Relationships between sodium, fats and carbohydrates on blood pressure, cholesterol and HbA1c: an umbrella review of systematic reviews.

Background: The relationship between nutrition and health is complex and the evidence to describe it broad and diffuse. This review brings together evidence for the effect of nutrients on cardiometabolic risk factors. Methods: An umbrella review identified systematic reviews of randomised controlled trials and meta-analyses estimating the effects of fats, carbohydrates and sodium on blood pressure, cholesterol and haemoglobin A1c (HbA1c). Medline, Embase, Cochrane Library and Science Citation Index were search through 26 May 2020, with supplementary searches of grey literature and websites. English language systematic reviews and meta-analyses were included that assessed the effect of sodium, carbohydrates or fat on blood pressure, cholesterol and HbA1c. Reviews were purposively selected using a sampling framework matrix. The quality of evidence was assessed with A MeaSurement Tool to Assess systematic Reviews 2 (AMSTAR2) checklist, evidence synthesised in a narrative review and causal pathways diagram. Results: Forty-three systematic reviews were included. Blood pressure was significantly associated with sodium, fibre and fat. Sodium, fats and carbohydrates were significantly associated with cholesterol. Monounsaturated fat, fibre and sugars were associated with HbA1c. Conclusion: Multiple relationships between nutrients and cardiometabolic risk factors were identified and summarised in an accessible way for public health researchers. The review identifies associations, inconsistencies and gaps in evidence linking nutrition to cardiometabolic health.

Adaptability, Scalability and Sustainability (ASaS) of complex health interventions: a systematic review of theories, models and frameworks.

BACKGROUND: Complex health interventions (CHIs) are increasingly used in public health, clinical research and education to reduce the burden of disease worldwide. Numerous theories, models and frameworks (TMFs) have been developed to support implementation of CHIs. This systematic review aims to identify and critique theoretical frameworks concerned with three features of implementation; adaptability, scalability and sustainability (ASaS). By dismantling the constituent theories, analysing their component concepts and then exploring factors that influence each theory the review team hopes to offer an enhanced understanding of considerations when implementing CHIs. METHODS: This review searched PubMed MEDLINE, CINAHL, Web of Science, and Google Scholar for research investigating the TMFs of complex health interventions. Narrative synthesis was employed to examine factors that may influence the adaptability, scalability and sustainability of complex health interventions. RESULTS: A total of 9763 studies were retrieved from the five databases (PubMed, MEDLINE, CINAHL, Web of Science, and Google Scholar). Following removal of duplicates and application of the eligibility criteria, 35 papers were eligible for inclusion. Influencing factors can be grouped within outer context (socio-political context; leadership funding, inter-organisational networks), inner context; (client advocacy; organisational characteristics), intervention characteristics (supervision, monitoring and evaluation), and bridging factors (individual adopter or provider characteristics). CONCLUSION: This review confirms that identified TMFS do not typically include the three components of adaptability, scalability, and sustainability. Current approaches focus on high income countries or generic "whole world" approaches with few frameworks specific to low- and middle-income countries. The review offers a starting point for further exploration of adaptability, scalability and sustainability, within a low- and middle-income context. TRIAL REGISTRATION: Not registered.

Factors within the clinical encounter that impact upon risk assessment within child and adolescent mental health services: a rapid realist synthesis.

Background: Risk assessment is a key process when a child or adolescent presents at risk for self-harm or suicide in a mental health crisis or emergency. Risk assessment by a healthcare professional should be included within a biopsychosocial assessment. However, the predictive value of risk-screening tools for self-harm and suicide in children and adolescents is consistently challenged. A review is needed to explore how best to undertake risk assessment and the appropriate role for tools/checklists within the assessment pathway. Aims: To map research relating to risk assessment for child and adolescent mental health and to identify features that relate to a successful risk assessment. Objectives: To review factors within the clinical encounter that impact upon risk assessments for self-harm and suicide in children and adolescents: i. to conduct a realist synthesis to understand mechanisms for risk assessment, why they occur and how they vary by context ii. to conduct a mapping review of primary studies/reviews to describe available tools of applicability to the UK. Data sources: Databases, including MEDLINE, PsycINFO®, EMBASE, CINAHL, HMIC, Science and Social Sciences Citation Index and the Cochrane Library, were searched (September 2021). Searches were also conducted for reports from websites. Review methods: A resource-constrained realist synthesis was conducted exploring factors that impact upon risk assessments for self-harm and suicide. This was accompanied by a mapping review of primary studies/reviews describing risk-assessment tools and approaches used in UK child and adolescent mental health. Following piloting, four reviewers screened retrieved records. Items were coded for the mapping and/or for inclusion in the realist synthesis. The review team examined the validity and limitations of risk-screening tools. In addition, the team identified structured approaches to risk assessment. Reporting of the realist synthesis followed RAMESES guidelines. Results: From 4084 unique citations, 249 papers were reviewed and 41 studies (49 tools) were included in the mapping review. Eight reviews were identified following full-text screening. Fifty-seven papers were identified for the realist review. Findings highlight 14 explanations (programme theories) for a successful risk assessment for self-harm and suicide. Forty-nine individual assessment tools/approaches were identified. Few tools were developed in the UK, specifically for children and adolescents. These lacked formal independent evaluation. No risk-screening tool is suitable for risk prediction; optimal approaches incorporate a relationship of trust, involvement of the family, where appropriate, and a patient-centred holistic approach. The objective of risk assessment should be elicitation of information to direct a risk formulation and care plan. Limitations: Many identified tools are well-established but lack scientific validity, particularly predictive validity, or clinical utility. Programme theories were generated rapidly from a survey of risk assessment. Conclusions: No single checklist/approach meets the needs of risk assessment for self-harm and suicide. A whole-system approach is required, informed by structured clinical judgement. Useful components include a holistic assessment within a climate of trust, facilitated by family involvement. Study registration: This study is registered as PROSPERO CRD42021276671. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR135079) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 1. See the NIHR Funding and Awards website for further award information.

When young people up to 18 years of age present to health services, having tried to poison themselves, take an overdose or injure themselves, a health professional needs to work out whether this is likely to happen again (risk assessment). Lists of questions or things to look for (risk screening) have proved unreliable. Thorough discussion with the child or teenager may be helpful but takes much time. How can a health professional best use time spent with a young person to prevent further harm and make sure that they get the treatment that they need? This review focuses on young persons who use health services in the UK. Included studies report how health professionals work out whether young people are likely to harm themselves; either how to handle the overall discussion or to use memory aids or checklists (known as tools) to help the discussion. Tools developed in the USA many years ago have not been tested well enough with UK populations. Recent approaches within the UK are used inconsistently. Young persons do not like how they are assessed. Health professionals may use methods that have not been shown to work or use tools differently from how they were designed. This review identified 14 ways to help a young person have valued discussions with a health professional. Health professionals should not simply 'tick boxes'; tools should help them gain a full picture, including input from other family members. Health professionals should create a trusted relationship where the young person feels respected and heard. Tools should not label someone 'at risk' but should support care that reduces the risk of further harm. Health professionals should gather good-quality information that includes asking about thoughts of suicide. Staff should be supported by training, guidance and feedback from experienced colleagues.

Factors which facilitate or impede patient engagement with pulmonary and cardiac rehabilitation: a rapid evaluation mapping review.

Background: There is a considerable body of systematic review evidence considering the effectiveness of rehabilitation programmes on clinical outcomes. However, much less is known about effectively engaging and sustaining patients in rehabilitation. There is a need to understand the full range of potential intervention strategies. Methods: We conducted a mapping review of UK review-level evidence published 2017-21. We searched MEDLINE, EMBASE and the Cumulative Index to Nursing and Allied Health (CINAHL) and conducted a narrative synthesis. Included reviews reported factors affecting commencement, continuation or completion of cardiac or pulmonary rehabilitation, or an intervention to facilitate these factors. Study selection was undertaken independently by two reviewers. Results: In total, we identified 20 review papers that met our inclusion criteria. There was a bias towards reviews considering cardiac rehabilitation, with these numbering 16. An additional 11 unpublished interventions were also identified through internet searching of key websites. The reviews included 60 identifiable UK primary studies that considered factors which affected attendance at rehabilitation; 42 considered cardiac rehabilitation and 18 considering pulmonary rehabilitation. They reported on factors from the patients' point of view, as well as the views of professionals involved in referral or treatment. It was more common for factors to be reported as impeding attendance at rehabilitation rather than facilitating it. We grouped the factors into patient perspective (support, culture, demographics, practical, health, emotions, knowledge/beliefs and service factors) and professional perspective (knowledge: staff and patient, staffing, adequacy of service provision and referral from other services, including support and wait times). We found considerably fewer reviews (n = 3) looking at interventions to facilitate participation in rehabilitation. Although most of the factors affecting participation were reported from a patient perspective, most of the identified interventions were implemented to address barriers to access in terms of the provider perspective. The majority of access challenges identified by patients would not therefore be addressed by the identified interventions. The more recent unevaluated interventions implemented during the COVID-19 pandemic may have the potential to act on some of the patient barriers in access to services, including travel and inconvenient timing of services. Conclusions: The factors affecting commencement, continuation or completion of cardiac or pulmonary rehabilitation consist of a web of complex and interlinked factors taking into consideration the perspectives of the patients and the service providers. The small number of published interventions we identified that aim to improve access are unlikely to address the majority of these factors, especially those identified by patients as limiting their access. Better understanding of these factors will allow future interventions to be more evidence based with clear objectives as to how to address the known barriers to improve access. Limitations: Time limitations constrained the consideration of study quality and precluded the inclusion of additional searching methods such as citation searching and contacting key authors. This may have implications for the completeness of the evidence base identified. Future work: High-quality effectiveness studies of promising interventions to improve attendance at rehabilitation, both overall and for key patient groups, should be the focus moving forward. Funding: This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HSDR programme or the Department of Health. Study registration: The study protocol is registered with PROSPERO [CRD42022309214].

While we know quite a lot about what makes rehabilitation for heart (cardiac) or lung (pulmonary) conditions effective, less is known about how to engage people with these services and how to encourage them to continue to attend. We have looked at what studies have already been done to summarise the factors that affect whether someone chooses to attend rehabilitation and what is being tried to improve rates of attendance. We were particularly interested in people who are less likely to attend for rehabilitation. We searched in research databases for studies published since 2017 that included UK patients and services. We found 17 relevant summary papers which included a total of 52 UK studies. Most of these papers looked at the factors that affect attendance at rehabilitation, with far fewer studies considering ways to improve attendance. There were more studies looking at rehabilitation for cardiac than pulmonary conditions. Whether someone attended rehabilitation was affected by factors such as whether they felt supported, cultural and personal factors, practical factors such as travel and access, plus patient health, emotions, knowledge and beliefs about rehabilitation services. From a staff perspective, knowledge (staff and patient), staffing levels, level of service provision, and referral from other services were believed to affect attendance. We found a few studies where changes had been made to try to improve access including a number of studies of online delivery of rehabilitation services during COVID-19. Our summary of the factors that affect attendance at rehabilitation may be helpful to inform services about what changes they should make in the future to improve levels of attendance.

Effectiveness of iodine-impregnated incise drapes for preventing surgical site infection in patients with clean or clean contaminated wounds: A systematic literature review and cost-consequence analysis.

BACKGROUND: Surgical site infection is a serious complication associated with significant morbidity, mortality and health care expenditure. AIMS: To determine the clinical effectiveness and economic impact of using iodine-impregnated incise drapes for preventing surgical site infection. METHODS: MEDLINE, Embase, Cochrane Library and CINAHL databases were systematically searched. Critical appraisal and synthesis of clinical evidence informed a decision analytical cost-consequence model. FINDINGS: Nine studies were included in the systematic literature review. Evidence from cardiac surgery patients was considered appropriate to inform the cost analysis. The economic model evaluation estimated cost savings of £549 per patient with the iodophor-impregnated drape in the deterministic analysis and a mean cost saving per patient of £554,172 per 1000 in the probabilistic analysis. CONCLUSION: Using iodine-impregnated drapes in cardiac surgery patients may effectively reduce infections and provide cost-savings, but further research is required.

Stakeholder views of services for children and adolescents with obesity: Mega-ethnography of qualitative syntheses.

OBJECTIVE: The efficacy of services for children and adolescents with obesity is well researched, but this review describes what actually matters to stakeholders (children, caregivers, and professionals) in relation to such services. METHODS: A mega-ethnography, an innovative review-of-reviews approach that uses conceptual findings as primary data, was performed. Twelve bibliographic databases (2010-2020) were searched for reviews that considered the values and preferences of stakeholders concerning services or interventions (diet, exercise, lifestyle) that targeted children and adolescents with obesity. RESULTS: From 485 citations, 17 relevant reviews were identified. The synthesis found that the perceived need to address obesity is determined by subjective norms of weight and interactions with health professionals. Children's and caregivers' participation in obesity management services is shaped by their response to content, acceptability, and perceived benefits and demands. Whether they continue with and complete an intervention are determined by its perceived success, beyond just weight loss, including behavior change, enhanced self-esteem, and the provision of timely and relevant support. CONCLUSIONS: Obesity management services must be promoted in a sensitive manner and must be tailored, be varied, and make positive use of family and schools if children and caregivers are to seek and actively engage with them.

Equity in healthcare access and service coverage for older people: a scoping review of the conceptual literature.

There is currently no global review of the conceptual literature on the equity of healthcare coverage (including access) for older people. It is important to understand the factors affecting access to health and social care for this group, so that policy and service actions can be taken to reduce potential inequities. A scoping review of published and grey literature was conducted with the aim of summarising how health and social care service access and coverage for older people has been conceptualised. PubMed, MEDLINE, PsycINFO, CINAHL, Web of Science, SciELO, LILACS, BIREME and Global Index Medicus were searched. Selection of sources and data charting were conducted independently by two reviewers. The database searches retrieved 10 517 citations; 32 relevant articles were identified for inclusion from a global evidence base. Data were summarised and a meta-framework and model produced listing concepts specific to equitable health and social care service coverage relating to older people. The meta-framework identified the following relevant factors: acceptability, affordability, appropriateness, availability and resources, awareness, capacity for decision-making, need, personal social and cultural circumstances, physical accessibility. This scoping review is relevant to the development and specification of policy for older people. It conceptualises those factors, such as acceptability and affordability, that affect an older person's ability and capacity to access integrated, person-centred health and social care services in a meaningful way. These factors should be taken into account when seeking to determine whether equity in service use or access is being achieved for older people.

Risk assessment models for venous thromboembolism in hospitalised adult patients: a systematic review.

INTRODUCTION: Hospital-acquired thrombosis accounts for a large proportion of all venous thromboembolism (VTE), with significant morbidity and mortality. This subset of VTE can be reduced through accurate risk assessment and tailored pharmacological thromboprophylaxis. This systematic review aimed to determine the comparative accuracy of risk assessment models (RAMs) for predicting VTE in patients admitted to hospital. METHODS: A systematic search was performed across five electronic databases (including MEDLINE, EMBASE and the Cochrane Library) from inception to February 2021. All primary validation studies were eligible if they examined the accuracy of a multivariable RAM (or scoring system) for predicting the risk of developing VTE in hospitalised inpatients. Two or more reviewers independently undertook study selection, data extraction and risk of bias assessments using the PROBAST (Prediction model Risk Of Bias ASsessment Tool) tool. We used narrative synthesis to summarise the findings. RESULTS: Among 6355 records, we included 51 studies, comprising 24 unique validated RAMs. The majority of studies included hospital inpatients who required medical care (21 studies), were undergoing surgery (15 studies) or receiving care for trauma (4 studies). The most widely evaluated RAMs were the Caprini RAM (22 studies), Padua prediction score (16 studies), IMPROVE models (8 studies), the Geneva risk score (4 studies) and the Kucher score (4 studies). C-statistics varied markedly between studies and between models, with no one RAM performing obviously better than other models. Across all models, C-statistics were often weak (<0.7), sometimes good (0.7-0.8) and a few were excellent (>0.8). Similarly, estimates for sensitivity and specificity were highly variable. Sensitivity estimates ranged from 12.0% to 100% and specificity estimates ranged from 7.2% to 100%. CONCLUSION: Available data suggest that RAMs have generally weak predictive accuracy for VTE. There is insufficient evidence and too much heterogeneity to recommend the use of any particular RAM. PROSPERO REGISTRATION NUMBER: Steve Goodacre, Abdullah Pandor, Katie Sworn, Daniel Horner, Mark Clowes. A systematic review of venous thromboembolism RAMs for hospital inpatients. PROSPERO 2020 CRD42020165778. Available from https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=165778https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=165778.

Guidance for reporting intervention development studies in health research (GUIDED): an evidence-based consensus study.

OBJECTIVE: To improve the quality and consistency of intervention development reporting in health research. DESIGN: This was a consensus exercise consisting of two simultaneous and identical three-round e-Delphi studies (one with experts in intervention development and one with wider stakeholders including funders, journal editors and public involvement members), followed by a consensus workshop. Delphi items were systematically derived from two preceding systematic reviews and a qualitative interview study. PARTICIPANTS: Intervention developers (n=26) and wider stakeholders (n=18) from the UK, North America and Europe participated in separate e-Delphi studies. Intervention developers (n=13) and wider stakeholders (n=13) participated in a 1-day consensus workshop. RESULTS: e-Delphi participants achieved consensus on 15 reporting items. Following feedback from the consensus meeting, the final inclusion and wording of 14 items with description and explanations for each item were agreed. Items focus on context, purpose, target population, approaches, evidence, theory, guiding principles, stakeholder contribution, changes in content or format during the development process, required changes for subgroups, continuing uncertainties, and open access publication. They form the GUIDED (GUIDance for the rEporting of intervention Development) checklist, which contains a description and explanation of each item, alongside examples of good reporting. CONCLUSIONS: Consensus-based reporting guidance for intervention development in health research is now available for publishers and researchers to use. GUIDED has the potential to lead to greater transparency, and enhance quality and improve learning about intervention development research and practice.

Nursing care left undone in community settings: Results from a UK cross-sectional survey.

AIM: To demonstrate the prevalence of care left undone and its relationship to registered nurse staffing levels within community nursing. BACKGROUND: Much research has been completed on nursing care left undone in the acute sector. Little has been done in the community nursing context. METHOD: Secondary analysis from a cross-sectional survey of 3,009 registered nurses working in the community and care home sector was completed. Measures reported are 'care left undone', 'nurse staffing levels' and 'type of shift'. RESULTS: Only 37% of community respondents, and 81% of care home staff, reported having the planned number of nurses on their last shift. Prevalence of care left undone was 34% in the community sector, 33% in the care home sector and 23% in primary care. Care left undone increased as the proportion of registered nurses fell below planned numbers. CONCLUSION: Care left undone is a significant issue across the community nursing context and is related to registered nurse staffing levels. IMPLICATIONS FOR NURSING MANAGEMENT: This work is the first to look directly at the relationship of registered nurse staffing levels to care left undone in the community. Current policy on safe staffing needs to ensure consideration of the community nursing context.

A systematic review of the impact of 'missed care' in primary, community and nursing home settings.

AIM: To explore 'missed care' in relation to primary and community settings, including nursing homes, and to build an understanding of implications for patients, public, politicians and policymakers. BACKGROUND: Missed care occurs when any aspect of required patient care is omitted or delayed. Little attention has examined missed care in primary, community and nursing home settings. METHODS: Systematic review of the literature. Searches were conducted of PubMed, CINAHL, Google Scholar (July 2018). The quality of empirical studies was appraised using CASP and SURE tools. RESULTS: The search identified 15 metrics papers (2004-2019) and eight empirical papers (2015-2018) (five studies). Empirical studies were rated as good quality. Missed care impacts on safety in community/primary care contexts and differs from acute care. Causes of missed care include acuity, complexity of cases, volume of care and organisational factors. Metrics have been adapted to community/nursing home settings but not in a standardised way. Tools are required to evaluate missed care within a culture of personal reflection and quality improvement. CONCLUSION: The prominence of missed acute care should not distract from its impact in primary, community and nursing home settings. Nurse leaders should consider causes for missed care, and how it is conceptualized and evaluated. IMPLICATIONS FOR NURSING MANAGEMENT: This review offers evidence for exploring, measuring and evaluating missed care locally.

Developing interventions to improve health: a systematic mapping review of international practice between 2015 and 2016.

BACKGROUND: Researchers publish the processes they use to develop interventions to improve health. Reflecting on this endeavour may help future developers to improve their practice. METHODS: Our aim was to collate, describe, and analyse the actions developers take when developing complex interventions to improve health. We carried out a systematic mapping review of empirical research studies that report the development of complex interventions to improve health. A search was undertaken of five databases over 2015-2016 using the term 'intervention dev*'. Eighty-seven journal articles reporting the process of intervention development were identified. A purposive subset of 30 articles, using a range of published approaches to developing interventions, was selected for in-depth analysis using principles of realist synthesis to identify the actions of intervention development and rationales underpinning those actions. RESULTS: The 87 articles were from the USA (39/87), the UK (32/87), continental Europe (6/87), and the rest of the world (10/87). These mainly took a pragmatic self-selected approach (n = 43); a theory- and evidence-based approach, e.g. Intervention Mapping, Behaviour Change Wheel (n = 22); or a partnership approach, e.g. community-based participatory research, co-design (n = 10). Ten actions of intervention development were identified from the subset of 30 articles, including identifying a need for an intervention, selecting the intervention development approach to follow, considering the needs of the target population, reviewing published evidence, involving stakeholders, drawing or generating theory, and designing and refining the intervention. Rationales for these actions were that they would produce more engaging, acceptable, feasible, and effective interventions. CONCLUSIONS: Developers take a variety of approaches to the international endeavour of complex intervention development. We have identified and described a set of actions taken within this endeavour regardless of whether developers follow a published approach or not. Future developers can use these actions and the rationales that underpin them to help them make decisions about the process of intervention development. TRIAL REGISTRATION: PROSPERO, CRD42017080545.

Guidance on how to develop complex interventions to improve health and healthcare.

OBJECTIVE: To provide researchers with guidance on actions to take during intervention development. SUMMARY OF KEY POINTS: Based on a consensus exercise informed by reviews and qualitative interviews, we present key principles and actions for consideration when developing interventions to improve health. These include seeing intervention development as a dynamic iterative process, involving stakeholders, reviewing published research evidence, drawing on existing theories, articulating programme theory, undertaking primary data collection, understanding context, paying attention to future implementation in the real world and designing and refining an intervention using iterative cycles of development with stakeholder input throughout. CONCLUSION: Researchers should consider each action by addressing its relevance to a specific intervention in a specific context, both at the start and throughout the development process.

Taxonomy of approaches to developing interventions to improve health: a systematic methods overview.

BACKGROUND: Interventions need to be developed prior to the feasibility and piloting phase of a study. There are a variety of published approaches to developing interventions, programmes or innovations to improve health. Identifying different types of approach, and synthesising the range of actions taken within this endeavour, can inform future intervention development. METHODS: This study is a systematic methods overview of approaches to intervention development. Approaches were considered for inclusion if they described how to develop or adapt an intervention in a book, website or journal article published after 2007, or were cited in a primary research study reporting the development of a specific intervention published in 2015 or 2016. Approaches were read, a taxonomy of approaches was developed and the range of actions taken across different approaches were synthesised. RESULTS: Eight categories of approach to intervention development were identified. (1) Partnership, where people who will use the intervention participate equally with the research team in decision-making about the intervention throughout the development process. (2) Target population-centred, where the intervention is based on the views and actions of the people who will use it. (3) Evidence and theory-based, where the intervention is based on published research evidence and existing theories. (4) Implementation-based, where the intervention is developed with attention to ensuring it will be used in the real world. (5) Efficiency-based, where components of an intervention are tested using experimental designs to select components which will optimise efficiency. (6) Stepped or phased, where interventions are developed with an emphasis on following a systematic set of processes. (7) Intervention-specific, where an approach is constructed for a specific type of intervention. (8) Combination, where existing approaches to intervention development are formally combined. The actions from approaches in all eight categories were synthesised to identify 18 actions to consider when developing interventions. CONCLUSIONS: This overview of approaches to intervention development can help researchers to understand the variety of existing approaches, and to understand the range of possible actions involved in intervention development, prior to assessing feasibility or piloting the intervention. Findings from this overview will contribute to future guidance on intervention development. TRIAL REGISTRATION: PROSPERO CRD42017080553.

Contextualizing the findings of a systematic review on patient and carer experiences of dementia diagnosis and treatment: a qualitative study.

BACKGROUND: Involving service users in the systematic review process is seen as increasingly important. As systematic reviews often include studies from diverse settings and covering a time span of several decades, involving service users in consideration of applicability to specific populations or settings might make reviews more useful to practitioners and policymakers. OBJECTIVES: To test and contextualize the findings of a systematic review of qualitative studies looking at patient and carer experiences of diagnosis and treatment of dementia. METHODS: Results from the systematic review were discussed in focus groups and semi-structured interviews with patient, public and professional participants in the South East of England. Analysis was guided by coding frameworks developed from the results of the systematic review. PARTICIPANTS: We recruited 27 participants, including three people with dementia, 12 carers, six service providers and five older people without dementia. RESULTS: Findings from the focus groups and interviews were consistent with those from the systematic review and suggest that our review findings were applicable to the local setting. We found some evidence that access to information and diagnostic services had improved but, as in the systematic review, post-diagnosis support was still often experienced as inadequate. CONCLUSIONS: Focus groups and interviews with service users and their representatives can provide useful contextual information. However, such strategies can require considerable investment of the part of the researcher in terms of time and resources, and more work is needed to refine strategies and establish the benefits for patients and the organization of services.

Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: a systematic review of qualitative studies.

BACKGROUND: Early diagnosis and intervention for people with dementia is increasingly considered a priority, but practitioners are concerned with the effects of earlier diagnosis and interventions on patients and caregivers. This systematic review evaluates the qualitative evidence about how people accommodate and adapt to the diagnosis of dementia and its immediate consequences, to guide practice. METHODS AND FINDINGS: We systematically reviewed qualitative studies exploring experiences of community-dwelling individuals with dementia, and their carers, around diagnosis and the transition to becoming a person with dementia. We searched PubMed, PsychINFO, Embase, CINAHL, and the British Nursing Index (all searched in May 2010 with no date restrictions; PubMed search updated in February 2012), checked reference lists, and undertook citation searches in PubMed and Google Scholar (ongoing to September 2011). We used thematic synthesis to identify key themes, commonalities, barriers to earlier diagnosis, and support identified as helpful. We identified 126 papers reporting 102 studies including a total of 3,095 participants. Three overarching themes emerged from our analysis: (1) pathways through diagnosis, including its impact on identity, roles, and relationships; (2) resolving conflicts to accommodate a diagnosis, including the acceptability of support, focusing on the present or the future, and the use or avoidance of knowledge; and (3) strategies and support to minimise the impact of dementia. Consistent barriers to diagnosis include stigma, normalisation of symptoms, and lack of knowledge. Studies report a lack of specialist support particularly post-diagnosis. CONCLUSIONS: There is an extensive body of qualitative literature on the experiences of community-dwelling individuals with dementia on receiving and adapting to a diagnosis of dementia. We present a thematic analysis that could be useful to professionals working with people with dementia. We suggest that research emphasis should shift towards the development and evaluation of interventions, particularly those providing support after diagnosis.