Implementing post-diagnostic support for people living with dementia in England: a qualitative study of barriers and strategies used to address these in practice.
Ontology highlight
ABSTRACT: Background
inequalities and gaps in post-diagnostic support (PDS) for people with dementia persist despite a policy focus on dementia in England and Wales. Understanding and overcoming the factors contributing to these inequalities is vital to improve care for people living with dementia (PLWD) and their families.Objective
to explore common barriers to the delivery of PDS in England and Wales and describe successful strategies to address them, drawing on examples from current practice.Design
qualitative semi-structured interviews, focus groups and observation.Settings
Phase 1: interviewees were drawn from multiple sectors across England and Wales, including NHS clinical commissioning groups and social care. Phase 2: six case study sites based in different sectors (primary care, secondary mental health and third sector) in England.Participants
Phase 1: 61 professionals, including commissioners and service managers. Phase 2: 68 professionals, including frontline staff and those working in related services; 17 PLWD; 31 carers.Results
barriers to implementing PDS in dementia were an unsupportive infrastructure, limited proactive review and limited capacity and capability particularly in primary care. Strategies used successfully in practice to address these challenges included creating opportunities for service development, improving joint working, supporting non-specialists and developing ongoing, holistic review and care planning.Conclusion
a range of practical strategies have been identified to address many of the common barriers to PDS in dementia. To achieve policy goals of a task-shifted and task-shared approach to PDS, widespread use of these strategies is recommended.
SUBMITTER: Wheatley A
PROVIDER: S-EPMC8675435 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:BackgroundInternet-based dementia caregiver interventions have been shown to be effective for a range of caregiver outcomes; however, little is known about how to best implement them. We developed iGeriCare, an evidence-based, multimedia, web-based educational resource for family caregivers of people living with dementia.ObjectiveThis study aims to obtain feedback and opinions from experts and clinicians involved in dementia care and caregiver education about 1 iGeriCare and 2 barriers and facilitators to implementing a web-based caregiver program.MethodsWe carried out semistructured interviews with individuals who had a role in dementia care and/or caregiver education in several key stakeholder settings in Southern Ontario, Canada. We queried participants' perceptions of iGeriCare, caregiver education, the implementation process, and their experience with facilitators and barriers. Transcripts were coded and analyzed using a grounded theory approach. The themes that emerged were organized using the Consolidated Framework for Implementation Research.ResultsA total of 12 participants from a range of disciplines described their perceptions of iGeriCare and identified barriers and facilitators to the implementation of the intervention. The intervention was generally perceived as a high-quality resource for caregiver education and support, with many stakeholders highlighting the relative advantage of a web-based format. The intervention was seen to meet dementia caregiver needs, partially because of its flexibility, accessibility, and compatibility within existing clinical workflows. In addition, the intervention helps to overcome time constraints for both caregivers and clinicians.ConclusionsStudy findings indicate a generally positive response to the use of internet-based interventions for dementia caregiver education. Results suggest that iGeriCare may be a useful clinical resource to complement traditional face-to-face and print material-based caregiver education. More comprehensive studies are required to identify the effectiveness and longevity of web-based caregiver education interventions and to better understand barriers and facilitators with regard to the implementation of technology-enhanced caregiver educational interventions in various health care settings.
| S-EPMC7568210 | biostudies-literature
Project description:BACKGROUND:In the United States, primary care providers (PCPs) routinely balance acute, chronic, and preventive patient care delivery, including cancer prevention and screening, in time-limited visits. Clinical decision support (CDS) may help PCPs prioritize cancer prevention and screening with other patient needs. In a three-arm, pragmatic, clinic-randomized control trial, we are studying cancer prevention CDS in a large, upper Midwestern healthcare system. The web-based, electronic health record (EHR)-linked CDS integrates evidence-based primary and secondary cancer prevention and screening recommendations into an existing cardiovascular risk management CDS system. Our objective with this study was to identify adoption barriers and facilitators before implementation in primary care. METHODS:We conducted semi-structured interviews guided by the Consolidated Framework for Implementation Research (CFIR) with 28 key informants employed by the healthcare organization in either leadership roles or the direct provision of clinical care. Transcribed interviews were analyzed using qualitative content analysis. RESULTS:EHR, CDS workflow, CDS users (providers and patients), training, and organizational barriers and facilitators were identified related to Intervention Characteristics, Outer Setting, Inner Setting, and Characteristics of Individuals CFIR domains. CONCLUSION:Identifying and addressing key informant-identified barriers and facilitators before implementing cancer prevention CDS in primary care may support a successful implementation and sustained use. The CFIR is a useful framework for understanding pre-implementation barriers and facilitators. Based on our findings, the research team developed and instituted specialized training, pilot testing, implementation plans, and post-implementation efforts to maximize identified facilitators and address barriers. TRIAL REGISTRATION:clinicaltrials.gov , NCT02986230 , December 6, 2016.
| S-EPMC6668099 | biostudies-literature
Project description:BackgroundDespite the increasing availability of clinical decision support systems (CDSSs) and rising expectation for CDSSs based on artificial intelligence (AI), little is known about the acceptance of AI-based CDSS by physicians and its barriers and facilitators in emergency care settings.ObjectiveWe aimed to evaluate the acceptance, barriers, and facilitators to implementing AI-based CDSSs in the emergency care setting through the opinions of physicians on our newly developed, real-time AI-based CDSS, which alerts ED physicians by predicting aortic dissection based on numeric and text information from medical charts, by using the Unified Theory of Acceptance and Use of Technology (UTAUT; for quantitative evaluation) and the Consolidated Framework for Implementation Research (CFIR; for qualitative evaluation) frameworks.MethodsThis mixed methods study was performed from March to April 2021. Transitional year residents (n=6), emergency medicine residents (n=5), and emergency physicians (n=3) from two community, tertiary care hospitals in Japan were included. We first developed a real-time CDSS for predicting aortic dissection based on numeric and text information from medical charts (eg, chief complaints, medical history, vital signs) with natural language processing. This system was deployed on the internet, and the participants used the system with clinical vignettes of model cases. Participants were then involved in a mixed methods evaluation consisting of a UTAUT-based questionnaire with a 5-point Likert scale (quantitative) and a CFIR-based semistructured interview (qualitative). Cronbach α was calculated as a reliability estimate for UTAUT subconstructs. Interviews were sampled, transcribed, and analyzed using the MaxQDA software. The framework analysis approach was used during the study to determine the relevance of the CFIR constructs.ResultsAll 14 participants completed the questionnaires and interviews. Quantitative analysis revealed generally positive responses for user acceptance with all scores above the neutral score of 3.0. In addition, the mixed methods analysis identified two significant barriers (System Performance, Compatibility) and two major facilitators (Evidence Strength, Design Quality) for implementation of AI-based CDSSs in emergency care settings.ConclusionsOur mixed methods evaluation based on theoretically grounded frameworks revealed the acceptance, barriers, and facilitators of implementation of AI-based CDSS. Although the concern of system failure and overtrusting of the system could be barriers to implementation, the locality of the system and designing an intuitive user interface could likely facilitate the use of optimal AI-based CDSS. Alleviating and resolving these factors should be key to achieving good user acceptance of AI-based CDSS.
| S-EPMC9237770 | biostudies-literature
Project description:OBJECTIVES:To establish the feasibility of the Digital Support Platform (DSP), an internet-based, postdiagnostic tool designed for families living with a diagnosis of dementia. DESIGN:Qualitative methods using normalisation process theory as an analysis framework for semistructured interview transcriptions. SETTING:A community care setting in the South-East Scotland. PARTICIPANTS:We interviewed 10 dyads of people with Alzheimer's, vascular or mixed dementia (PWD), and their family carers, who had been given and had used the DSP for at least 2?months. RESULTS:Our analysis revealed that the DSP was predominantly understood and used by the carers rather than PWD, and was used alongside tools and methods they already used to care for their relative. The DSP was interpreted as a tool that may be of benefit to those experiencing later stages of dementia or with physical care needs. Carers stated that the DSP may be of benefit in the future, reflecting a disinclination to prepare for or anticipate for future needs, rather than focus on those needs present at the time of distribution. PWD spoke positively about an interest in learning to use technology more effectively and enjoyed having their own tablet devices. CONCLUSIONS:The DSP was not wholly appropriate for families living with dementia in its early stages. The views of carers confirmed that postdiagnostic support was valued, but emphasised the importance of tailoring this support to the exact needs and current arrangements of families. There may be a benefit to introducing, encouraging, providing and teaching internet-enabled technology to those PWD who do not currently have access. Training should be provided when introducing new technology to PWD.
| S-EPMC5898353 | biostudies-other
Project description:BackgroundClinical decision support (CDS) is increasingly used to facilitate chronic disease care. Despite increased availability of electronic health records and the ongoing development of new CDS technologies, uptake of CDS into routine clinical settings is inconsistent. This qualitative systematic review seeks to synthesise healthcare provider experiences of CDS-exploring the barriers and enablers to implementing, using, evaluating, and sustaining chronic disease CDS systems.MethodsA search was conducted in Medline, CINAHL, APA PsychInfo, EconLit, and Web of Science from 2011 to 2021. Primary research studies incorporating qualitative findings were included if they targeted healthcare providers and studied a relevant chronic disease CDS intervention. Relevant CDS interventions were electronic health record-based and addressed one or more of the following chronic diseases: cardiovascular disease, diabetes, chronic kidney disease, hypertension, and hypercholesterolaemia. Qualitative findings were synthesised using a meta-aggregative approach.ResultsThirty-three primary research articles were included in this qualitative systematic review. Meta-aggregation of qualitative data revealed 177 findings and 29 categories, which were aggregated into 8 synthesised findings. The synthesised findings related to clinical context, user, external context, and technical factors affecting CDS uptake. Key barriers to uptake included CDS systems that were simplistic, had limited clinical applicability in multimorbidity, and integrated poorly into existing workflows. Enablers to successful CDS interventions included perceived usefulness in providing relevant clinical knowledge and structured chronic disease care; user confidence gained through training and post training follow-up; external contexts comprised of strong clinical champions, allocated personnel, and technical support; and CDS technical features that are both highly functional, and attractive.ConclusionThis systematic review explored healthcare provider experiences, focussing on barriers and enablers to CDS use for chronic diseases. The results provide an evidence-base for designing, implementing, and sustaining future CDS systems. Based on the findings from this review, we highlight actionable steps for practice and future research.Trial registrationPROSPERO CRD42020203716.
| S-EPMC9330991 | biostudies-literature
Project description:IntroductionPeer support offers informational, appraisal and emotional support for people with kidney disease, is recommended in national policy, yet has low engagement levels. This paper reports results of a national survey and qualitative interviews in the UK with the aim of increasing understanding of peer support availability and its barriers and facilitators.Literature reviewA recent narrative review highlighted the barriers and facilitators to peer support uptake among people with kidney disease however called on further studies to be conducted.Material and methodsThe survey, adapted from a 2012 version, was sent to all 83 UK kidney units. Semistructured interviews were conducted with staff, recipients and supporters from two units.ResultsForty-four units completed the survey, and 10 staff, 7 patients and 2 peer supporters were interviewed. The most common facilitators were promotion with staff and having peer support champions. Barriers included lack of staff time, guidance/information, other projects taking priority and too few supporters.DiscussionLittle progress has been made since 2012; a proportion of units without peer support remains significant, with similar barriers identified in 2020. Services could be designed to limit the time needed for their creation and maintenance through having simpler referrals and designating staff liaisons.Implications for clinical practicePeer support programmes should have passionate staff and volunteers, involve recipients in the design, recruit an array of supporters and establish evaluations to determine the progress/outcomes. A resource toolkit was developed in response to this project.ConclusionFindings from the national survey and qualitative interviews showed that more peer support optimisation and prioritisation is needed to ensure benefits are maximised.
| S-EPMC9292676 | biostudies-literature
Project description:The Outline for Cultural Formulation (OCF) in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) marked an attempt to apply anthropological concepts within psychiatry. The OCF has been criticized for not providing guidelines to clinicians. The DSM-5 Cultural Issues Subgroup has since converted the OCF into the Cultural Formulation Interview (CFI) for use by any clinician with any patient in any clinical setting. This paper presents perceived barriers to CFI implementation in clinical practice reported by patients (n = 32) and clinicians (n = 7) at the New York site within the DSM-5 international field trial. We used an implementation fidelity paradigm to code debriefing interviews after each CFI session through deductive content analysis. The most frequent patient threats were lack of differentiation from other treatments, lack of buy-in, ambiguity of design, over-standardization of the CFI, and severity of illness. The most frequent clinician threats were lack of conceptual relevance between intervention and problem, drift from the format, repetition, severity of patient illness, and lack of clinician buy-in. The Subgroup has revised the CFI based on these barriers for final publication in DSM-5. Our findings expand knowledge on the cultural formulation by reporting the CFI's reception among patients and clinicians.
| S-EPMC4299818 | biostudies-literature
Project description:Background and Objectives:Dementia is accompanied by increasing need for support in activities of daily living (ADLs). This brief report/literature review summarizes the practices to care for early stage, middle stage, and late stage ADL needs (dressing, toileting, and eating/nutrition), and examines commonalities across ADL needs and the extent to which practices are reflected in guidelines and/or evidence. Research Design and Methods:A review of the grey and peer-reviewed literature, using some but not all procedures of a systematic review. Key terms were identified for ADLs overall and for each of the 3 ADLs, and a search was conducted using these words in combination with (a) dementia, Alzheimer's disease, and similar terms, and (b) practices, interventions, guidelines, recommendations, and similar terms. Searches were conducted using databases of peer-reviewed literature as well as the Grey Literature Reports and Google search engine. Sources were included if they provided evidence or recommendations on interventions to address ADL functioning for dressing, toileting, and feeding for persons living with dementia. Results:As cognitive and functional impairment increases, the number of care practices and themes that embody care practices increases. The majority of practices are evidence-based, and most evidence is incorporated into guidelines. Discussion and Implications:Virtually all practices reflect person-centered care principles. Five recommendations summarize the evidence and recommendations related to providing support to persons living with dementia in relation to dressing, toileting, and eating/nutrition.
| S-EPMC5881654 | biostudies-literature
Project description:BackgroundThe Conversation, Understand, Replace, Experts and evidence-based treatment (CURE) project aims to provide a comprehensive offer of both pharmacotherapy and specialist support for tobacco dependence to all smokers admitted to hospital and after discharge. CURE was recently piloted within a single trust in Greater Manchester, with preliminary evidence suggesting this intervention may be successful in improving patient outcomes. Plans are currently underway to pilot a model based upon CURE in other sites across England. To inform implementation, we conducted a qualitative study, which aimed to identify factors influencing healthcare professionals' implementation behaviour within the pilot site.MethodsIndividual, semi-structured telephone interviews were conducted with 10 purposively sampled health professionals involved in the delivery and implementation of the CURE project pilot. Topic guides were informed by the Theoretical Domains Framework (TDF). Transcripts were analysed in line with the framework method, with data coded to TDF domains to highlight important areas of influence and then mapped to the COM-B to support future intervention development.ResultsEight TDF domains were identified as important areas influencing CURE implementation; 'environmental context and resources' (physical opportunity), 'social influence' (social opportunity), 'goals', 'professional role and identity' and 'beliefs about consequences' (reflective motivation), 'reinforcement' (automatic motivation), 'skills' and 'knowledge' (psychological capability). Most domains had the potential to both hinder and/or facilitate implementation, with the exception of 'beliefs about consequences' and 'knowledge', which were highlighted as facilitators of CURE. Participants suggested that 'environmental context and resources' was the most important factor influencing implementation; with barriers most often related to challenges integrating into the wider healthcare context.ConclusionsThis qualitative study identified multi-level barriers and facilitators to CURE implementation. The use of theoretical frameworks allowed for the identification of domains known to influence behaviour change, and thus can be taken forward to develop targeted interventions to support future service implementation. Future work should focus on discussing these findings with a broad range of stakeholders, to ensure resultant intervention strategies are feasible and practicable within a healthcare context. These findings complement wider evaluative work to support nationwide roll out of NHS funded tobacco dependence treatment services in acute care trusts.
| S-EPMC8136754 | biostudies-literature
Project description:IntroductionSelf-management support can enable and empower people living with and beyond cancer to take an active role in managing long-term consequences of cancer treatment. Healthcare professionals are key to promoting patients to self-manage, however, they do not routinely engage in these discussions. This review aims to understand what works for whom and in what circumstances in relation to practitioners engaging with supporting people living with and beyond cancer to self-manage long-term consequences of systemic anticancer treatment.Methods and analysisWe will follow five steps for undertaking the realist review: (1) define the review scope, (2) develop initial programme theories, (3) evidence search, (4) selection and appraisal and (5) data extraction and synthesis. We will combine an informal literature search with a theory-based approach, using the theoretical domains framework, and stakeholder feedback to develop initial programme theories. We will search Medline, EMBASE, CINAHL, Scopus, PsycINFO, ERIC and AMED databases to September 2019, and supplement this with citation tracking, grey literature and practitioner surveys. Data selection will be based on relevance and rigour. Data will be extracted and synthesised iteratively, and causal links between contexts, mechanism and outcomes illuminated in the process. The results will be reported according to the Realist And Meta-narrative Evidence Syntheses: Evolving Standards quality and publication standards.Ethics and disseminationWe have received ethical approval through the Research Ethics Committee, Faculty of Medicine and Health Sciences, University of East Anglia (ref 2 01 819-124). We will disseminate to the research community through conference presentations and a peer-reviewed journal article. We will work with healthcare organisations, cancer charities and patients to agree a strategy for disseminating to these groups.Prospero registration numberCRD42019120910.
| S-EPMC7473657 | biostudies-literature