Diverse Experiences of unpaid Carers Across the caring Trajectory (DECAT)
The number of people caring for an elderly, sick or disabled relative or friend is growing worldwide, so finding the optimum ways to support them in their caring role is increasingly important. The experience of providing care can be very different depending on carers’ particular circumstances, but a recent review confirmed few studies had addressed the differences between subgroups of carers. Furthermore, different patterns and trajectories of caring are likely to influence the way individuals perceive their caring role. Still, most research studies do not follow-up the same carers, meaning changes over time are rarely captured. This project aims to address these evidence gaps by providing more detailed analyses to feed in to Local Authority policy and commissioning decisions.
NIHR School for Social Care Research
April 2020-Sept 2022
The main aim of this study is to identify factors associated with carer’s satisfaction with social care services and quality of life over time.
The findings will provide an in-depth understanding of the carers’ experience of services for commissioners, policymakers, providers and practitioners working with carers and their families. We have worked in partnership with local authority commissioners and data analysts from an early stage which increases the likelihood that the recommendations emerging from this study will be implemented. The information gathered during this project will enable local authorities to tailor services to support carers more effectively.
Articles reporting the findings will be published in two peer-reviewed journals and a practitioner publication. We’ll give presentations at academic conferences and Local Authority network meetings. The Local Authorities involved in the project will receive feedback reports and lay summaries will be sent to participating carers and disseminated through our networks and social media. Co-produced short videos of carers speaking about their experiences will be made available online.
 Such as carers of people with physical disabilities and carers of people with mental ill-health.
|Diane Fox is the Principal Investigator, responsible for co-ordinating the various elements of the project. She will lead the questionnaire data collection and analysis and is the point of liaison for collaborating organisations.|
|Lizzie Welch is a Co-Investigator, she will be leading on the qualitative data collection and analysis of the qualitative interviews.
|Shereen is a Professor of Health and Social Care Policy at the London School of Hygiene and Tropical Medicine
Shereen’s background is in Medical Demography and Population Science, with a Masters degree from the LSHTM, and a PhD from the London School of Economics. Before joining the LSHTM in January 2021, she was a Professor of Care and Health Policy Evaluation and Associate Director of the PSSRU at the University of Kent. Prior to this, she was a Chair at King’s College London. Shereen maintain honorary professorships at the University of Kent, KCL and University of Southern Queensland, Australia.
|Lisa Richardson is the Public and Patient Involvement (PPI) manager so will be supporting the activities to engage and work with social care service users, their carers and members of the wider public throughout the project.
March 2021 – Presentation to the annual conference of the National Institute for Health Research (NIHR) School for Social Care Research
Click here to read our blog co-written with Mandy, a carer who attended one of the workshops we held for carers to help us shape our research.
|September 2020- Project advisory group meeting|
|Jan-July 2021 – data collection delayed due to COVID-19 restrictions|
|August 2021- Survey data collection starts|
|Sept 2021 – interview data collection starts|
|Stakeholder consultation event with social care providers, commissioners, managers and practitioners.
Thursday 17th September, 11.00am-12.30pm
Sign up here: https://bit.ly/3iNHUOr
|23rd September 2020 – Project advisory group meeting|
|9th November 2020 – Stakeholder workshop (carers)|
|12th November 2020 – Stakeholder workshop (carers)|
|29th March 2021 – Presentation at the National Institute for Health Research (NIHR) School for Social Care Research Annual Conference|
|1st April 2021 – Presentation to the annual conference of the Public Involvement in Research Advisory Network|
If you are providing care for a friend, relative or neighbour who needs help because they are frail or have an illness or disability, you might like to get involved in this project.
Please get in touch with us, to find out how. See the contact tab.
Diane Fox – Research Officer and NIHR School for Social Care Research Fellow
Tel: 01227 827018