Caterina Rohde-Abuba, Berlin School of Economics and Law
Olga Tkach, University of Helsinki
Research on au pairs and immigrant nannies has typically focused on migration but also touches on the complex dynamics of care relationships with employing families (Hess 2009; Búriková & Miller 2010; Rohde-Abuba & Tkach 2016). Due to weak regulation, these workers face vulnerability to human rights abuse and exploitation in employing families (Búriková & Miller 2010; Stenum 2011; Chuang 2012). Care relations can be shaped by neo-colonial variants of racism (Rohde-Abuba 2016), requiring significant "emotional labor" from care workers to provide childcare when being mistreated or exploited (Tkach 2016). However, within global care chains, au pair/nanny jobs can also improve the life chances of the workers’ own families, for example, through remittances (Hochschild 2000; Parreñás 2001; Bikova 2017).
This interdisciplinary symposium aims to draw attention to the impact of au pair/nanny work on the children involved. Using empirical data from care workers and children, it explores how working conditions affect child wellbeing and children’s rights as elaborated in the UN Convention on the Rights of the Child (UNCRC).
Based on qualitative data, Nazlı Akay will evaluate the research and practice in the past ten years concerning the triangular relationship between migrant nannies, parents, and children, and its effects on wellbeing, pointing out to gaps and offering suggestions. Li Xinran examines how au pairs in research interviews critically discuss childcare practices of employing families. Sara Eldén and Terese Anving will present unique interview data with children, who reflect on the role of au pairs and nannies for their individual wellbeing. Mariya Stoyanova Bikova’s ethnographic research will focus on Filipina au pairs’ care practices for their own children and siblings back home.
Papers:
1) Nazlı Akay (Birmingham City University): “Migrant nannies, parenting and well-being: The perspectives from the past and current research"
2) Li Xinran (BTU Cottbus-Senftenberg): “Chinese au pairs’ critical reflections on host families’ child-raising practices and children’s wellbeing”
3) Sara Eldén/Terese Anving (both Lund University): “Children’s narratives of nanny and au pair care”
4) Mariya Stoyanova Bikova (Western Norway University of Applied Sciences): “Filipina au pairs’ care relations and practices to their own children and siblings”
Discussants:
Olga Tkach & Caterina Rohde-Abuba
Minna Zechner, University of Helsinki
Karen Duncan, University of Manitoba
Access to public health and long-term care helps ensure a life of dignity and equality, protecting rights of older adults in need of care and family carers who provide most of that care. However, UN Sustainable Development Goals indicators include household expenditure on primary health care but not on long-term or social care, and the European Commission identifies financial resources as significant barriers to long-term and social care access. Care-related out-of-pocket expenses (OPE) by older adults and family carers may exceed their disposable income, forcing impossible choices among life essentials like food, medicine, and care services. In the United States one in six older adults with care needs face catastrophic expenses (>40% of disposable income), while nearly18% of Canadian family carers reported that OPE caused them financial hardship.
This symposium focuses on care-related OPE by care receivers and carers and resulting consequences such as insufficient or inadequate care, unsafe living environments, deteriorating health, and financial insecurity. Four symposium papers address the costs of care from diverse perspectives: social and policy contexts (North America, Europe, Asia), care sector (care receivers, family carers and public services), expense type (goods and services) and via qualitative and quantitative data.
Rainville et al. share estimates of US caregivers’ OPE from survey and diary data. Duncan et al. examine the relationship between OPE and financial hardship for low- income carers in Canada. Niemelä et al. report on qualitative interviews with Finnish care receivers about what care costs they consider excessive v. value for money. Ikeda et al. discuss implications of Japan’s long-term care insurance scheme for working caregivers and the expenses of private services. Discussants Robert Anderson and Päivi Topo will highlight the symposium’s key question as to whether private care-related expenditures deprive care receivers and carers of fundamental rights to adequate care and financial security.
Papers:
Chuck Rainville, Alessandra Raimondi, & Selena Caldera (AARP, USA): ‘Caregiving’s Cost, Economic Value, and Promising Practices to Support Caregiver’s Financial Well- Being’. The authors estimate the annual economic value of family caregiving in the US using data from the AARP Caregiver Out-of-Pocket Costs study, which estimates caregivers’ care-related expenses based on both survey data and a diary study, and the latest data on the financial and employment impacts of caregiving on family caregivers from the 2025 Caregiving in the US study.
Karen Duncan, Shahin Shooshtari, Janet Fast, & Md. Aslam Hossain (University of Manitoba & University of Alberta, Canada): ‘Financial hardship among carers in low-income: The role of care-related out-of-pocket expenditures.’ The most recent Canadian survey data are used by the authors to investigate the relationship between care-related OPE and financial hardship among carers in low-income. The results have implications for the ability of carers to provide for their own care needs in later life.
Viivi Niemelä, Minna Zechner, Motoko Ishikawa & Laura Saarukka (University of Helsinki, Finland): ‘Out-of-pocket expenditure: Value for money or not worth spending?’ Qualitative analysis of interviews with older adults and their carers on what they consider expensive and value for money regarding OPE are provided by the authors, who also supplement their work with survey data on older adults’ views on affordability of health and social care.
Shingou Ikeda (Japan Institute for Labor Policy and Training, Japan): ‘Expectation and Reality of out-of-pocket expenses of services for combining work and elder care’. Analysis of quantitative survey data on out-of-pocket expenses to provide care to later life families, focusing on working carers who report that Long-term Care Insurance care services are insufficient to enable combining work and care. The Japanese government stresses expanding private care services in addition to public long-term care insurance services to support working carers. The OPE of private care services create a financial strain on working carers.
Discussants:
Robert Anderson, Chairperson of the Administrative Board, Family Carers Ireland; Chairperson of the Advisory Board, ESRC Centre for Care, Sheffield; former Head of Social Policies, Eurofound will compare the presentations in light of policy frameworks and instruments.
Päivi Topo (Adjunct Professor), Ombudsman for older people in Finland considers the financial costs of care as social and human rights.
Bernhard Weicht, University of Innsbruck, Austria
Multiple voices call for developing integrated, empowering and inclusive LTC policies and interventions to secure the right to affordable and good quality LTC services for all persons, as stated in Principle 18 of the European Pillar of Social Rights. The recent EU Care Strategy establishes furthermore the aim that high-quality care services should benefit the wellbeing, health and social inclusion of people in need of care and in/formal caregivers, while providing good employment opportunities and making the care system more efficient and sustainable through increased fiscal revenues and social contributions.
These aims and principles are fostering new debates within national LTC systems with ideas travelling and practices diffusing in search of promising ways to tackle the main challenges while safeguarding and promoting fundamental rights and freedoms of citizens. Yet, the formulation of EU policies and guidelines is broad and might be open to diverse interpretations and definitions of LTC-related rights.
Diversity of trajectories and timing of policy developments are likely to amend otherwise consensually agreed terms and ideas. This can be challenging for meeting policy goals under a common EU strategy.
In this symposium, we start from the polysemic nature of policy ideas and terms and discuss the meanings of taken-for-granted LTC concepts that frame how different stakeholders deal with LTC challenges. We take a comparative, cross-national approach and investigate how these variations and differentiations might relate to the European Pillar of Social Rights. The proposed symposia will share work developed by the Horizon Europe Consortium LeTs-Care – Learning from Long-Term care practices for the EU Care strategy - and present the results of research carried out in seven countries (Italy, Denmark, The Netherlands, Austria, Lithuania, Portugal and Spain) on five different thematic areas related to meanings of needs and quality of care, care work and quality of care work, (in)equalities in LTC, and sustainability of LTC. The symposium will gather five presentations, each tackling one of the afore- mentioned thematic areas of meanings. Research findings are based on extensive literature reviews, policy analyses and interviews with key-stakeholders held in all seven countries, following a common methodological framework. The discussion will not only highlight the relevance of understanding what ideas mean for different stakeholders and in different contexts, but it will also reflect on how different meanings involve different levels of integration of a human-rights based approach to LTC provision.
Papers:
“’Good care’ and good care jobs. A comparison of 7 EU countries", Kristine Krause and Jeanette Pols, University of Amsterdam, Barbara Da Roit, Ca’ Foscari University of Venice
“Priorities in LTC needs assessment in different European countries”, Virginija Posküte, ISM University of Management and Economics
“Human rights and the sustainability of LTC: an analysis of (conflictive) meanings and challenges in seven EU countries”, Roberta Perna, Agencia Estatal Consejo Superior deIinvestigaciones Cientificas (CSIC)
“Inequalities in LTC in seven EU countries: does human rights’ approach make a difference?" Alexandra Lopes, University of Porto
Discussant:
Bent Greve, Roskilde University, Denmark
Teppo Kröger, University of Jyväskylä
Sirpa Wrede, University of Helsinki
The Centre of Excellence in Research on Ageing and Care (CoE AgeCare), which is the main organiser of the 7th Transforming Care Conference, is one of the 12 Centres of Excellence funded by the Research Council of Finland for the period 2018–2025. CoEs are large-scale research investments that are considered to be at the cutting edge of research in their fields, carving out new avenues for research, developing creative research environments and innovations, and training new talented researchers. CoE AgeCare is the first Finnish Centre of Excellence to focus its research on ageing and care.
Now that CoE AgeCare is coming to the end of its term, it is time to look at some of its key research findings. CoE AgeCare is organised around four collaborating research groups based at the Universities of Jyväskylä, Helsinki and Tampere. This symposium will present the research carried out in each group. The key feature of the work of CoE AgeCare has been to approach care as a multidimensional issue, and thus to study different forms of care in relation to national and international care policies, population ageing, the agency of older people, the increasing digitalization of societies, as well as increasing migration. Care poverty, that is, the lack of adequate care and support for older people, has been one of the key themes, together with trends in care policies, agency in decision-making about care and the living environment, health and functioning of the ageing population, the relationship between migration backgrounds and vulnerability of older people, and the digital transformation of care work and the everyday lives of older people.
The symposium will highlight key findings from this research. The speakers of the symposium are leaders of the four research groups of CoE AgeCare.
Papers:
The ageing population, health and functioning, professor Marja Jylhä, Tampere University
International trends and issues in care policy, professor Teppo Kröger, University of Jyväskylä
The relationship between migration backgrounds and vulnerability of older people, professor Sirpa Wrede, University of Helsinki
Digitalisation, ageing and care, professor Sakari Taipale, University of Jyväskylä
Discussant:
Professor emerita Gabrielle Meagher, University of Sydney
Kirstein Rummery, University of Stirling
Ricardo Rodrigues, Lisbon School of Economics and Management, University of Lisbon
Long-term care is increasingly understood as a human right and included, for example, in the European Pillar of Social Rights. However, until now studies on whether these rights materialize have been rare. While aggregated indicators on expenditures on long-term care or volumes of services are useful, the key metric to assess whether long-term care systems are fulfilling the right to care is whether the support and care needs of the older and disabled population are being met. We argue that this should be the starting point for the analysis of care policies and that the focus of this examination needs to be on outcomes.
To this end, we propose a symposium that is partially based on book edited by Kröger, Rummery, Brimblecombe and Rodrigues, to be launched in early 2025, making the case for the new alternative term of care poverty. This stands for “inadequate coverage of care needs resulting from an interplay between individual and societal factors”. We aim to kick this research and policy discussion off on the international level, by presenting a series of manuscripts that discuss theoretical underpinnings, methods and empirical applications of care poverty. More specifically: Kirstein Rummery (University of Stirling, UK) will situate care poverty in the context of other care theories and the conflicts inherent in these theories; Ricardo Rodrigues (University of Lisbon, Portugal) will discuss some methodological possibilities to assess care poverty; Christine Kelly (University of Manitoba, Canada) will present results from a community-engaged mixed methods study of care poverty in Canada, in which she will share the process of community-engaged development of a care poverty framework; and Mari Aaltonen (Institute for Health and Welfare, Finland) will apply the concept of care poverty empirically by combining survey data and in-depth interviews of people with dementia and their informal carers in Finland.
Papers:
Care poverty and conflicts in social citizenship: the right to care? (Kirstein Rummery)
Methods to match a novel concept: approaches to measuring care poverty (Ricardo Rodrigues)
Care poverty: centering older and disabled people in the care economy (Christine Kelly)
People with dementia and their informal carers: at particular risk of care poverty (Mari Aaltonen)
Discussants:
TBC
Barbara Da Roit, Department of Philosophy and Cultural Heritage, Ca’ Foscari University of Venice
Shereen Hussein, Department of Health Services Research and Policy, London School of Hygiene & Tropical Medicine
The working conditions in long-term care (LTC) services have garnered growing attention from both scholars and policymakers due to rising global demand and the tragic toll of the COVID-19 pandemic on both care recipients and workers. Despite variations across and within countries, employment in this sector continues to be burdened by long-standing structural issues. These include low wages, non-standard contracts, job precariousness, increased workloads, frequent job shifting, high turnover rates, and elevated levels of stress or burnout.
These persistent challenges not only undermine the wellbeing and dignity of care workers, who often face immense physical and mental strain, but also disrupt the continuity and quality of care services. This, in turn, jeopardizes the overall sustainability of the care sector.
The situation presents a stark contrast to policy efforts aimed at balancing the provision of sufficient, high-quality LTC in ageing societies while managing costs, promoting the employment of women and older workers, and expanding “good quality” service jobs. At the same time, there is a growing need to uphold workers’ rights to fair working conditions, foster social inclusion, and ensure the physical and mental wellbeing of those employed in this critical sector.
This pressing issue demands a deeper understanding of how to measure, explain, and ultimately improve the quality of life at work for LTC workers, with the goal of building a more resilient and sustainable care system for the future.
This session brings together, illustrates, and discusses three distinct research projects that focus on understanding, measuring, explaining, and facilitating the quality of life at work of care workers in England, Italy, and the United States.
The ASCK-WELL project aims to develop a scientifically validated instrument to assess LTC workers' work-related quality of life in England. This tool is essential for addressing the sector's long-standing challenges, including workforce retention and emotional strain heightened by the COVID-19 pandemic. Utilising a mixed-methods approach, the study combines qualitative interviews and advanced psychometric testing (both Rasch and classical methods) to ensure the instrument is robust and applicable across diverse care settings. Key components include a conceptual framework and detailed questionnaire items that reflect the unique experiences of social care workers. The practical utility of ASCK-WELL is emphasised by its co-production with sector stakeholders and the development of an implementation strategy to facilitate widespread use. The ASCK-WELL scale’s practical relevance will enable the sector to monitor, compare, and improve worker well-being, ultimately leading to enhanced care quality, staff satisfaction, and retention. This project holds the potential to transform workforce support by providing a tailored, standardised measurement tool that can inform interventions, improve staff well-being, and enhance care quality across the fragmented care sector.
The QWoRe project, funded by the Italian Ministry of Research and University as a Research project of National Interest under the National Recovery and Resilience Plan, aims to develop a multidisciplinary and integrated analytical framework to understand quality of work in residential LTC services in Italy. The research strategy is based on a mixed-method approach, with the integration of multidisciplinary knowledge and insights ranging from care and welfare analysis, sociology of work and organisations, social psychology, employment/labour/social security law, sociology of health and illness, statistics, innovation studies. This framework theoretically apprehends how care, employment and migration regimes, service organisation and provision interact with the logics of care and with the profile and strategies of care workers in shaping working conditions and quality of work, in residential care. A combination of secondary quantitative data analysis and analysis of regulations in the field of care, employment and migration will allow the reconstruction of the distinctive features and variations over time of the working conditions in the residential care sector. Furthermore, an in-depth understanding of the quality of work in residential LTC services in three Italian Regions absorb the bulk of Italian residential care facilities draws from mapping the specific care regulation in these regions and through an original qualitative survey of care workers. The data are the object of a fuzzy-set, comparative qualitative analysis (Fs/QCA) to identify the configurations of conditions (e.g. the individual, organisational, regulative factors) that are associated with a quality of work outcomes. Finally, six organisational case studies investigate the mechanisms and processes that are at work in determining specific outcomes.
The National Dementia Workforce Study, sponsored by the NIH National Institute on Aging, is conducting the first large, annual surveys of the dementia care workforce in the United States. Survey data and other linked data sources will create an unprecedented resource for researchers to answer critical questions about the workforce and its impact on care and outcomes for persons living with dementia. The study includes surveys of nursing assistants and personal care aides in nursing homes and assisted living communities, where a large percentage of residents have dementia. Data from first round of the surveys will be available in early 2025. With the data, we will explore the factors associated with these staff reporting high levels of burnout and intention to quit their job. Such factors may include a lack of confidence in their skills, a lack of training opportunities, irregular work schedules, poor interactions with coworkers or supervisors, long commutes, stressful personal circumstances including concerns about immigration status, low wages, risk of injury, and harassment by coworkers and others in the workplace. Organizational characteristics such as facility size and for-profit ownership also will be examined. Using descriptive and multivariate analyses, this presentation will identify the factors most closely associated with burnout and intention to quit to guide future efforts to improve retention and mitigate stress.
The Symposium will be organised as follows. The objectives, research design, and preliminary findings of the three research projects will be presented. A discussion will follow that will highlight conceptual, methodological, and empirical key points based on a comparative analysis of the projects’ endeavours and findings.
Presentations:
- Shereen Hussein, Developing and Prepare for the Implementation of the ASCK-WELL Instrument for Measuring Work-Related Quality of Life in Adult Social Care
- Marco Arlotti, Barbara Da Roit, Stefano Neri, Studying the quality of working life in Italian residential long-term care facilities
- Joanne Spetz, Understanding the factors that are linked with burnout and intentions to quit among aides in nursing homes and assisted living in the U.S.
Discussant: Teppo Kröger
Jingwen Zhang, The University of Manchester
Maria Petrillo, The University of Sheffield
The Quantitative Analysis and Research Network for Care (QAR-Net Care) is an innovative initiative designed to address the existing gap in quantitative care research. Despite burgeoning new care-related data and the advancement in quantitative methods, there is still a lack of care research exploiting these new developments. QAR-Net Care aims to fill this gap by bringing together a diverse group of researchers who are enthusiastic about understanding care inequalities and promoting methodological advancements in care research.
This symposium will showcase works from the QAR-Net Care members focusing on socioeconomic and health-related inequalities in care needs, as well as informal and formal care work. The first paper, by Dr Javiera Cartagena-Farías, explores the relationship between fuel poverty and the development of long-term care needs using Structural Equation Modelling. Next, Dr Baowen Xue discusses the findings from a longitudinal study investigating the changes in cognitive function before and after the transition into care, and whether this depends on care characteristics. Thirdly, Dr Jingwen Zhang and Dr Maria Petrillo explore the impact of means-tested public social care support on formal and informal social care services use among older adults in England, adopting a sharp regression discontinuity design. Lastly, Harriet Ann Patrick and Christie Butcher will present their research on the employment-related outcomes of care provision across different social groups in the UK. They will discuss how they approach this topic by triangulating different quantitative methods.
Dr Christian Deindl and Professor Matt Bennett will conclude the symposium with a discussion on learning from these four studies, and the future directions of quantitative research in care inequalities. We will also open the floor for questions, encouraging active audience engagement and dialogue around the presented research.
Papers:
Long-Term Care Needs and Fuel Poverty Among Older People: Beyond Energy Consumption and Affordability (Dr Javiera Cartagena-Farías)
Association Between Becoming a Carer and Changes in The Trajectory of Cognitive Function: Results From the English Longitudinal Study of Ageing (Dr Baowen Xue)
The Means-Tested Public Social Care Support and the Use of Formal and Informal Care Among Older People in England (Dr Jingwen Zhang & Dr Maria Petrillo)
Labour Market Participation and Unpaid Care Work in the UK: An Intersectional Analysis (Christie Butcher & Harriet Ann Patrick)
Discussants: Dr Christian Deindl, Professor Matt Benne
Yingzi Shen, University of Sheffield
In recent decades, China has undergone significant demographic and social changes which are characterised by a rapidly ageing population, low fertility rate and large-scale rural-to-urban migration. The World Health Organisation shows China has one of the fastest growing ageing populations in the world, with an aged population expected to increase to 28% by 2040. China’s fertility rate has remained below 1.9 since the 1980s one-child policy. These demographic characteristics mean serious challenges in care arrangements for Chinese families and the state.
In addition, China has witnessed unprecedented urbanisation and modernisation since its opening-up policies in the 1980s, resulting in a divided rural-urban welfare system and hierarchical social rights. In 2023, more than 290 million people moved to cities temporarily without equal access to urban
local welfare benefits. The dual rural-urban system has resulted in care deficit and difficulties in migrant families.
The symposium will provide critical insights into institutional and familial approaches of dealing
with care challenges in China. Wenjing Jin’s paper focuses on transformation of China’s LTC
policies under the framework of policy diffusion. Her findings suggest a three-stage diffusion
process in China’s LTC policies. Sha Li’s paper examines the one-child generation’s expectations about eldercare provision and possible tensions between work and eldercare support. It emphasises gaps in care provision and offers recommendations for tackling eldercare. Jiaxin Liu’s paper explores the arrangement and negotiation of intergenerational support under changes in family structure and new public pension schemes. The findings demonstrate both older people’s individual agency and familial agency, with family an essential socio-economic actor in eldercare. Yingzi Shen’s paper focuses on intergenerational negotiation of childcare practices when three generations are incorporated in rural-to-urban migration. It identifies three patterns of migrant grandparents’ roles in childcare provision and explores intergenerational tensions and strategies of coping with these tensions.
Papers:
Paper 1: Diffusion of Long-term Care Policies in China: qualitative research based on policy texts - Dr. Wenjing Jin, Nanjing University of Science and Technology, China.
Paper 2: Who Will Look After Our Older People in China in the Future? - Dr. Sha Li, University of Bath, UK
Paper 3: Two levels of agency: the negotiation of intergenerational support in Chinese families - Dr. Jiaxin Liu, University of York, UK
Paper 4: Intergenerational cooperation on childcare in rural-to-urban migrant families in southern China - Yingzi Shen, University of Sheffield, UK
Discussant(s):
Prof Sue Yeandle, University of Sheffield, UK.
Prof Kate Hambin, University of Sheffield, UK
Catherine Needham, University of Birmingham
Anette Fagertun, University of Western Norway
Emily Burn, University of Birmingham
Long-term care systems are in crisis in many countries, due to common issues such as population ageing and workforce shortages. This is evident in many countries despite different welfare histories and care regimes – for example in Nordic countries (Hansen and Dahl, 2021) and in the UK (Needham and Hall, 2023). This symposium will explore the care crisis and routes out of it.
In her paper Dahl explores the care crisis in a social-democratic welfare state and how it differs from the crisis experienced in liberal and continental European welfare regimes. Dahl outlines Danish policy about the recruitment of care workers and care professionals from the Global South and other possible routes to reduce the care crisis.
Jacobsen et al’s paper looks at the concept of innovation as a policy solution for welfare state crisis. The paper includes a discussion of potential consequences of the present Norwegian discourse on innovation, including attending to a seemingly “technologification” of care and care planning.
Ramsøy et als’s paper explores innovation within Norway’s municipal home care services. While substantial changes to work-organization, burden-sharing with relatives, implementation of welfare technology, and synergies with the third sector were all planned as part of the project, the extent of their implementation was largely curtailed by economic turmoil.
In their paper, Burn and Needham, look at health and care integration in the UK as a route out of crisis through potentially saving money and providing joined-up care. In particular they focus on institutional layering, and the problems created when innovative structures are incoherently layered on top of reforms from previous eras.
The symposium is particularly oriented to two of the conference themes:
Papers:
Hanne Marlene Dahl, The Care crisis in the Nordics: Characteristics, Consequences and some policy options.
Frode F. Jacobsen, Laila Nordstrand Berg, Anette Fagertun, Ingrid Jerve Ramsøy, The travel of a concept: Innovation as a panacea for the Norwegian public sector
Ingrid Jerve Ramsøy, Anette Fagertun, and Frode Fadnes Jacobsen, Cost-saving as innovation? Betterment in municipal home-care services in Norway.
Emily Burn and Catherine Needham, Integration of health and care as a route out of the care crisis: freeing up innovation or silting up the system?
Discussant: Kate Hamblin, University of Sheffield
Ebba Högström, School of Architecture, Umeå University
Katarina Andersson, Department of Social Work, Umeå University
Collaboration between municipal sectors is of vital importance in caring and planning for older people. In Sweden, collaboration between social services eldercare and urban planning is stipulated in the Social Services Act from 1982. The theme of this symposia elaborates on dimensions of social care and urban planning in times of increasing diversity amongst older people and ageing-in-place and active ageing ideologies. Influence and independence are core national values and part of the social rights-discourse to claim one’s rights. Arranging for good quality care and good living conditions is of public interest and a prerequisite for ageing societies characterized by inclusion and equal social rights. The WHO Age-Friendly Cities and Communities network raises questions of for whom living environments are planned for.
How would an age-friendly built environment perform to justify its name, specifically if with focus on social infrastructure? (EH, DMV) How is equal access to care secured in rural areas? Ageing-in-place may be challenging in geographically secluded areas (AN). Other topics raises perspectives of what ageing is represented to be from professionals (KA) and how could senior citizens take a more active part in future planning and eldercare as co-researchers (MSJ). This symposium also accounts for discourse and practice of planning and eldercare provision for older people and what social rights that might be at stake in Sweden’s municipal eldercare and planning regime (TR). Taken together, the symposium will contribute with discussions of care and living environments for older people relating to the central themes of the conference.
Papers:
Ebba Högström, (EH) and Daniel Movilla Vega (DMV) School of Architecture, Umeå University: Collaboration and innovation in eldercare housing in the light of visions.
Amanda Nyberg, (AN) Department of Social Work, Umeå University: Care, planning, and ageing-in-place in rural areas.
Tirtha Rasaili, (TR) Department of Spatial Planning, BTH: Mapping the discourses around older people and eldercare in Swedens’ municipal comprehensive plans: perspectives, implications and challenges.
Maria Sjölund (MSJ) and Katarina Andersson, (KA) Department of Social Work, Umeå University: Age-friendliness for whom? Experienced senior-citizens as co-researchers: accounting for equal social care, sustainable living arrangements and social representations of ageing.
Discussants:
Virve Repo, Faculty of Social Sciences, Tampere University
Karen Christensen, Department of People and Technology, Roskilde University
Pat Armstrong, York University, Toronto
Framed around the right to access quality care and provide quality work, this symposium presented by an international team of researchers explores strategies used in Canada, Norway and Sweden to address the crisis in the long-term care labour force. The papers are based on an open-access book in press, supplemented by key informant interviews - currently underway - with people from government, unions and employer organizations. The team has identified five kinds of strategies used to varying degrees in the three countries; reduce, reorganize, replace, recruit and retain. Arguing that the conditions of work are the conditions of care and that retention must be a core concern, the papers analyse the extent to which each strategy contributes to the right to care. The conclusion, which we propose as an alternative to a discussant, proposes ways to rethink approaches to the labour force crisis in long-term care approaches that make gender a critical concern.
Papers:
Reduce- Gudmund Ågotnes, Norway
Reorganize-Susan Braedley, Canada
Replace-Rebecka Strandell, Sweden
Recruit- Marta Szebehely, Sweden Retain- Jacqueline A Choiniere, Canada
Discussants:
Symposium Chair and replacing the discussant Pat Armstrong
Elizabeth Hanson, Linnaeus University, Swedish Family Care Competence Centre
We address the Conference dimension on formal and informal long-term care (LTC) work within the context of the WELL CARE project. Various individual, social and structural factors have been identified that positively or negatively affect the mental well-being and resilience of LTC workers and informal carers. However, both groups have been mainly studied and addressed separately. WELL CARE treats the mental well-being of LTC workers and informal carers as interconnected. We analyse care partnerships from a multi-level approach, examining broader organisational and societal contexts that may significantly influence the dynamics of relationships. The project is conducted within five EU Member States, representing different welfare regimes, namely Germany, Italy, the Netherlands, Slovenia and Sweden.
Papers:
Paper 1 (Elizabeth Hanson) provides the contextual backdrop for the symposium by giving the rationale for and an overview of the 48-month EU Horizon Europe funded WELL CARE project.
Paper 2 (Marco Socci) presents systematic review findings of scientific and grey literature of good practices of innovative solutions supporting LTC workers’ and informal carers’ resilience and mental well-being, including practices that may foster care partnerships. The “state of the art” in the field will be discussed, including existing knowledge gaps and suggested ways forward.
Paper 3 (Ludo Glimmerveen) highlights a draft scientific paper that conceptualises care partnerships within the project. Also, a lay summary version which forms part of a living Guide designed to help consortium partners and stakeholders to tailor, implement and evaluate good practices targeted at strengthening the mental well- being of both LTC workers and informal carers.
Paper 4 (Lennart Magnusson, Elin-Sofie Forsgärde) features Blended Learning Networks (BLNs) in the five countries for promoting the continuous involvement of LTC workers, informal carers and multi-stakeholders in the project. This includes cross- country findings from national BLN sessions in which care partnerships within formal and informal LTC were discussed.
Discussants:
Professor Shereen Hussein, London School of Hygiene and Tropical Medicine, UK, external Ethics and Advisory Board member, WELL CARE project (confirmed).
Tadas Leončikas, Head of Unit, Employment, Eurofound, external Ethics and Advisory Board member, WELL CARE project (confirmed that either Tadas or project leader for one of Eurofound’s ongoing care provision projects will act as a discussant).
Martina Smith, Department of Education, University of Sheffield
Francesca Ribenfors, Department of Social Care and Social Work, Manchester Metropolitan University
This symposium brings together four projects that explore the lives of people with learning disabilities and their family carers in the contexts of health and social care research. Our approach to understanding access to support for people with learning disabilities is guided by a social model of learning disability which argues for a transformative shift away from solely individualised responses and ‘solutions’ to the issues that people with learning disabilities and their families face. We argue that we need to understand the impact of policies and service systems to build better support for people with learning disabilities and their families. Historically, people with learning disabilities have not been given meaningful roles in research about improving their lives and have been excluded from decision making within the health and care systems and services that construct their lives. In contrast, our approach is a collaborative one, drawing on the principles of participatory action research (PAR), which place the perspectives and knowledge of marginalised communities at the centre of research design and practice. Throughout the symposium, we will reflect on working in partnership in this way, and argue for the importance of user-led research. Each project exposes the challenges and discrimination people with learning disabilities face and their family carers face in the context of health and social care. At the same time, each project reveals moments of resistance and possibilities for transformation in care. We conclude with a shared commitment to transforming health and social care policy and practice to enable people with learning disabilities and their family carers to lead flourishing lives.
Papers:
Paper 1: Dr Francesca Ribenfors, Manchester Metropolitan University, UK
Paper 2: Dr Martina Smith, University of Sheffield, UK
Paper 3: Dr Harriet Cameron, University of Sheffield, UK and Professor Katherine Runswick-Cole, University of Sheffield, UK.
Paper 4: Charlie Grosset, University of Sheffield, UK
Discussants:
Dr Martina Smith, Department of Education, University of Sheffield, United Kingdom
Dr Francesca Ribenfors, Department of Social Care and Social Work, Manchester
Marjolein Broese van Groenou, department of Sociology, Faculty of Social Sciences, Vrije Universiteit, Amsterdam, the Netherlands
The increased demand for long-term care (LTC) and the drastic reforms of the LTC systems in western societies create uncertainty among families. It raises the question whether and how families can provide appropriate LTC for their older relatives and maintain wellbeing of the care recipient, the partner and their adult children. One solution is to share the care in a care network in which partner and children cooperate with publicly and privately paid caregivers. The Dutch FAMCARE project aims to add more insight in how families organize care and how this impacts on their level of wellbeing. Our work shows that care networks are associated with wellbeing of the care recipient. This symposium adds 1) the perspective of the caregiver, and
2) the robustness of the theoretical models over time. Data are derived from the Longitudinal Aging Study Amsterdam (1992-2022) and the two ancillary studies on Family Caregiving in 2002 and 2023. Project leader Marjolein Broese van Groenou will first present a short overview of the FAMCARE project. In the second contribution of the symposium Silvia Klokgieters presents how loneliness and care sufficiency impact the association between care network types and wellbeing of the care recipient in different LTC contexts (1992-2002-2012-2022). Jens Abbing takes a family perspective and shows the interdependence amongst siblings in their considerations to provide care to their parent, comparing findings in 2002 with 2023. In the fourth contribution Joukje Swinkels examines how sharing the care adds to the wellbeing of adult children in the year 2002 and in 2023. Discussion focuses on the empirical variation over historic time and how decreasing generosity of publicly provided care and increasing expectations regarding informal care in the past decades may have impacted our findings.
Papers:
Marjolein Broese van Groenou (VU), Objectives and design of the FAMCARE project (2023-2025) on care networks and wellbeing in families of older adults in the Netherlands
Silvia Klokgieters (VU), How are care networks associated with wellbeing of older care recipients – a comparison over historic time in the Netherlands
Jens Abbing (VU) Sibling influence on adult children’s caregiving to older parents in different time periods in the Netherlands
Joukje Swinkels (VU) Sharing the care: how help from formal and informal caregivers impacts on caregiver’s burden within families in 2001 and in 2023
Discussants:
Tine Rostgard, Roskilde University, Stockholm University
Po-Han Lee, Institute of Health Policy and Management, National Taiwan University
This symposium critically interrogates the potential, challenges, and limitations of applying a human rights-based approach to care policies and practices. As a latecomer democracy and a welfare state, Taiwan’s care policies, examined against international human rights standards, show diverse, sometimes contradictory, practices across areas and populations.
In “Late Initiation of Prenatal Care in Taiwan: Why Are Rural Residents Behind?”, Ching-Ching Lin and Tung-Hsien Wu analyse urban-rural disparities in prenatal care and identify factors (lower socio-demographics, higher behavioural risks, and lower specialist availability) as major causes for rural women, revealing the gap in universal health coverage.
In “The Ethics of Healthy Ageing-Centric Long-Term Care Systems: Using Taiwan as
an Illustrative Case”, Ming-Jui Yeh and Yu-Chun Hsieh explore the ethical
foundations of healthy ageing in long-term care systems, addressing utilitarianism, agency, self-reliance, and self-restraint, while considering objections related to intergenerational injustice, ageism, and excessive individual responsibility.
In “Seeking the Right Ways of Care: Research on Tuberculosis and its Control in
Taiwan”, Chen-I Kuan investigates tuberculosis patients and their families’ experiences, highlighting their underrepresentation in developed nations. She employs the concept of “biocitizenship” to critique health governance’s neglect and its impact on equitable care.
In “Evidence-Making Harm Reduction: Chemsex Healthcare and Community Service in Taiwan”, Poyao Huang considers tensions between community-focused chemsex care and medical science-informed harm reduction. His ethnography reveals inconsistencies in care practices driven by differing epistemologies despite their alignment with human rights norms.
The symposium reflects discrepancies between diversified yet inconsistent human rights-based, person-centred approaches in care policy design and implementation across regimes.
Papers:
Ching-Ching Claire Lin & Tung-Hsien Wu: Late Initiation of Prenatal Care in Taiwan: Why Are Rural Residents Behind?
Ming-Jui Yeh, Yu-Chun Hsieh & Chong-Min Su: The Ethics of Healthy Ageing-Centric Long-Term Care Systems: Using Taiwan as An Illustrative Case.
Chen-I Kuan: Seeking the Right Ways of Care: Research on Tuberculosis and its Control in Taiwan.
Poyao Huang: Evidence-Making Harm Reduction: Chemsex Healthcare and Community Service in Taiwan.
Discussants:
Emily Nicholls, Senior Research Fellow, Institute for Global Health, University College London
Hildegard Theobald, Professor, Department of Organizational Gerontology, University of Vechta