The development of the Delphi technique, as a survey method of research, and examples of its use are described. The technique's key characteristics, anonymity, use of experts and controlled feedback, are examined. The method's usefulness in structuring group communication for the discussion of specific issues and as an aid to policy making is discussed in the light of the technique's perceived drawbacks and limitations.
A systematic review of qualitative studies conducted by Frances Bunn and colleagues identifies and describes the experiences of patients and caregivers on receiving and adapting to a diagnosis of dementia.
BackgroundPatient and public involvement (PPI) is a prerequisite for many funding bodies and NHS research ethics approval. PPI in research is defined as research carried out with or by the public rather than to, about or for them. While the benefits of PPI have been widely discussed, there is a lack of evidence on the impact and outcomes of PPI in research.ObjectivesTo determine the types of PPI in funded research, describe key processes, analyse the contextual and temporal dynamics of PPI and explore the experience of PPI in research for all those involved. Mechanisms contributing to the routine incorporation of PPI in the research process were assessed, the impact of PPI on research processes and outcomes evaluated, and barriers and enablers to effective PPI identified.DesignA three-staged realist evaluation drawing on Normalisation Process Theory to understand how far PPI was embedded within health-care research in six areas: diabetes mellitus, arthritis, cystic fibrosis, dementia, public health and learning disabilities. The first two stages comprised a scoping exercise and online survey to chief investigators to assess current PPI activity. The third stage consisted of case studies tracked over 18 months through interviews and document analysis. The research was conducted in four regions of England.ParticipantsNon-commercial studies currently running or completed within the previous 2 years eligible for adoption on the UK Clinical Research Network portfolio. A total of 129 case study participants included researchers and PPI representatives from 22 research studies, and representatives from funding bodies and PPI networks.ResultsIn the scoping 51% (n = 92) of studies had evidence of PPI and in the survey 79% (n = 80), with funder requirements and study design the strongest influence on the extent of PPI. There was little transparency about PPI in publicly accessible information. In case studies, context–mechanism–outcome configurations suggested that six salient actions were required for effective PPI. These were a clear purpose, role and structure for PPI; ensuring diversity; whole research team engagement with PPI; mutual understanding and trust between the researchers and lay representatives; ensuring opportunities for PPI throughout the research process; and reflecting on, appraising and evaluating PPI within a research study. PPI models included a ‘one-off’ model with limited PPI, a fully intertwined model in which PPI was fully embedded and an outreach model with lay representatives linking to broader communities. Enabling contexts included funder, topic/design, resources, research host, organisation of PPI and, most importantly, relationships. In some case studies, lack of coherence in defining PPI persisted, with evidence of a dual role of PPI representative/study participant. Evidence of PPI outcomes included changes to study design, improvements to recruitment materials and rates, and dissemination.ConclusionsSix salient actions were required for effective PPI and were characterised by a shared understanding of moral and methodological purposes of PPI, a key individual co-ordinating PPI, ensuring diversity, a research team positive about PPI input and fully engaged with it, based on relationships that were established and maintained over time, and PPI being evaluated in a proactive and systematic approach. Future work recommendations include exploring the impact of virtual PPI, cost analysis and economic evaluation of the different models of PPI, and a longer-term follow-up study of the outcomes of PPI on research findings and impact on services and clinical practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.
BackgroundEvidence suggests that amongst people with dementia there is a high prevalence of comorbid medical conditions and related complaints. The presence of dementia may complicate clinical care for other conditions and undermine a patient’s ability to manage a chronic condition. The aim of this study was to scope the extent, range and nature of research activity around dementia and comorbidity.MethodsWe undertook a scoping review including all types of research relating to the prevalence of comorbidities in people with dementia; current systems, structures and other issues relating to service organisation and delivery; patient and carer experiences; and the experiences and attitudes of service providers. We searched AMED, Cochrane Library, CINAHL, PubMed, NHS Evidence, Scopus, Google Scholar (searched 2012, Pubmed updated 2013), checked reference lists and performed citation searches on PubMed and Google Scholar (ongoing to February 2014).ResultsWe included 54 primary studies, eight reviews and three guidelines. Much of the available literature relates to the prevalence of comorbidities in people with dementia or issues around quality of care. Less is known about service organisation and delivery or the views and experiences of people with dementia and their family carers. There is some evidence that people with dementia did not have the same access to treatment and monitoring for conditions such as visual impairment and diabetes as those with similar comorbidities but without dementia.ConclusionsThe prevalence of comorbid conditions in people with dementia is high. Whilst current evidence suggests that people with dementia may have poorer access to services the reasons for this are not clear. There is a need for more research looking at the ways in which having dementia impacts on clinical care for other conditions and how the process of care and different services are adapting to the needs of people with dementia and comorbidity. People with dementia should be included in the debate about the management of comorbidities in older populations and there needs to be greater consideration given to including them in studies that focus on age-related healthcare issues.Electronic supplementary materialThe online version of this article (doi:10.1186/s12916-014-0192-4) contains supplementary material, which is available to authorized users.
The COVID-19 pandemic has disproportionately affected care home residents internationally, with 19–72% of COVID-19 deaths occurring in care homes. COVID-19 presents atypically in care home residents and up to 56% of residents may test positive whilst pre-symptomatic. In this article, we provide a commentary on challenges and dilemmas identified in the response to COVID-19 for care homes and their residents. We highlight the low sensitivity of polymerase chain reaction testing and the difficulties this poses for blanket screening and isolation of residents. We discuss quarantine of residents and the potential harms associated with this. Personal protective equipment supply for care homes during the pandemic has been suboptimal and we suggest that better integration of procurement and supply is required. Advance care planning has been challenged by the pandemic and there is a need to for healthcare staff to provide support to care homes with this. Finally, we discuss measures to implement augmented care in care homes, including treatment with oxygen and subcutaneous fluids, and the frameworks which will be required if these are to be sustainable. All of these challenges must be met by healthcare, social care and government agencies if care home residents and staff are to be physically and psychologically supported during this time of crisis for care homes.
There is widespread evidence both of the exclusion of older people from clinical research, and of under-recruitment to clinical trials. This review and opinion piece provides practical advice to assist researchers both to adopt realistic, achievable recruitment rates and to increase the number of older people taking part in research. It analyses 14 consecutive recently published trials, providing the number needed to be screened to recruit one older participant (around 3:1), numbers excluded (up to 49%), drop out rates (5-37%) and whether the planned power was achieved. The value of planning and logistics are outlined, and approaches to optimising recruitment in hospital, primary care and care home settings are discussed, together with the challenges of involving older adults with mental incapacity and those from minority groups in research. The increasingly important task of engaging older members of the public and older patients in research is also discussed. Increasing the participation of older people in research will improve the generalisability of research findings and inform best practice in the clinical management of the growing older population.
SUMMARYObjectives To write a narrative review of the roles of primary care practitioners in caring for people with dementia in the community. Methods The systematic review carried out for the NICE/SCIE Guidelines was updated from January 2006, Cochrane Reviews were identified, and other publications found by consultation with experts. Results The insidious and very variable development of dementia syndromes makes recognition of the syndrome problematic in primary care. Dementia is probably under-diagnosed and under treated with an estimated 50% of primary care patients over 65 not diagnosed by their primary care physicians. This problem of under-diagnosis is probably not due to lack of diagnostic skills, but rather to the interaction of case-complexity, pressure on time and the negative effects of reimbursement systems. Primary care physicians often over-estimate the prevalence of dementia syndromes, but in some countries may also overestimate the prevalence of vascular dementia compared with Alzheimer's disease. Diagnosis is a step-wise process which can be aided by use of a cognitive function test, of which there are a number suitable for primary care use. Evidence based practice protocols can enhance detection rates in primary care, and there is growing evidence that communication skills in talking to people with dementia about dementia can be improved. Nevertheless there are multiple obstacles to bringing recognition forward in time, both in public awareness and professional understanding of the early changes in dementia. Conclusions There is insufficient evidence of benefit to justify population screening in primary care but earlier recognition of people with dementia syndrome is possible within primary care. The diagnosis of dementia is a shared responsibility between generalist and specialist disciplines. Primary care physicians should explore patients' ideas and concerns around their symptoms prior to referral and tentatively discuss possible diagnoses. Once the diagnosis has been confirmed, the primary care physician should provide both practical and emotional support to allow the patient and their family to come to terms with living with dementia, and refer them for additional psychosocial support if required.
BackgroundIn the UK there are almost three times as many beds in care homes as in National Health Service (NHS) hospitals. Care homes rely on primary health care for access to medical care and specialist services. Repeated policy documents and government reviews register concern about how health care works with independent providers, and the need to increase the equity, continuity and quality of medical care for care homes. Despite multiple initiatives, it is not known if some approaches to service delivery are more effective in promoting integrated working between the NHS and care homes. This study aims to evaluate the different integrated approaches to health care services supporting older people in care homes, and identify barriers and facilitators to integrated working.MethodsA systematic review was conducted using Medline (PubMed), CINAHL, BNI, EMBASE, PsycInfo, DH Data, Kings Fund, Web of Science (WoS incl. SCI, SSCI, HCI) and the Cochrane Library incl. DARE. Studies were included if they evaluated the effectiveness of integrated working between primary health care professionals and care homes, or identified barriers and facilitators to integrated working. Studies were quality assessed; data was extracted on health, service use, cost and process related outcomes. A modified narrative synthesis approach was used to compare and contrast integration using the principles of framework analysis.ResultsSeventeen studies were included; 10 quantitative studies, two process evaluations, one mixed methods study and four qualitative. The majority were carried out in nursing homes. They were characterised by heterogeneity of topic, interventions, methodology and outcomes. Most quantitative studies reported limited effects of the intervention; there was insufficient information to evaluate cost. Facilitators to integrated working included care home managers' support and protected time for staff training. Studies with the potential for integrated working were longer in duration.ConclusionsDespite evidence about what inhibits and facilitates integrated working there was limited evidence about what the outcomes of different approaches to integrated care between health service and care homes might be. The majority of studies only achieved integrated working at the patient level of care and the focus on health service defined problems and outcome measures did not incorporate the priorities of residents or acknowledge the skills of care home staff. There is a need for more research to understand how integrated working is achieved and to test the effect of different approaches on cost, staff satisfaction and resident outcomes.
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