Thematic Panel 12: Transforming what? Unpaid carers and family care of children and adults in systems in transition

Agnes Turnpenny, TÁRKI and University of Kent
Gábor Petri, TÁRKI

Although the institutionalisation of children and adults with intellectual and developmental disabilities has received considerable attention in policy and research across the world, the majority of people with intellectual disabilities live with their families in the community, often with little or no formal support and experiencing high levels of social exclusion and deprivation. This panel aims to bring together empirical and policy research that explores how care practices and policies have changed across historical time and future directions. We welcome analytical and descriptive papers that address any of the following topics from a historical or longitudinal/life-course perspective:

– How policies supporting family caregiving have changed over time?

– What are the current policies supporting family caregiving and unpaid carers for people with intellectual and developmental disabilities? What are the implications of these for their socio-economic status at different stages of the life-course?

– How do family carers mobilise formal and informal resources to support the person with intellectual and developmental disabilities across the life course? What are the lived experiences of unpaid family caregiving? How has this changed over time?

We welcome papers from any region or context; however, we are particularly interested in submissions that focus on systems in transition, the ‘former communist bloc countries’ in Eastern Europe and the Global South, as well as comparative research.

Thematic Panel 11: Family Foster vs Institutional Care: The Achilles Heel of Out-of-Home Care for Children?

Teresa Martín García, Spanish National Research Council (CSIC)

An adverse childhood often results in children being placed in state custody, and these children are generally named as children in out-of-home care. Residential care is typically known as a group home or institutional care in which professional caregivers are responsible for the day-to- day care and well-being of these children. In contrast, family foster care encompasses figures of parents in private families who are entrusted with the care of these children (Li, Chng & Chu 2019). One or another care choice will permeate, in different forms and meanings, the entire life course of these children in out-of-home care. In general, foster care is found to benefit some children and be more beneficial for children than institutional care. In fact, it is a well-stylized fact that foster care is a crucial intervention to reduce the adverse effects following early deprivation and that children placed in family foster care show better-off later life behavioral and psychosocial outcomes as compared to those in residential homes.

While there is abundant social care and care policy research focusing on early childhood education and childcare, we know very little about children in out-of-home care. For instance, how practice and policy concerning substitute care for children have changed across historical time? How can they be foreseen in the future? We may be seeing evidence for a transition from systems being clearly dominated by residential care to others almost exclusively or heavily reliant on family placement (Ireland). Yet, the majority of the countries are in development and some even take a step back: in Spain, institutionalized children overcome those entering foster care since 2018.

Linked with the Conference theme (time and temporality), the aim of this panel is to critically analyze state custody in varying societal contexts and change across time with respect to the potentially (un)equal outcomes for children. We encourage contributions from around the world that investigate care practice and policy for children in out-of-home care, a question that has received scarce attention in care regimes analyses. Which placement type best serves a child as well as who is best suited to take care of a child? We encourage contributions that identify which aspects of residential care carry benefits and which carry risks. Special attention will also be paid to the associations between placement and child outcomes, which can vary as a function of the timing and duration of placement(s) and movements between them. We appreciate papers addressing care-related risks, policies and intervention over the life course to account for the accumulation of (dis)advantages and the specific needs of children in substitute care. Studies that compare short vs. medium and long-term outcomes for children who live in family foster and residential care settings are very welcome. So are those comparing their opportunities and outcomes to family-reared children.

Thematic Panel 10: Care Work in the Household under Time Pressure: Coping Strategies and Precarious Time Frames?

Tanja Carstensen and Almut Peukert, University of Hamburg

Conditions for care work at home – the everyday formal, semi-formal and informal practices by which support is provided within the household for children, elderly, partners, and oneself in order to maintaining livelihood – have changed fundamentally in recent years. Reasons among others are increased women’s employment rates, deliminiation of ‘paid work’ and  ‘life’, work intensification, higher mobility, new gender arrangements, and the higher need to elderly care. These transformations have a clear temporal dimension, they are connected with the organization and perception of time within families closely: Time pressure has become a key issue in the everyday life of balancing between paid work and the demands caused by childcare, elder care, care for partners and oneself. In the proposed session, we seek to analyze the question how time for care around and within the home is negotiated within different (gendered) familial arrangements and invite contributions addressing this question from intersectional perspectives, different levels (micro, meso, macro), different stages of life (childcare, care for disabled, elder care) as well as different strategies and their effects (politics, organizational or individual level). This may include, for example, the analysis of workplace arrangements, digital offers (platforms, apps), policy developments (e.g. care policies, social investment), as well as familial negotiations and strategies from intersectional perspectives connected to care provision within domestic settings. Potential questions are: (How) is the problem of time pressure framed by different actors? Who is addressed, who is excluded? What kind of transformations can be observed? Which strategies, measures, practices can be identified? What is their time frame? How is time pressure managed, which strategies are chosen and how are they legitimized? Which viable and organizational strategies offer opportunities and are used to cope with the time pressure?

Thematic Panel 9: Long-term care in life course perspective: novel theoretical and empirical findings 

Andrej Srakar and Maša Filipovič Hrast, University of Ljubljana

The session builds on a theoretical premise that different early life experiences produce different family, health and economic outcomes in older age. One of the perspectives of observing and analysing the various aspects of lives of older persons is the life course perspective that interprets the level of activity in later life in view of the individual’s lifestyle and activities during earlier life (Elder, 1994; Settersten, 2003; Elder, Johnson and Crosnoe, 2004; Victor, 2013). Apart from differences in the lives of individuals, the social context – unique historical events and periods of social changes within which an individual ages strongly shape the course of ageing and older age (Danneferand and Settersten Jr., 2010; Settersten and Gannon, 2005). Differences in individual well-being accumulate over time, further intensifying in later life (Di Prete and Eirich, 2006).

This session focuses on life course approach to understanding care arrangements and the decisions taken by family members to provide care to older people. We invite papers that advance our understanding of the life course, with specific transitions in life, cumulative processes and how life courses within family intertwine and affect decision for care and specific care arrangements. The focus is on quantitative approaches, in particular using SHARE data and its retrospective panel perspective (Brugiavini et al., 2013; 2019), but we will also accept qualitative oriented papers. We welcome innovative approaches to different topics, novel methodological solutions (say, using stochastic processes to study year transitions in retrospective panels; or innovative causality perspectives) but also broad and comprehensive theoretical, historical and overview papers.

Thematic Panel 8: Imagining an Alternative Future: Collaborative Housing as an Option for Aging and Caring

María Offenhenden, Rovira i Virgili University
Nina Navajas-Pertegás, University of Valencia

Against the backdrop of the progressive aging of society, changing family patterns and gender roles, and the resulting care deficit, a plethora of community-centered housing alternatives are emerging as an option for a new generation of seniors that express different ideas and demands on how to age. They reject passivity and solitude associated to institutional and home-care settings, and pursue aging in a community model based on active participation and citizenship.
The values of solidarity and mutual aid are usually at the core of these initiatives, providing new elements for the social organization of care, currently marked by deep social and gender inequalities in the provision and access to care. The importance given to personal autonomy, participatory management, and/or collective decision-making about the organization and use of time and space in everyday life are all elements that enable the configuration of alternative settings for aging and caring. These factors challenge the domestic/institutional and private/public divide in care arrangements and result in new ways of interaction amongst the family, the state, the market, and civil society in care provision for the elderly, broadening the possibilities of aging and caring in alternative ways.
The aim of the panel is to extend social research debates about community care, focusing on the needs and desires of older people and how do they appropriate, perceive and shape care. In order to move in this direction, we welcome theoretical and empirical papers addressing the experiences of seniors forming and/or living in the myriad of community-centered housing projects (communal housing, co-housing, collaborative housing, collective housing, etc.), taking into account its multiple modalities (self-managed, co-managed with private or public partners, etc.; senior, multigenerational or intergenerational), in different national contexts and diverse care provision systems. We intend to discuss the potentialities, tensions and contradictions involved in these alternative housing models for older people in regards to universalizing access to care, the redistribution of resources and the curbing of social and gender inequalities, highlighting the dis/continuities with the aging-in-place and institutional care models. We will also consider papers analyzing the impact of the Covid-19 sanitary crisis in these ventures.

Thematic Panel 7: Inequalities and care needs  

Lina Van Aerschot and Teppo Kröger, University of Jyväskylä
Nicola Brimblecombe, London School of Economics and Political Science

Older and disabled people are, in the main, expected to live at home with the help of their families and other informal carers. However, also services and personal assistance are needed. These may be either publicly provided or privately purchased, depending on the national care policies, social policy systems and individual socio-economic resources. The ways in which care and services are organized and allocated may enhance and built equality related to care and assistance –or create inequalities.

Unmet care needs may be related to unavailability of services or informal care, not being aware of or not being able to access services, high prices or other obstacles. Furthermore, care needs may remain unmet when help and assistance is received but they are not extensive enough, the quality is inadequate or they are not provided at the right time. Individual care needs also change over time, sometimes along increasing age and sometimes unexpectedly.

It has been shown, that both socioeconomic background and health status are related to disadvantaged positions regarding care. Unmet care needs have recently also been analyzed using a new concept of care poverty pointing out that it is a societal and political problem.

The institutional settings and temporal development of care systems and care policies are very relevant to this panel as well as the practical level of care arrangements. How are equal rights to care enhanced – or are they? To what extent do policies and service arrangements promote equality? What is the role of informal and unpaid care in decreasing or, on the contrary, creating or maintaining inequality? Have there been changes over time – has inequality increased or decreased –  including during the time of COVID-19 measures and recovery?

This thematic panel calls for presentations dealing with inequalities in care. We welcome especially papers that connect inequalities related to care with wider questions, changes and temporal aspects of social and public policy. The topics may be related to social inequalities among older or disabled people or between different age groups, or to unmet needs, care poverty, vulnerable positions, inadequate care and different mechanisms that lead to a disadvantaged position or terms of having care needs met.

Thematic Panel 6: Professionalizing or de-professionalizing care work embedded in the changing institutional setting of elderly care

Hildegard Theobald, University of Vechta
Hanne Marlene Dahl, Roskilde University

Elderly care is undergoing major, complex transformation with commodification of care, new discourses on active ageing/rehabilitation and new technologies as well as the increasing role of migrants. We want to investigate how these processes and changes affect – and interact with – the idea of professional carers, distinct professional projects and the role of the state. Active ageing might present a possibility for professionalizing/the professionalism of some groups, whereas marketization might pull in the opposite direction i.e. de-professionalizing elderly care. And what about new technologies? Simultaneously the theoretical terrain is changing with new understandings questioning the traditional view of professions and their characteristics by introducing the notion of professionalism (Fournier, 1999; Henriksson/Wrede/Burau, 2006; Evetts, 2011) and the role of various forms of knowledge in elderly care.

In this section we welcome papers on policy developments and their interaction with processes of professionalizing/professionalism and de-professionalizing in one country or in a cross-country comparison as well as more theoretically based papers concerned with elderly care/ the social imagination of the ‘fourth age’. The theme refers to professions/occupations groups that are exclusively geared towards the oldest old and professions/occupations groups that only deal with the oldest old as part of their work. The relevant fields are health- and social services provided in various spheres of society. We especially welcome papers investigating the role of the state in processes of professionalizing and de-professionalizing, state strategies and rationalities, the role of markets and of paid care work within the family context in creating an image of professionalism.

Thematic Panel 5: Conflicts and compromises between temporalities of care work and temporalities of employment 

Annie DUSSUET, Université de Nantes
Francesca Alice VIANELLO, University of Padua

Many studies have shown the specificities and diversity of the temporality of care activities, whatever the type of care may be concerned. The time needed for care is sometimes that of urgency and immediacy. But it is sometimes also a stretched time, without precise limits, supposing “to take one’s time”, it can then be confused with a simple presence. It is also a time of “permanent availability”, forcing the care-giver to react just in time, at the precise moment when the care-receiver needs help. Conversely, employment time has been formatted by industrialisation processes, enclosed within precise limits, appearing to be predictable and measurable. In addition, employment time’s measure is equated with remuneration. These characteristics are opposed to the temporalities of care work. When care emerges from informality and is carried out by paid workers, as employees or self- employed, the time of care work risks to become invisible and care workers to be less paid.

This thematic panel will examine the effects of the confrontation between these different temporalities. Do care temporalities determine employment conditions? How do the temporalities of employment modify care work? What compromises are made? By which actors and through which debates?

The panel will bring together papers presenting different disciplinary approaches exploring some of these questions in different national, economic, social, institutional and legal contexts and engaging different care publics : young children, disabled or elderly people… They may question, for example, the differences between institutional and individual temporalities, the way through which different actors make their own approaches to temporalities, the struggles engaged on this subject, as well as the way in which compromises are made. What are the costs of these compromises, and at the expenses of whom are they?

Thematic Panel 4: Transforming Care Policies in Light of Global COVID-19 Pandemic: Different Welfare Regimes, Different Paths?

Alexandra Kaasch and Cansu Erdogan, University of Bielefeld

This session addresses the questions of whether and how different welfare regimes and degrees of familialism affect COVID-19 measures related to long-term care policies. We aim to bring together scholars from comparative welfare state and long-term care research to understand and discuss transformations in care policies in different countries in the context of COVID-19 pandemic. While the global COVID-19 pandemic currently has a serious effect on anybody’s life, it has been particularly hard on vulnerable people under long-term care in care homes. In addition to already existing deep-rooted problems in long-term care, this new infectious disease has already caused many elderly people losing their lives in care homes – partly caused by staff shortages, inadequate safety measures and infection prevention.

Countries responded with different sorts of measures to this ever-growing problem. In this session, we ask whether these policy responses are path-dependent and how related measures can be understood with reference to welfare state regime types. We also would like to go beyond the three worlds of welfare capitalism and discuss papers from different parts of the world. In this way, we aim to have a broader understanding of the patterns of transforming care policies in times of COVID-19 pandemic from a comparative perspective.

Thematic Panel 3: Time in disability policies and in support for disabled people in different care regimes

Yueh-Ching Chou, National Yang-Ming University
Teppo Kröger, University of Jyväskylä

This thematic panel focuses on the development of disability policies and the role of time in it. Last 50 years have seen huge changes concerning the inclusion of disabled people in society as equal citizens: in the 1960s the North American independent living movement and in the 1970s the social model of disability in the UK both led to new global perspectives of disability (e.g., ICF of WHO and UNCRPD) and social care reforms, especially to personal assistance and personalisation of social care that have become the mainstream of formal support or integrated with homecare in some European countries in the 1990s and in some Pacific and Asian countries in the 2000s. On the other hand, however, still after a half of a century of independent living movement, limited public resources restrict the realisation of these policy changes in many countries. Even in a welfare state like Sweden, provisions of personal assistance are currently being cut down. It has thus become clear that the development of disability policies does not necessarily mean continuous progress. Backlashes are also possible and actually taking place, leading disabled people to lose their hard-won independence.

Temporality and change are a key feature of disability policies. What can we learn from the debates on disability and social care policies and the impacts of these policies on disabled people in different welfare states when we focus our look on the meaning of time? To what extent and how are disabled people supported by different care and disability policies and care work and personal assistance, including both formal and informal support systems and migrant care workers, and what are their impacts on the lives of disabled people and formal/informal carers/assistants? There is now also a need to discuss the impact of COVID-19 on disabled people, comparing it with the impact on non-disabled people. What does the pandemic as a sudden rupture in time reveal of disability policies? And what can we learn from disabled people’s experiential knowledge who in some societies have faced restrictions and isolation not just during the pandemic but during their entire life course?

This thematic panel aims at contributing to the above issues and questions from the perspectives of global policy, equality, and critical disability studies addressing the impact of time in social care policies and services on disabled people and related groups (e.g. family/friends, formal care workers, migrant care workers).