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Carers research group

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Completed projects

Utilising carer-related research and knowledge: a scoping review and information resource

Funded by National Institute for Health Research School for Social Care Research.

An innovative and timely comprehensive scoping review of carer-related knowledge. The review has two complementary purposes. It provides, for the first time, an academically robust and detailed mapping of carer-related evidence and knowledge and underpins a fully accessible web-based resource developed in partnership with, and hosted by, the Social Care Institute for Excellence (SCIE). This resource forms part of SCIE’s suite of resources to support the implementation of the Care Act 2014.

Principal Investigator: Professor Mary Larkin

Identifying exemplar models and support for older carers and carers of people with dementia

This study provided insights into approaches to and the commissioning of support for these two groups of carers. It highlighted the importance of: embedding service developments in carers’ views; the provision of both generic and targeted support which adopts a nuanced and tailored approach; pacing the delivery of information to match carers’ needs; capturing quantitative and qualitative dimensions in service evaluation; increased quantity and longevity of funding. Such insights not only complement existing research but are also generalisable to other countries at a similar stage in the development of carer support. Funded by NHS England.

Principal Investigator: Professor Mary Larkin

Including Family Carers: Adding value and impact to research

A seminar to showcase and discuss the benefits and added value of including family carers in health related research and how such inclusion cancontribute towards increasing the evidence-base and maximising impact, effectiveness and cost-effectiveness of support and interventions. It also provided opportunities to explore the processes involved in broadening organisational and/or funding mandates to include family carers. Funded by the Department of Health and National Institute for Health Research School for Social Care Research.

Principal Investigator: Professor Mary Larkin

Personalisation, the third sector and carers

A study of how the third sector - not-for-profit groups which traditionally have strong community networks - coped with the introduction of the personalisation agenda in relation to carers Funded by the Third Sector Research Centre.

Principal Investigator: Professor Mary Larkin

Carers in the 21st century: developing the evidence base

The seminar series to raise awareness of carers issues and value of carer research across the UK. The seres also facilitated the identification of ways of developing a much –needed coherent and sustainable evidence base about policy , services and interventions that can be used to effect improvements in carers’ quality of life and those they support Funded by ESRC.

Principal Investigator: Professor Mary Larkin

Carers, Service Users and Personal Budgets

An exploration of the impact of a service user becoming a personal budget holder on the carer-service user relationship. Funded by The Carers Federation Ltd.

Principal Investigator: Professor Mary Larkin

The social process of everyday decision-making by people with dementia and their spouses

This research was carried out with couples living with dementia, exploring minor and major decision- making. Outputs include journal articles, reports, a short film and multilingual handbooks to support decision-making by people living with dementia and their family members. Funded by ESRC

Principal Investigator: Dr Geraldine Boyle.

National study of Mental Capacity Act Best Interests Decision-making

This research study, carried out with University of Bristol, was about professional practices in best interests decision making under the Mental Capacity Act (MCA), and was carried out in 2010-11, in four contrasting areas of England amongst health, social care and legal professionals. The data were drawn from: an online survey, telephone interviews and face-to-face interviews. Final report.

Funded by Dept. of Health

Co-investigator: Dr Geraldine Boyle

Falling Off a Cliff at 65: Serious mental health issues in later life

The Open University in Scotland (OUiS) has a well-developed and longstanding relationship with Voluntary Health Scotland. This project will enable The OUiS and Voluntary Health Scotland (VHS) to collaborate on a small scale, policy project related to serious mental health issues in the over 65 population in Scotland patients as well as their carers. In the first phase of this project, two round table discussions were held to gather views from various stakeholders in Scotland. An initial evidence report was provided with some early recommendations. However, this was pre the Covid-19 pandemic and subsequently there has been considerable impact in terms of mental health related issues. The aim of this project is to re-engage with Scottish stakeholders via virtual round tables and establish what impact Covid-19 has had on their ability to access appropriate services and support. Results are being used to inform policy through the publication of a report and in the organisation of a future dissemination event later in 2021. This project has also engaged policy makers in consultation exercises as well as being presented with the findings at the end of this project. We collaborated with colleagues across the OU England & Scotland & Voluntary Health Scotland and numerous stakeholders, external partners and charities in Scotland. This study received funding Higher Education Innovation Fund for Knowledge Exchange (HEIF).

Principal Investigator: Dr Derek Goldman OU Scotland

Co-Investigators: Dr Sharon Mallon, Dr Jitka Vseteckova

Developing an evaluation plan for The Froglife Trust (TFT) – Knowledge Transfer Voucher (KTV) Scheme

Carers are one of several important client groups The Frolife Trust works with. Froglife Trust staff use a range of evaluation tools to gather feedback from a wide range of individuals, including participants, referral agencies and carers/support workers. Data collected from this feedback quantifies the work it delivers and demonstrates the positive impact it has on wildlife conservation. This KTV project was conceived as TFT did not have the in-house expertise and capacity to evaluate the data to provide details of the social impact of their work. We used this KTV funding to create a joint research team between The Open University and TFT to develop an evaluation protocol and guidance for TFT staff to implement it, as well as suggesting possible ways of jointly publicising and disseminating outputs.We collaborated with colleagues across the OU & The Froglife Trust as partner. This study received funding Higher Education Innovation Fund for Knowledge Exchange (HEIF).

Principal Investigator: Dr Jitka Vseteckova

Supporting carers with Carers in Bedfordshire (CiB) – Knowledge Transfer Voucher (KTV) Scheme

CiB help unpaid carers of all ages, right across Bedfordshire, with information, support and advice. The OU helped CiB to become more research-active in order to ensure that services to carers are effective and cost-effective, providing the best value for charitable funding; demonstrate the value of carer support services to statutory health and social care colleagues & give a diverse community of carers an active voice in the direction and development of new services. This project aimed to scope and develop an evaluation framework for CiB’s services; help CiB implement the recent NICE guideline on Supporting Adult Carers locally & to facilitate the exchange of expertise and insights between CiB staff and OU academics around researching care and caring, policy implementation, research knowledge as well as practitioners’ knowledge. Our engagement uncovered a research project CiB were keen to engage with which resulted in a bid to Dunhill Medical Trust to evaluate acoustic monitoring for patients living in their homes and their informal carers submitted in June 2021. We continue our collaboration and have several collaborative projects in the pipeline. We collaborated with colleagues across the OU & Carers in Bedfordshire as partner. This study received funding Higher Education Innovation Fund for Knowledge Exchange (HEIF).

Principal Investigator: Dr Jitka Vseteckova

Carer Research and Knowledge Exchange Resource (CAREN)

Development of a knowledge exchange network for national and international stakeholders based on an independent evidence database of carer–related research and evidence. Funded by Higher Education Innovation Fund.

Principal Investigator: Professor Mary Larkin