Inequalities in informal caregiving over the adult life course in Europe: social participation, health and the influence of Covid-19

Lead Research Organisation: University College London
Department Name: Epidemiology and Public Health

Abstract

This consortium will investigate inequalities in caregiving from a life course perspective. Increased longevity gains have not been
accompanied by an increasing number of years spent disability free, leading to an increased need for care for older people. European
countries vary dramatically in how they have met this rising care demand, but across most of Europe the majority of care is provided
informally by families, friends, or neighbours. Smaller family sizes, partnership dissolution and women's strengthening ties to paid work may
lead to a diminishing pool of informal carers in the face of increasing need. In addition, delayed childbearing means there are likely to be a
growing number of young adults with older parents requiring care, more carers providing care to parents and children simultaneously
(sandwich care), as well as a growing number of adult grandchildren caring for surviving grandparents. In addition, caregiving is not equally
distributed. Women are more likely to provide care, to have provided care for longer and to care more intensively than men, and gender
inequality in who provides care is greater in countries that rely on a family-based model. In addition, caring itself acts as a form of
inequality, limiting access to financial and social resources. Existing evidence suggests that caring leads to labour market exits; reduced
working hours, salaries and pension entitlements; loss of training opportunities and career advancement; and is associated with poorer
psychological and physical health. However, existing research has largely been based on cross-sectional samples of older-adults or has
focussed on care for specific groups, such as dementia sufferers. In addition, most research on caregiving has focused on older spouses, or
older working age carers, while younger carers are often overlooked in policy and research. Younger caregiving occurs at a time when
young adults are seeking to complete education, establish themselves in the job market and form long-term relationships. Young adult
carers are also likely to have fewer financial and socio-emotional resources than older carers. We will harness Europe's longitudinal,
population data investments, as well as a wealth of both methodological and substantive experience in a multidisciplinary team of leading
European academics and non-academic partners to examine inequities in employment, social participation and health between carers and
non-carers at different life stages, as well as the gender, socioeconomic and ethnic differences in the social, economic and health
consequences of caregiving. Comparisons in these life course care inequalities will be made across European country contexts, with a
specific focus on young adult carers as well as those providing care in mid- and later-life. Where data allow, the initial impact of changes in
informal care related to the COVID-19 pandemic will also be included. Finally, we include a specific research objective and work package
focused on working closely with our non-academic partners to translate our results into policy recommendations.

Publications

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Di Gessa G (2022) Young Adult Carers in the UK-New Evidence from the UK Household Longitudinal Study. in International journal of environmental research and public health

 
Description Young adult carers are less likely than their peers to obtain a university degree or enter employment.
Carers experience worsening mental health at the time of transitioning to care and this persists for several years. If they transition to intensive care this is a greater decline in mental health and a decline in physical health is also seen.
Young adult carers report fewer close friendships around the time of transitioning to care but this does not persist.
Exploitation Route We are working with Carers Trust and universities to explore this currently.
Sectors Communities and Social Services/Policy

Education

Healthcare

URL https://www.ucl.ac.uk/epidemiology-health-care/research/epidemiology-and-public-health/research/eurocare-inequalities-informal-caregiving-over
 
Description The Office for Students changed its guidance to universities as a direct result of our work. Universities are now required to include young adult carers in their amongst the groups they target for widening participation in terms of both recruitment and support.
First Year Of Impact 2024
Sector Education
 
Description Change to Office for Students Guidance
Geographic Reach National 
Policy Influence Type Citation in other policy documents
Impact The Office for Students added Young Adult Carers to the list of groups of students who universities must target for widening participation and supporting outcomes. They explicitly cited our research in making this change.
URL https://www.officeforstudents.org.uk/advice-and-guidance/promoting-equal-opportunities/equality-of-o...
 
Description DWP Methods Advisory Group
Geographic Reach National 
Policy Influence Type Participation in a guidance/advisory committee
Impact I have been part of discussions with DWP staff on uptake of engagement with troubled families and solutions to the current 'missing workers' concern.
 
Description Government Office for Science
Geographic Reach National 
Policy Influence Type Contribution to a national consultation/review
Impact A report from our meetings was presented to government for their resilience planning activities. (We don't receive feedback on how they used it).
 
Description New systematic review on respite care with Carers trust
Geographic Reach Multiple continents/international 
Policy Influence Type Contribution to a national consultation/review
Impact The systematic review will inform provision of respite care for informal carers.
 
Description Submission of evidence to APPG on YAC
Geographic Reach National 
Policy Influence Type Contribution to a national consultation/review
URL https://carers.org/all-party-parliamentary-group-appg-for-young-carers-and-young-adult-carers/appg-o...
 
Description UCL Widening Participation
Geographic Reach National 
Policy Influence Type Contribution to new or improved professional practice
 
Description Young Carers APPG
Geographic Reach National 
Policy Influence Type Participation in a guidance/advisory committee
Impact Discussions in the APPG has led the Children's Commissioner to begin working more closely with schools on how they can support young carers.
 
Description DTP Studentship on Caregiving and health behaviours using a life course perspective
Amount £160,000 (GBP)
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 08/2021 
End 04/2025
 
Description Inequalities In Health, Social Participation, Work & Education Of Young Carers
Amount £300,101 (GBP)
Funding ID WEL/FR-000023798 
Organisation Nuffield Foundation 
Sector Charity/Non Profit
Country United Kingdom
Start 05/2023 
End 02/2026
 
Description Understanding Society Research Data Fellowship- Does the flexible working policy improve couples' well-being and reduce gender inequality?
Amount £121,120 (GBP)
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 08/2023 
End 08/2024
 
Description Carers Trust 
Organisation The Carers Trust
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution We meet with our contact at Carers Trust regularly and share results with her.
Collaborator Contribution She feedsback on our work and contributed to our recent 'Roundtable' event.
Impact Carers Trust are consulting to inform our academic outputs and were active in a recent non-academic international 'Roundtable' event to share and discuss our work and ideas with non-academic stakeholders across Europe
Start Year 2021
 
Description New collaboration with Nicola Brimblecombe and colleagues at LSE 
Organisation London School of Economics and Political Science (University of London)
Country United Kingdom 
Sector Academic/University 
PI Contribution As a result of outputs from this project, we have been approached by Nicola Brimblecombe at LSE to begin collaboration on a new scoping review on associations between unpaid care work and dementia.
Collaborator Contribution This is likely to lead to a new funding application on unpaid care and dementia as well as an academic output on current evidence in this area.
Impact None yet
Start Year 2024
 
Description This is a European consortium grant so we are working with partners at the University of Dortmund, Duesseldorf, Autonomous University of Barcelona, Norwegian Public Health Institute 
Organisation Autonomous University of Barcelona (UAB)
Country Spain 
Sector Academic/University 
PI Contribution We lead this consortium and are responsible for UK and international comparative outputs.
Collaborator Contribution Each is contributing to international comparative outputs as well as leading national outputs within their own country teams. We all meet together monthly online and many subgroups meet separately in addition.
Impact Conference abstract accepted to RC28 Social Stratification conference at LSE April 2022. We have submitted abstracts to Society for Life course and Longitudinal Studies conference and Society for Social Medicine conference. We are currently working on three UK-specific academic papers, one UK-Germany comparative paper and a comparative paper across European partners.
Start Year 2021
 
Description This is a European consortium grant so we are working with partners at the University of Dortmund, Duesseldorf, Autonomous University of Barcelona, Norwegian Public Health Institute 
Organisation Heinrich Heine University Düsseldorf
Country Germany 
Sector Academic/University 
PI Contribution We lead this consortium and are responsible for UK and international comparative outputs.
Collaborator Contribution Each is contributing to international comparative outputs as well as leading national outputs within their own country teams. We all meet together monthly online and many subgroups meet separately in addition.
Impact Conference abstract accepted to RC28 Social Stratification conference at LSE April 2022. We have submitted abstracts to Society for Life course and Longitudinal Studies conference and Society for Social Medicine conference. We are currently working on three UK-specific academic papers, one UK-Germany comparative paper and a comparative paper across European partners.
Start Year 2021
 
Description This is a European consortium grant so we are working with partners at the University of Dortmund, Duesseldorf, Autonomous University of Barcelona, Norwegian Public Health Institute 
Organisation Norwegian Institute of Public Health
Country Norway 
Sector Public 
PI Contribution We lead this consortium and are responsible for UK and international comparative outputs.
Collaborator Contribution Each is contributing to international comparative outputs as well as leading national outputs within their own country teams. We all meet together monthly online and many subgroups meet separately in addition.
Impact Conference abstract accepted to RC28 Social Stratification conference at LSE April 2022. We have submitted abstracts to Society for Life course and Longitudinal Studies conference and Society for Social Medicine conference. We are currently working on three UK-specific academic papers, one UK-Germany comparative paper and a comparative paper across European partners.
Start Year 2021
 
Description This is a European consortium grant so we are working with partners at the University of Dortmund, Duesseldorf, Autonomous University of Barcelona, Norwegian Public Health Institute 
Organisation Technical University of Dortmund
Country Germany 
Sector Academic/University 
PI Contribution We lead this consortium and are responsible for UK and international comparative outputs.
Collaborator Contribution Each is contributing to international comparative outputs as well as leading national outputs within their own country teams. We all meet together monthly online and many subgroups meet separately in addition.
Impact Conference abstract accepted to RC28 Social Stratification conference at LSE April 2022. We have submitted abstracts to Society for Life course and Longitudinal Studies conference and Society for Social Medicine conference. We are currently working on three UK-specific academic papers, one UK-Germany comparative paper and a comparative paper across European partners.
Start Year 2021
 
Description 2nd Eurocare Roundtable 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Third sector organisations
Results and Impact Second Eurocare Rountable event held in Barcelona included all Eurocare country collaborators, all non-academic partners across partner countries, and members of funding scheme Societal Advisory Board. We presented our findings thus far, they shared their work and their thoughts on the implications of our research .
Year(s) Of Engagement Activity 2023
 
Description BSPS conference presentation YAC - ed & emp 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact Presentation of UK findings on education and employment outcomes for young adult carers to Annual Meeting of the British Society of Population Studies.
Year(s) Of Engagement Activity 2022
 
Description Blog on Education and employment outcomes for young adult carers 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Blog written on our work showing that young adult carers are less likely to gain a university degree or enter employment.
Year(s) Of Engagement Activity 2023
 
Description Carers Trust Interview on BBC breakfast TV 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Director of Carers Trust cited our work on BBC breakfast TV
Year(s) Of Engagement Activity 2023
 
Description Departmental seminar 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact Departmental seminar to introduce Eurocare project to colleagues.
Year(s) Of Engagement Activity 2022
 
Description EPA conference presentation -- age, care & health 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact Presentation of findings on age differences in association between transition to care and changes in mental and physical health to European Psychology Association.
Year(s) Of Engagement Activity 2022
 
Description Gave oral and written evidence to APPG on Young Adult Carers 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact We submitted written evidence and were invited to give oral evidence to the APPG on Young and Young Adult Carers. Our work was heavily cited in the output of recommendations to policy makers.
Year(s) Of Engagement Activity 2023
 
Description IDEAR network presentation 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact Presentation of life course consequences of providing care to 'Integrated Datasets in Europe for Aging Research' IDEAR network.
Year(s) Of Engagement Activity 2022
 
Description LIVES meeting 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Invited to participate in LIVES (Swiss Centre for Expertise in Life Course Research) end-of-award conference in Geneva.
Year(s) Of Engagement Activity 2022
 
Description Presentation and workshop facilitation Linking London event on Young Adult Carers in Higher education 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Schools
Results and Impact Participation in Linking London Event with young adult carers to support entry into higher education
Year(s) Of Engagement Activity 2024
 
Description Roundtable Event 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Third sector organisations
Results and Impact We held an online 'Roundtable' event attended by about 30 stakeholders working in the area of care: third sector organisations, local government, research funders from across Europe. We shared our research plans and initial findings. They shared the work of their organisations. We discussed how to improve the research in breakout groups and recorded thoughts on padlets.
Year(s) Of Engagement Activity 2022
 
Description SLLS symposium on YAC 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact International conference symposium on Eurocare findings on Young Adult Carers across our European partners. Society for Longitudinal and Lifecourse Studies in Cleveland, OH, USA.
Year(s) Of Engagement Activity 2022
 
Description Symposium on Ageing and Wellbeing in China 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact Presenting results on cognitive function from a life course perspective to Chinese conference.
Year(s) Of Engagement Activity 2023
 
Description blog YAC descriptive work 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Blog on who are young adult carers in the UK
Year(s) Of Engagement Activity 2022
URL https://childofourtimeblog.org.uk/2022/11/why-its-time-to-care-more-about-the-uks-young-caregivers/
 
Description blog nonstandard work 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Blog on our work on wellbeing of parents working nonstandard work hours.
Year(s) Of Engagement Activity 2022
URL https://worklife-blog.org/2022/07/unsocial-working-hours-are-these-compatible-for-parents-and-famili...
 
Description blog parental mental health during pandemic 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact blog on research findings on mental health of millennial parents with young children during pandemic.
Year(s) Of Engagement Activity 2023
URL https://worklife-blog.org/2023/01/pandemic-parents-who-was-most-affected/
 
Description blog young carers systematic review 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Blog on our systematic review of evidence on the health of young carers.
Year(s) Of Engagement Activity 2022
URL https://childofourtimeblog.org.uk/2022/08/what-do-we-know-about-the-health-of-young-carers-and-is-it...
 
Description presentation to academic international conference on social stratification 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Presentation at academic conference
Year(s) Of Engagement Activity 2022
 
Description workshop with young adult and young carers on education 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Undergraduate students
Results and Impact We held a workshop with young adult carers to discuss the barriers to entry and completion of higher education.
Year(s) Of Engagement Activity 2024