4National Heart and Lung Institute, Imperial College London, London, UK 5Collaboration for Leadership in Applied Health Research and Care for Northwest London, Imperial College London, London, UK *Corresponding author Cicely.Marston@lshtm.ac.uk Background: Transitions from paediatric to adult health-care services cause problems worldwide, particularly for young people with long-term conditions. Sickle cell disorder brings particular challenges needing urgent action. Objectives: Understand health-care transitions of young people with sickle cell disorder and how these interact with broader transitions to adulthood to improve services and support. Methods: We used a longitudinal design in two English cities. Data collection included 80 qualitative interviews with young people (aged 13–21 years) with sickle cell disorder. We conducted 27 one-off interviews and 53 repeat interviews (i.e. interviews conducted two or three times over 18 months) with 48 participants (30 females and 18 males). We additionally interviewed 10 sickle cell disease specialist health-care providers. We used an inductive approach to analysis and co-produced the study with patients and carers. Results: Key challenges relate to young people’s voices being ignored. Participants reported that their knowledge of sickle cell disorder and their own needs are disregarded in hospital settings, in school and by peers. Outside specialist services, health-care staff refuse to recognise patient expertise, reducing patients’ say in decisions about their own care, particularly during unplanned care in accident and emergency departments and on general hospital wards. Participants told us that in transitioning to adult care they came to realise that sickle cell disorder is poorly understood by non-specialist healthcare providers. As a result, participants said that they lack trust in staff’s ability to treat them correctly and that they try to avoid hospital. Participants reported that they try to manage painful episodes at home, knowing that this is risky. Participants described engaging in social silencing (i.e. reluctance to talk about and disclose their condition for fear that others will not listen or will not understand) outside hospital; for instance, they would avoid mentioning cell sickle disorder to explain fatigue. Their self-management tactics include internalising their illness experiences, for instance by","PeriodicalId":12880,"journal":{"name":"Health Services and Delivery Research","volume":"8 1","pages":"1-94"},"PeriodicalIF":0.0,"publicationDate":"2020-11-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46319570","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding and improving experiences of care in hospital for people living with dementia, their carers and staff: three systematic reviews","authors":"Ruth Gwernan-Jones, I. Lourida, R. Abbott, Morwenna Rogers, Colin Green, S. Ball, A. Hemsley, Debbie Cheeseman, L. Clare, D. Moore, J. Burton, Sue Lawrence, Martyn Rogers, Chrissy Hussey, G. Coxon, D. Llewellyn, T. Naldrett, J. Thompson Coon","doi":"10.3310/hsdr08430","DOIUrl":"https://doi.org/10.3310/hsdr08430","url":null,"abstract":"Understanding and improving experiences of care in hospital for people living with dementia, their carers and staff: three systematic reviews Ruth Gwernan-Jones ,1 Ilianna Lourida ,1 Rebecca A Abbott ,1 Morwenna Rogers ,1 Colin Green ,2 Susan Ball ,3 Anthony Hemsley ,4 Debbie Cheeseman ,4 Linda Clare ,5 Darren Moore ,6 Julia Burton,7 Sue Lawrence,7 Martyn Rogers,8 Chrissy Hussey,9 George Coxon,10 David J Llewellyn ,11,12 Tina Naldrett9 and Jo Thompson Coon 1* 1Evidence Synthesis Team, PenCLAHRC, University of Exeter Medical School, College of Medicine and Health, University of Exeter, Exeter, UK 2Health Economics Group, University of Exeter Medical School, College of Medicine and Health, University of Exeter, Exeter, UK 3Health Statistics Group, PenCLAHRC, University of Exeter Medical School, College of Medicine and Health, University of Exeter, Exeter, UK 4Royal Devon and Exeter NHS Foundation Trust, Exeter, UK 5Centre for Research in Ageing and Cognitive Health, University of Exeter Medical School, College of Medicine and Health, University of Exeter, Exeter, UK 6Graduate School of Education, College of Social Sciences and International Studies, University of Exeter, Exeter, UK 7Alzheimer’s Society Research Network Volunteers, c/o University of Exeter Medical School, College of Medicine and Health, University of Exeter, Exeter, UK 8Age UK Exeter, Exeter, UK 9Hospiscare, Exeter, UK 10Devon Care Kitemark, Exeter, UK 11Mental Health Research Group, University of Exeter Medical School, College of Medicine and Health, University of Exeter, Exeter, UK 12The Alan Turing Institute, London, UK *Corresponding author J.Thompson-Coon@exeter.ac.uk Background: Being in hospital can be particularly confusing and challenging not only for people living with dementia, but also for their carers and the staff who care for them. Improving the experience of care for people living with dementia in hospital has been recognised as a priority. Objectives: To understand the experience of care in hospital for people living with dementia, their carers and the staff who care for them and to assess what we know about improving the experience of care. Review methods: We undertook three systematic reviews: (1) the experience of care in hospital, (2) the experience of interventions to improve care in hospital and (3) the effectiveness and costeffectiveness of interventions to improve the experience of care. Reviews 1 and 2 sought primary qualitative studies and were analysed using meta-ethnography. Review 3 sought comparative studies and economic evaluations of interventions to improve experience of care. An interweaving approach to overarching synthesis was used to integrate the findings across the reviews. DOI: 10.3310/hsdr08430 Health Services and Delivery Research 2020 Vol. 8 No. 43 © Queen’s Printer and Controller of HMSO 2020. This work was produced by Gwernan-Jones et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social C","PeriodicalId":12880,"journal":{"name":"Health Services and Delivery Research","volume":"8 1","pages":"1-248"},"PeriodicalIF":0.0,"publicationDate":"2020-11-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"69495376","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}