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.
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.
Organisations
- University College London (Lead Research Organisation)
- London School of Economics and Political Science (University of London) (Collaboration)
- TU Dortmund University (Collaboration)
- The Carers Trust (Collaboration)
- Norwegian Institute of Public Health (Collaboration)
- Heinrich Heine University Düsseldorf (Collaboration)
- Autonomous University of Barcelona (UAB) (Collaboration)
- Carers Trust (Project Partner)
Publications
Blundell E
(2024)
Longitudinal pathways between childhood BMI, body dissatisfaction, and adolescent depression: an observational study using the UK Millenium Cohort Study.
in The lancet. Psychiatry
Campbell CL
(2023)
Operationalization of Intrinsic Capacity in Older People and Its Association With Subsequent Disability, Hospital Admission and Mortality: Results From The English Longitudinal Study of Ageing.
in The journals of gerontology. Series A, Biological sciences and medical sciences
Chen B
(2023)
Parenthood and psychological distress among English Millennials during the second wave of the COVID-19 pandemic: evidence from the Next Steps cohort study.
in Social psychiatry and psychiatric epidemiology
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
Gagné T
(2023)
Mental health inequalities during the second COVID-19 wave among Millennials who grew up in England: Evidence from the Next Steps cohort study.
in Journal of affective disorders
Hansen T
(2023)
Emerging costs in a "hidden" workforce: The longitudinal psychosocial effects of caregiving during the COVID-19 pandemic among Norwegian adults
in Scandinavian Journal of Psychology
King M
(2023)
Does young adulthood caring influence educational attainment and employment in the UK and Germany?
in Journal of Social Policy
Lacey R
(2024)
Mental and physical health changes around transitions into unpaid caregiving in the UK: a longitudinal, propensity score analysis
in The Lancet Public Health
Lacey RE
(2023)
Inequalities in associations between young adult caregiving and social relationships: Evidence from the UK Household Longitudinal Study.
in Journal of adolescence
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 |