Regional Working in the East of England: Using the UK National Standards for Public Involvement

Plain English summary: Involving patients and members of the public to help shape and carry out research is recommended in health research in the United Kingdom (UK). There are a number of regional networks of Patient and Public Involvement (PPI) groups, which support the collaboration between researchers, patients and public members. We are a group of researchers, patients and public members who came together via a PPI regional network in the East of England to collaborate on a research study about the extent of feedback from researchers to PPI contributors.The aim of this paper is to use the recently developed UK National Standards for Public Involvement to structure our thinking about what worked well and what did not, within our recently completed study. We believe this paper is one of the first to use the National Standards to structure a retrospective reflection on PPI within a study.Our findings showed that there are benefits of regional working, including easier access to public members and bringing together researchers, public members and those who run PPI groups for research collaboration. The main challenges included involvement of people before studies are funded and working across organisations with different payment processes.The National Standards for Public Involvement has provided a useful framework to consider how best to involve patients and members of the public in research and could be a helpful structure to reflect on successes and challenges in individual projects and also regional, national or international comparisons of PPI in research. Abstract: Background Regional networks of Patient and Public Involvement (PPI) organisations, including academic institutions, health and social care services, charities, patient and public groups and individuals, can play an important part in carrying out health research. In the UK, recommendations by the National Institute of Health Research (NIHR) encourage the use of regional, collaborative networks with shared resources and training. Methods The newly developed UK National Standards for Public Involvement were used as a framework for a retrospective reflection of PPI within a recently completed research study which focused on feedback from researchers to PPI contributors. PPI contributors, those running PPI groups (PPI leads) and researchers involved in the study have contributed to this reflection by completing evaluation forms throughout the research alongside notes of meetings and co-authors' final reflections. Results Results revealed a number of successes where the regional network was particularly useful in bringing together PPI contributors, those who lead PPI groups and researchers. The regional network helped researchers to get in touch with patients and members of the public. Challenges included involving people before funding and bureaucratic and financial barriers when working across different organisations in the region. The importance of working together in flexible, informal ways was key and on-going support for the PPI contributors was vital for continued involvement, including emotional support not just monetary. The first four National Standards of inclusive opportunities, working together, support and learning and communications were particularly useful as means of structuring our reflections. Conclusions To our knowledge, this is one of the first research studies to use the UK National Standards for Public Involvement as a framework to identify what worked well and the challenges of PPI processes. It is suggested that as more reflective papers are published and the National Standards are more widely used in the UK, many lessons can be learnt and shared on how to improve our Patient and Public Involvement within research studies. Evaluations or reflections such as these can further enhance our understanding of PPI with implications for regional, national and international comparisons.Peer reviewedFinal Published versio

Correction to: Abstracts from the NIHR INVOLVE Conference 2017.

[This corrects the article DOI: 10.1186/s40900-017-0075-x.]

Evaluation of an organisational intervention to promote integrated working between health services and care homes in the delivery of end-of-life care for people with dementia:Understanding the change process using a social identity approach

In the United Kingdom, approximately a third of people with dementia live in long-term care facilities for adults, the majority of whom are in the last years of life. Working arrangements between health services and care homes in England are largely ad hoc and often inequitable, yet quality end-of-life care for people with dementia in these settings requires a partnership approach to care that builds on existing practice. This paper reports on the qualitative component of a mixed method study aimed at evaluating an organisational intervention shaped by Appreciative Inquiry to promote integrated working between visiting health care practitioners (i.e. General Practitioners and District Nurses) and care home staff. The evaluation uses a social identity approach to elucidate the mechanisms of action that underlie the intervention, and understand how organisational change can be achieved. We uncovered evidence of both (i) identity mobilisation and (ii) context change, defined in theory as mechanisms to overcome divisions in healthcare. Specifically, the intervention supported integrated working across health and social care settings by (i) the development of a common group identity built on shared views and goals, but also recognition of knowledge and expertise specific to each service group which served common goals in the delivery of end-of-life care, and (ii) development of context specific practice innovations and the introduction of existing end-of-life care tools and frameworks, which could consequently be implemented as part of a meaningful bottom-up rather than top-down process. Interventions structured around a Social Identity Approach can be used to gauge the congruence of values and goals between service groups without which efforts to achieve greater integration between different health services may prove ineffectual. The strength of the approach is its ability to accommodate the diversity of service groups involved in a given area of care, by valuing their respective contributions and building on existing ways of working within which practice changes can be meaningfully integrated.</p

Physical Activity Inclusion in Dementia-Friendly Communities: A Mixed Methods Study

© 2024 The Authors. Published by Human Kinetics, Inc. This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0International License, CC BY 4.0. See: http://creativecommons.org/licenses/by/4.0.Dementia-friendly communities (DFCs) are a policy-endorsed approach to community engagement in England that promotes social inclusion to enable people affected by dementia to live well. Research suggests that physical activity is beneficial in encouraging social connection and improving health. A mixed method sequential study design in England involving a national survey (n = 31) and semi structured interviews (n = 65) in three DFCs was carried out. The aim was to understand how DFC senable people affected by dementia to participate in physical activities. An evaluation framework for DFCs was used to organize and interpret the data, and analysis was informed by the inclusive (social) citizen lens. Findings showed that DFCs offered a range of adapted dementia-inclusive and dementia-specific activities; however, people were not routinely offered information at time of diagnosis. Local authorities (councils) were key to enable access to information and infrastructure change to support sustainable inclusion within their local community.Peer reviewe

BeeZee Bodies Evaluation: Summary Report

© 2023 University of Hertfordshire. This is an open access article distributed under the Creative Commons Attribution License, to view a copy of the license, see: https://creativecommons.org/licenses/by/4.0

BeeZee Bodies Embedded Ethnography Evaluation Project

The Centre for Research in Public Health and Community Care, University of Hertfordshire (UH) were commissioned by BeeZee Bodies (BZB) to bring academic insights and support BZB’s development of future services. This work aimed to explore: - How can BZB best engage diverse communities? - How can evidence and insights be considered from a range of professional perspectives and utilised to shape and influence service development? - If and how can BZB co-produce their services? The project used an ‘embedded ethnography’ approach, a qualitative methodology which enables collaboration and interaction between researchers and those responsible for planning and delivering services, as a way of developing more effective service delivery. This involved four main elements: participation in strategic oversight group (SOG) meetings, qualitative research training for BZB staff, observation of BZB meetings, and primary data collection (focus groups and interviews)

Young onset dementia: Public involvement in co-designing community-based support

Whilst the support requirements of people diagnosed with young onset dementia are well-documented, less is known about what needs to be in place to provide age-appropriate care. To understand priorities for service planning and commissioning and to inform the design of a future study of community-based service delivery models, we held two rounds of discussions with four groups of people affected by young onset dementia (n = 31) and interviewed memory services (n = 3) and non-profit service providers (n = 7) in two sites in England. Discussions confirmed published evidence on support requirements, but also reframed priorities for support and suggested new approaches to dementia care at the community level. This paper argues that involving people with young onset dementia in the assessment of research findings in terms of what is important to them, and inviting suggestions for solutions, provides a way for co-designing services that address the challenges of accessing support for people affected by young onset dementia

Exploring English policymakers' attitudes towards dementia risk reduction: A qualitative study

© 2023 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd. This is an open access article distributed under the terms of the Creative Commons Attribution License (CC BY), https://creativecommons.org/licenses/by/4.0/Aim: A growing evidence‐base indicates that dementia occurrence can be changed. This has been linked to potentially modifiable risk factors. Risk reduction and primary prevention strategies are increasingly recognized as needing to include population‐level policies to tackle the social and commercial determinants of health. How this knowledge can influence policymaking on dementia prevention is unknown. Understanding attitudes of policymakers is an important step in translating evidence into practice, helping to gauge system readiness for implementation, and potential barriers and enablers for influencing policy. The aim of this qualitative study is to explore the understanding of, and attitudes to, dementia risk reduction and population‐level prevention strategies amongst English policymakers at national, regional, and local level. Methods: Semi‐structured interviews were undertaken with a range of dementia and prevention policymakers, with purposive sampling of national and local policymakers, including politicians, government officials, health system leaders, academics, and dementia charity directors. Analysis of interview transcripts was undertaken by thematic analysis. Results: 14 policymakers were interviewed between November 2021 and February 2022. Three main themes were identified (1) Preventability of dementia, (2) Prevention approach, (3) Barriers and facilitators to improving the approach. Discussion: Policymakers generally held dementia to be partially preventable. Policymakers recognised that both individual‐ and population‐level approaches to primary prevention of dementia are required – with some policymakers perceiving that population‐level approaches are under‐utilised. Key barriers to implementing more population‐level approaches were identified as the complexity and co‐ordination required to effectively tackle upstream determinants of health.Peer reviewe

Emergency ambulance service involvement with residential care homes in the support of older people with dementia : an observational study

© 2014 Amador et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.BACKGROUND: Older people resident in care homes have a limited life expectancy and approximately two-thirds have limited mental capacity. Despite initiatives to reduce unplanned hospital admissions for this population, little is known about the involvement of emergency services in supporting residents in these settings.METHODS: This paper reports on a longitudinal study that tracked the involvement of emergency ambulance personnel in the support of older people with dementia, resident in care homes with no on-site nursing providing personal care only. 133 residents with dementia across 6 care homes in the East of England were tracked for a year. The paper examines the frequency and reasons for emergency ambulance call-outs, outcomes and factors associated with emergency ambulance service use. RESULTS: 56% of residents used ambulance services. Less than half (43%) of all call-outs resulted in an unscheduled admission to hospital. In addition to trauma following a following a fall in the home, results suggest that at least a reasonable proportion of ambulance contacts are for ambulatory care sensitive conditions. An emergency ambulance is not likely to be called for older rather than younger residents or for women more than men. Length of residence does not influence use of emergency ambulance services among older people with dementia. Contact with primary care services and admission route into the care home were both significantly associated with emergency ambulance service use. The odds of using emergency ambulance services for residents admitted from a relative's home were 90% lower than the odds of using emergency ambulance services for residents admitted from their own home. CONCLUSIONS: Emergency service involvement with this vulnerable population merits further examination. Future research on emergency ambulance service use by older people with dementia in care homes, should account for important contextual factors, namely, presence or absence of on-site nursing, GP involvement, and access to residents' family, alongside resident health characteristics.Peer reviewedFinal Published versio

Age-appropriate services for people diagnosed with young onset dementia (YOD): a systematic review.

BACKGROUND: Literature agrees that post-diagnostic services for people living with young onset dementia (YOD) need to be age-appropriate, but there is insufficient evidence of 'what works' to inform service design and delivery. OBJECTIVE: To provide an evidence base of age-appropriate services and to review the perceived effectiveness of current interventions. METHODS: We undertook a systematic review including all types of research relating to interventions for YOD. We searched PubMed, CINHAL Plus, SCOPUS, EBSCO Host EJS, Social Care Online and Google Scholar, hand-searched journals and carried out lateral searches (July-October 2016). Included papers were synthesised qualitatively. Primary studies were critically appraised. RESULTS: Twenty articles (peer-reviewed [n = 10], descriptive accounts [n = 10]) discussing 195 participants (persons diagnosed with YOD [n = 94], caregivers [n = 91] and other [n = 10]) were identified for inclusion. Services enabled people with YOD to remain living at home for longer. However, service continuity was compromised by short-term project-based commissioning and ad-hoc service delivery. CONCLUSION: The evidence on the experience of living with YOD is not matched by research and the innovation needed to mitigate the impact of YOD. The inclusion of people with YOD and their caregivers in service design is critical when planning support in order to delay institutional care