scholarly journals Effective public involvement in the HoST-D Programme for dementia home care support: From proposal and design to methods of data collection (innovative practice)

Dementia ◽  
2017 ◽  
Vol 18 (7-8) ◽  
pp. 3173-3186 ◽  
Author(s):  
Clarissa Giebel ◽  
Brenda Roe ◽  
Anthony Hodgson ◽  
David Britt ◽  
Paul Clarkson ◽  
...  
Keyword(s):  
Data Collection ◽  
Public Involvement ◽  
Reference Group ◽  
Future Research ◽  
Advisory Group ◽  
Model Case ◽  
Home Support ◽  
People With Dementia ◽  
Health And Social Care ◽  
Case Vignettes

Public involvement is an important element in health and social care research. However, it is little evaluated in research. This paper discusses the utility and impact of public involvement of carers and people with dementia in a five-year programme on effective home support in dementia, from proposal and design to methods of data collection, and provides a useful guide for future research on how to effectively involve the public. The Home SupporT in Dementia (HoST-D) Programme comprises two elements of public involvement, a small reference group and a virtual lay advisory group. Involving carers and people with dementia is based on the six key values of involvement – respect, support, transparency, responsiveness, fairness of opportunity, and accountability. Carers and people with dementia gave opinions on study information, methods of data collection, an economic model, case vignettes, and a memory aid booklet, which were all taken into account. Public involvement has provided benefits to the programme whilst being considerate of the time constraints and geographical locations of members.

scholarly journals Evaluating the effectiveness of different approaches to home support for people in later stage dementia: a protocol for an observational study

2017 ◽  
Vol 29 (7) ◽  
pp. 1213-1221 ◽  
Author(s):  
Helen Chester ◽  
Paul Clarkson ◽  
Jane Hughes ◽  
Ian Russell ◽  
Joan Beresford ◽  
...  
Keyword(s):  
Observational Study ◽  
Service Providers ◽  
Geographical Area ◽  
National Study ◽  
Structured Interviews ◽  
Major Health Problem ◽  
Home Support ◽  
People With Dementia ◽  
Health And Social Care ◽  
Person With Dementia

ABSTRACTBackground:Dementia is a major health problem with a growing number of people affected by the condition, both directly and indirectly through caring for someone with dementia. Many live at home but little is known about the range and intensity of the support they receive. Previous studies have mainly reported on discrete services within a single geographical area. This paper presents a protocol for study of different services across several sites in England. The aim is to explore the presence, effects, and cost-effectiveness of approaches to home support for people in later stage dementia and their carers.Methods:This is a prospective observational study employing mixed methods. At least 300 participants (people with dementia and their carers) from geographical areas with demonstrably different ranges of services available for people with dementia will be selected. Within each area, participants will be recruited from a range of services. Participants will be interviewed on two occasions and data will be collected on their characteristics and circumstances, quality of life, carer health and burden, and informal and formal support for the person with dementia. The structured interviews will also collect qualitative data to explore the perceptions of older people and carers.Conclusions:This national study will explore the components of appropriate and effective home support for people with late stage dementia and their carers. It aims to inform commissioners and service providers across health and social care.

scholarly journals Barriers and Enablers in Implementing Electronic Consultations in Primary Care: Scoping Review (Preprint)

2020 ◽  
Author(s):  
Rebecca Baines ◽  
John Tredinnick-Rowe ◽  
Ray Jones ◽  
Arunangsu Chatterjee
Keyword(s):  
Primary Care ◽  
Scoping Review ◽  
Public Involvement ◽  
Grey Literature ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Reference List ◽  
Multiple Perspectives ◽  
Health And Social Care ◽  
The Impact

BACKGROUND Often promoted as a way to address increasing demands, improve patient accessibility, and improve overall efficiency, electronic consultations are becoming increasingly common in primary care, particularly in light of the current COVID-19 pandemic. However, despite their increasing use, a theoretically informed understanding of the factors that support and inhibit their effective implementation is severely limited. OBJECTIVE With this scoping review, we sought to identify the factors that support and inhibit the implementation of electronic consultations in primary care. METHODS In total, 5 electronic databases (PubMed, Medline, Embase, CINAHL, and PsycINFO) were systematically searched for studies published in 2009-2019 that explored the impact and/or implementation of electronic consultations in primary care. Database searches were supplemented by reference list and grey literature searches. Data were analyzed using inductive thematic analysis and synthesized using Normalization Process Theory (NPT). RESULTS In total, 227 articles were initially identified and 13 were included in this review. The main factors found to hinder implementation included awareness and expectations; low levels of engagement; perceived suitability for all patient groups, conditions, and demographics; cost; and other contextual factors. Reports of information technology reliability and clinical workload duplication (as opposed to reduction) also appeared detrimental. Conversely, the development of protocols and guidance; patient and staff education; strategic marketing; and patient and public involvement were all identified as beneficial in facilitating electronic consultation implementation. CONCLUSIONS This review highlights the need for proactive engagement with patients and staff to facilitate understanding and awareness, process optimization, and delivery of coherent training and education that maximizes impact and success. Although the necessity to use online methods during the COVID-19 pandemic may have accelerated awareness, concerns over workload duplication and inequality of access may remain. Future research should explore health inequalities in electronic consultations and their economic impacts from multiple perspectives (eg, patient, professional, and commissioner) to determine their potential value. Further work to identify the role of meaningful patient involvement in digital innovation, implementation, and evaluation is also required following the rapid digitization of health and social care.

scholarly journals State-of-the-Art Sensors for Remote Care of People with Dementia during a Pandemic: A Systematic Review

Sensors ◽  
2021 ◽  
Vol 21 (14) ◽  
pp. 4688
Author(s):  
Chandan Kumar Behera ◽  
Joan Condell ◽  
Shirin Dora ◽  
David S. Gibson ◽  
Gerard Leavey
Keyword(s):  
Systematic Review ◽  
Independent Living ◽  
Assistive Technologies ◽  
Future Research ◽  
User Testing ◽  
Safety Measures ◽  
Educational Support ◽  
People With Dementia ◽  
Health And Social Care ◽  
Remote Care

In the last decade, there has been a significant increase in the number of people diagnosed with dementia. With diminishing public health and social care resources, there is substantial need for assistive technology-based devices that support independent living. However, existing devices may not fully meet these needs due to fears and uncertainties about their use, educational support, and finances. Further challenges have been created by COVID-19 and the need for improved safety and security. We have performed a systematic review by exploring several databases describing assistive technologies for dementia and identifying relevant publications for this review. We found there is significant need for appropriate user testing of such devices and have highlighted certifying bodies for this purpose. Given the safety measures imposed by the COVID-19 pandemic, this review identifies the benefits and challenges of existing assistive technologies for people living with dementia and their caregivers. It also provides suggestions for future research in these areas.

scholarly journals Neighbourhoods and dementia in the health and social care context: a realist review of the literature and implications for UK policy development

2012 ◽  
Vol 22 (2) ◽  
pp. 150-163 ◽  
Author(s):  
John Keady ◽  
Sarah Campbell ◽  
Helen Barnes ◽  
Richard Ward ◽  
Xia Li ◽  
...  
Keyword(s):  
Built Environment ◽  
Policy Development ◽  
Social Space ◽  
Social Care ◽  
Realist Review ◽  
The Body ◽  
Future Research ◽  
Big Society ◽  
People With Dementia ◽  
Health And Social Care

SummaryThe National Dementia Strategy in England has performed an essential role in transforming health and social care services and improving the commissioning architecture. However, to date, little attention has been paid to understanding the ways in which the outdoor and built environment impacts and intersects with the lives of people with dementia and their carers. One way of better understanding the outdoor and built environment is through a focus on the ‘neighbourhood’ as this is an area of public policy where attempts are being made across disciplines to unpack its meanings, significance and identity. This paper adopts a realist review method to detail the key findings and messages from the body of work that links the experience of living with dementia to the neighbourhood. Our findings from this review are assimilated and defined/presented under three headings, namely: outdoor spaces, built environment, and everyday technologies. These headings and our definitions are not discrete properties and there is some overlap in content. We found no research that sets out to enquire about how people with dementia might define their neighbourhood or that explores everyday neighbourhood practices for those living with the condition. Emerging concepts such as citizenship and, in the UK, the Coalition Government advancement of the ‘Big Society’, promote a vision of civic responsibilities and networked, dementia-capable communities, but evaluation of such initiatives are virtually absent from the literature. The review did uncover some interesting and innovative research methods that extend neighbourhood working, such as the ‘walking interview’. In order to develop a neighbourhood model for dementia, future research should examine the relationship and interaction between the neighbourhood as a social space and as a physical space alongside the active role of people with dementia as ‘place-makers’.

scholarly journals Barriers and Enablers in Implementing Electronic Consultations in Primary Care: Scoping Review

10.2196/19375 ◽  
2020 ◽  
Vol 22 (11) ◽  
pp. e19375
Author(s):  
Rebecca Baines ◽  
John Tredinnick-Rowe ◽  
Ray Jones ◽  
Arunangsu Chatterjee
Keyword(s):  
Primary Care ◽  
Scoping Review ◽  
Public Involvement ◽  
Grey Literature ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Reference List ◽  
Multiple Perspectives ◽  
Health And Social Care ◽  
The Impact

Background Often promoted as a way to address increasing demands, improve patient accessibility, and improve overall efficiency, electronic consultations are becoming increasingly common in primary care, particularly in light of the current COVID-19 pandemic. However, despite their increasing use, a theoretically informed understanding of the factors that support and inhibit their effective implementation is severely limited. Objective With this scoping review, we sought to identify the factors that support and inhibit the implementation of electronic consultations in primary care. Methods In total, 5 electronic databases (PubMed, Medline, Embase, CINAHL, and PsycINFO) were systematically searched for studies published in 2009-2019 that explored the impact and/or implementation of electronic consultations in primary care. Database searches were supplemented by reference list and grey literature searches. Data were analyzed using inductive thematic analysis and synthesized using Normalization Process Theory (NPT). Results In total, 227 articles were initially identified and 13 were included in this review. The main factors found to hinder implementation included awareness and expectations; low levels of engagement; perceived suitability for all patient groups, conditions, and demographics; cost; and other contextual factors. Reports of information technology reliability and clinical workload duplication (as opposed to reduction) also appeared detrimental. Conversely, the development of protocols and guidance; patient and staff education; strategic marketing; and patient and public involvement were all identified as beneficial in facilitating electronic consultation implementation. Conclusions This review highlights the need for proactive engagement with patients and staff to facilitate understanding and awareness, process optimization, and delivery of coherent training and education that maximizes impact and success. Although the necessity to use online methods during the COVID-19 pandemic may have accelerated awareness, concerns over workload duplication and inequality of access may remain. Future research should explore health inequalities in electronic consultations and their economic impacts from multiple perspectives (eg, patient, professional, and commissioner) to determine their potential value. Further work to identify the role of meaningful patient involvement in digital innovation, implementation, and evaluation is also required following the rapid digitization of health and social care.

scholarly journals Specialist nursing support for unpaid carers of people with dementia: a mixed-methods feasibility study

2019 ◽  
Vol 7 (12) ◽  
pp. 1-198 ◽  
Author(s):  
Kate Gridley ◽  
Fiona Aspinal ◽  
Gillian Parker ◽  
Helen Weatherly ◽  
Rita Faria ◽  
...  
Keyword(s):  
Data Collection ◽  
Usual Care ◽  
Social Care ◽  
Cross Sectional ◽  
Data Set ◽  
Nursing Support ◽  
Care Services ◽  
People With Dementia ◽  
Health And Social Care ◽  
Collection Methods

Background Unpaid carers are the mainstay of support for people with dementia. Admiral Nursing (AN) is the only specialist nursing service that specifically focuses on supporting such carers, but evidence of its effectiveness, costs and relationships with other health and social care services is limited. This project aimed to address this gap and explore the feasibility of a full-scale formal evaluation. Objectives To explore the relationships between characteristics of carers and people with dementia, service type and input and outcomes; to develop and test data collection methods for subsequent economic evaluation; to explore the effect of AN on outcomes and costs, compared with usual care; to explore the perceived system-wide impact of specialist support for carers of people with dementia, compared with usual care; and to implement new data collection methods in AN, which could also be used by other services, to facilitate evaluation. Design A mixed-methods study, using secondary analysis of an administrative data set, and primary (cross-sectional) quantitative and qualitative data collection. Setting Qualitative research with carers in four areas of England; a survey of carers in 32 local authority areas (16 with and 16 without AN); and qualitative interviews with professionals in four areas. Participants Thirty-five carers of people with dementia and 20 professionals were interviewed qualitatively; 346 carers completed in-scope questionnaires (46% through AN services and 54% from matched non-AN areas). Interventions Specialist nursing support for carers of people with dementia (with AN as an exemplar) compared with usual care. Main outcome measures The Adult Social Care Outcomes Toolkit for Carers; the EuroQol-5 Dimensions, five-level version; and the Caregiver Self-Efficacy for Managing Dementia Scale. Data sources Dementia UK’s AN administrative data set. Results Admiral Nurses are successfully targeting the most complex cases. They work predominantly with older carers who have the main responsibility for the person with dementia, who are heavily involved in caring activity and who may be at risk. Three outcome areas that are important to carers of people with dementia and are potentially affected by receiving support are (1) carer self-efficacy, (2) carer quality of life (3) and carer mental and physical health. The carers in the survey receiving support from AN were older, were more heavily involved in caring and had poorer outcomes than carers not in receipt of such support. When these differences were controlled for, carers supported by AN had better outcomes, although the differences did not reach statistical significance. Health and social care costs were similar in both groups. The perceived system-wide impact of services, such as AN, is not well understood by professional stakeholders. Limitations Challenges were experienced in identifying similar carers in areas with or without an AN service and in the cross-sectional nature of the work. Conclusions Specialist nursing support to carers of people with dementia may enable them to continue providing care to the end or very close to the end of the dementia journey. The outcomes for such carers may be no different from, or even slightly better than, those of similar carers without this support, although the costs to health and social care services are the same in each case. Future work Future research could investigate the impact of specialist support for carers on admission to long-term care. There is also a need for more work to encourage routine use of the selected outcome measures in dementia service delivery. Funding The National Institute for Health Research Health Services and Delivery Research programme.

A Systematic Literature Review of the EFQM Excellence Model from 1991 to 2019

1970 ◽  
Vol 2 (2) ◽  
pp. 11-15
Author(s):  
Muhammad Yousaf ◽  
Petr Bris
Keyword(s):  
Quality Management ◽  
Data Collection ◽  
Literature Review ◽  
Systematic Literature Review ◽  
Quantitative Research ◽  
Web Of Science ◽  
State Of The Art ◽  
Future Research ◽  
European Foundation ◽  
The Subject

A systematic literature review (SLR) from 1991 to 2019 is carried out about EFQM (European Foundation for Quality Management) excellence model in this paper. The aim of the paper is to present state of the art in quantitative research on the EFQM excellence model that will guide future research lines in this field. The articles were searched with the help of six strings and these six strings were executed in three popular databases i.e. Scopus, Web of Science, and Science Direct. Around 584 peer-reviewed articles examined, which are directly linked with the subject of quantitative research on the EFQM excellence model. About 108 papers were chosen finally, then the purpose, data collection, conclusion, contributions, and type of quantitative of the selected papers are discussed and analyzed briefly in this study. Thus, this study identifies the focus areas of the researchers and knowledge gaps in empirical quantitative literature on the EFQM excellence model. This article also presents the lines of future research.

scholarly journals Reflective insights from developing a palliative care children and young people’s advisory group

2021 ◽  
pp. 026921632097603
Author(s):  
Anna Roach ◽  
Debbie Braybrook ◽  
Steve Marshall
Keyword(s):  
Palliative Care ◽  
Young People ◽  
Health Research ◽  
School Health ◽  
Public Involvement ◽  
After School ◽  
Advisory Group ◽  
Research Projects ◽  
Children And Young People ◽  
Care Research

Background: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research. Aim: To plan and deliver a Young People’s Advisory Group in palliative care and health research at a secondary school. Findings: Attending an after-school ‘Health and Social Research Methods Club’ for 11 weeks benefitted children and researchers. Children were taught about data collection methods, data analysis and ethics in health research and used these skills to provide valuable feedback which has been implemented in current palliative care research projects. Children took part in considered discussions around palliative care topics and enjoyed attending the group. Conclusion: This project has equipped researchers with skills and provided a structured template for future Young People’s Advisory Groups, ensuring the unique voices of children and young people are considered and valued in future palliative care research.

scholarly journals Accuracy of State-Level Surveillance during Emerging Outbreaks of Respiratory Viruses: A Model-Based Assessment

2021 ◽  
pp. 0272989X2110222
Author(s):  
Yuwen Gu ◽  
Elise DeDoncker ◽  
Richard VanEnk ◽  
Rajib Paul ◽  
Susan Peters ◽  
...  
Keyword(s):  
Growth Rate ◽  
Data Collection ◽  
Disease Progression ◽  
Health Care Providers ◽  
Growth Rates ◽  
State Level ◽  
Future Research ◽  
Care Providers ◽  
State Surveillance ◽  
First Come First Serve

It is long perceived that the more data collection, the more knowledge emerges about the real disease progression. During emergencies like the H1N1 and the severe acute respiratory syndrome coronavirus 2 pandemics, public health surveillance requested increased testing to address the exacerbated demand. However, it is currently unknown how accurately surveillance portrays disease progression through incidence and confirmed case trends. State surveillance, unlike commercial testing, can process specimens based on the upcoming demand (e.g., with testing restrictions). Hence, proper assessment of accuracy may lead to improvements for a robust infrastructure. Using the H1N1 pandemic experience, we developed a simulation that models the true unobserved influenza incidence trend in the State of Michigan, as well as trends observed at different data collection points of the surveillance system. We calculated the growth rate, or speed at which each trend increases during the pandemic growth phase, and we performed statistical experiments to assess the biases (or differences) between growth rates of unobserved and observed trends. We highlight the following results: 1) emergency-driven high-risk perception increases reporting, which leads to reduction of biases in the growth rates; 2) the best predicted growth rates are those estimated from the trend of specimens submitted to the surveillance point that receives reports from a variety of health care providers; and 3) under several criteria to queue specimens for viral subtyping with limited capacity, the best-performing criterion was to queue first-come, first-serve restricted to specimens with higher hospitalization risk. Under this criterion, the lab released capacity to subtype specimens for each day in the trend, which reduced the growth rate bias the most compared to other queuing criteria. Future research should investigate additional restrictions to the queue.

scholarly journals Psychometric properties of the EQ-5D-5L for aboriginal Australians: a multi-method study

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Pedro Henrique Ribeiro Santiago ◽  
Dandara Haag ◽  
Davi Manzini Macedo ◽  
Gail Garvey ◽  
Megan Smith ◽  
...  
Keyword(s):  
Torres Strait Islander ◽  
Discriminant Validity ◽  
Reference Group ◽  
Characteristic Curve ◽  
Well Being ◽  
Two Dimensions ◽  
Future Research ◽  
Partial Credit Model ◽  
Validity And Reliability ◽  
Torres Strait

Abstract Introduction In Australia, health-related quality of life (HRQoL) instruments have been adopted in national population surveys to inform policy decisions that affect the health of Aboriginal and Torres Strait Islanders. However, Western-developed HRQoL instruments should not be assumed to capture Indigenous conceptualization of health and well-being. In our study, following recommendations for cultural adaptation, an Indigenous Reference Group indicated the EQ-5D-5L as a potentially valid instrument to measure aspects of HRQoL and endorsed further psychometric evaluation. Thus, this study aimed to investigate the construct validity and reliability of the EQ-5D-5L in an Aboriginal Australian population. Methods The EQ-5D-5L was applied in a sample of 1012 Aboriginal adults. Dimensionality was evaluated using Exploratory Graph Analysis. The Partial Credit Model was employed to evaluate item performance and adequacy of response categories. Area under the receiver operating characteristic curve (AUROC) was used to investigate discriminant validity regarding chronic pain, general health and experiences of discrimination. Results The EQ-5D-5L comprised two dimensions, Physiological and Psychological, and reliability was adequate. Performance at an item level was excellent and the EQ-5D-5L individual items displayed good discriminant validity. Conclusions The EQ-5D-5L is a suitable instrument to measure five specific aspects (Mobility, Self-Care, Usual activities, Pain/Discomfort, Anxiety/Depression) of Aboriginal and Torres Strait Islander HRQoL. A future research agenda comprises the investigation of other domains of Aboriginal and Torres Strait Islander HRQoL and potential expansions to the instrument.

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