Diverse Experiences of unpaid Carers Across the caring Trajectory (DECAT)


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Background

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[1]. 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.

Funder

NIHR School for Social Care Research

Timeline

April 2020-Sept 2023

Aim

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.

Objectives

  • To identify the factors that contribute to changes in carers’ quality of life and satisfaction with services over time.

  • To explore the extent of differences in quality of life and satisfaction between carers of people with mental health problems, learning disabilities or autism, dementia or other needs.

  • To identify the combinations of support, services and other factors that enable carers to optimise their quality of life.

  • To understand the specific barriers in accessing services faced by carers from ‘frequently excluded’ groups (e.g. LGBT+ carers, or those from Ethnic Minority backgrounds) and identify ways to overcome them.


Methods

  1. A questionnaire will be sent to carers recruited via local authorities containing repeated measures previously collected in the 2018/19 Personal Social Services Survey of Adult Carers in England (PSS SACE), plus additional questions. The degree to which carers’ satisfaction and quality of life scores differ from scores from the previous questionnaires will be examined.
    Factors associated with the changes will be explored and subgroups of carers compared.

  2. To follow up questionnaire responses in more depth, semi-structured telephone interviews will be conducted with a subset of 40 participants who responded to the survey. In addition, up to 20 carers from groups that are 'frequently excluded' will be recruited via community groups and informal networks, to include the perspectives and experiences of carers not using social care services. Interview transcripts will be analysed using framework analysis, which will offer insights about the services, support and other factors carers consider key to their satisfaction and quality of life over time.


Anticipated impact

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. Outputs 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. [1] 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. Diane is also a carer for her parent who has vascular dementia.
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.
Sarah Birch 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.
Publications

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.
Activities
August 2022-ongoing – Produce video case studies
Jan-July 2021 – data collection delayed due to COVID-19 restrictions
August 2021- April 2023: Survey data collection
Sept 2021 – May 2023: Interview data collection
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

E mail: d.fox@kent.ac.uk

Tel: 01227 827018

Twitter: @PSSRUDiane