Yes / Many children caring for ill or disabled family members remain ‘hidden’ and ‘invisible’ in our communities. This study is the first to explore patterns of change, over time and throughout austerity, for children with caregiving roles to better understand how their lives differ from those of their non-caregiving peers. A survey of 2154 children, aged 9–18 years in the general population, and a further 21 children, aged 8–18 years and known to be young carers from the same English unitary authority, was conducted to gain an in-depth understanding of children’s perceptions and experiences of what they do to help at home. This study shows that children with caregiving roles remain a distinctive group who assume more domestic and caring responsibilities than their peers, and who also perform many of these activities more frequently than young caregivers in 2001. Approximately 19% of the respondents in the general population showed signs of being in a caring role, double the percentage identified by the author in 2001, 72% of whom were from Black and Minority Ethnic backgrounds. Indicating over time higher levels of unmet needs among parents and other family members who are ill or disabled, these findings have important implications for professional policy, planning and practice across adult and children’s services.

Appropriate housing for the aging American population is a timely topic of research in both housing and gerontology. Universal design is an innovation in housing design that is gaining interest from both industries. This research examines the effectiveness of universal design features that have been identified by experts in the field of aging, housing, and universal design as important to resident and caregiver participants of the ECHO demonstration housing program. A national survey was conducted that included all available current residents of the HUD ECHO houses and their caregivers. The relationships between age, effectiveness of universal design features, health and dependency were investigated. Quantitative results include some confounding relationships, and plausible explanations. A qualitative analysis, based on on-site and telephone interviews, and tape recordings of those interviews with residents and their caregivers, as well as architectural drawings, observation, and photographs of the ECHO houses provided additional details. The qualitative approach indicated that many of the universal design features recommended by the experts consulted satisfactorily met the needs of residents and/or their caregivers. It also revealed, however that some features were not considered important by residents and caregivers, some were not reported as present (when they were documented by the researcher as present), and at least one HUD-specified universal design feature was not provided by ECHO houses. Another aspect of the qualitative perspective addressed the health of the residents. Health characteristics are presented in the context of their effect on dependency. Phase II dependency task information was compared to that reported in phase I, and improvement and decline was noted. Conclusions, and Implications that elaborate on findings, and future research is recommended for taking this research to the next level. / Ph. D.

Yes / and Health and social care may affect family carers’ health and wellbeing in addition to patients’ lives. It is recommended that such impacts (carer effects) are considered in decision-making. However, the scope of carer effects and range of decisions where carer effects should be considered is uncertain. This study aimed to identify (i) how different categories of healthcare and social care were perceived to impact on family carers and (ii) whether there was consensus about when carer effects should be formally considered in decision-making contexts. Methods: A Delphi study was conducted with 65 UK-based participants with expertise in dementia, mental health, and stroke. Participants considered two broad forms of ‘interventions’ (patient treatment and replacement care) and two broad forms of ‘organisational change’ (staffing and changes in timing/location of care). Participants assessed the likely impacts of health and social care on family carers and whether impacts should be considered in decision-making. The survey was conducted remotely at two time points. Results: Participants predicted widespread impacts from interventions and organisational changes on different domains of family carers’ lives, with ‘emotional health’ the most likely outcome to be affected. Patient treatment and replacement care services (‘interventions’) were associated with positive impacts across all domains. Conversely, timing/location changes and staffing changes (‘organisational changes’) were perceived to have mixed and negative impacts. There was widespread support (80-81%) for considering carer effects in research studies, funding decisions, and patient decision-making. Conclusion: This study highlights a perception that carer effects are widespread and important to consider in economic evaluation and decision-making. It highlights the particular need to measure and value effects on carers’ emotional health and the need to use a societal perspective to avoid cost shifting to family carers when introducing interventions and making organisational changes. / This work was funded by a National Institute for Health Research (NIHR) Career Development Fellowship (CDF-2015-08-025) awarded to HA for this research project.

Thesis advisor: Andrew Beauchamp / Thesis advisor: Peter Gottschalk / This dissertation examines how caregiving for an elderly parent affects an adult child's labor supply and wages. In the first chapter (co-authored with Courtney H. Van Houtven and Norma B. Coe) we identify the relationship between informal care and labor force participation in the United States, both on the intensive and extensive margins, and examine wage effects. We control for time-invariant individual heterogeneity; rule out or control for endogeneity; examine effects for men and women separately; and analyze heterogeneous effects by task and intensity. We find modest decreases--1.4-2.4 percentage points--in the likelihood of working for caregivers providing personal care. Male and female chore caregivers, meanwhile, are more likely to retire. For female care providers who remain working, we find evidence that they decrease work by 3-10 hours per week and face a 2.3-2.6 percent wage penalty. We find little effect of caregiving on working men's hours or wages except for a wage premium for male intensive caregivers. In the second chapter I formulate and estimate a dynamic discrete choice model of elder parent care and work to analyze how caregiving affects a woman's current and future labor force participation and wages. Intertemporal tradeoffs, such as decreased future earning capacity due to a current reduction in labor market work, are central to the decision to provide care. The existing literature, however, overlooks such long-term considerations. I depart from the previous literature by modeling caregiving and work decisions in an explicitly intertemporal framework. The model incorporates dynamic elements such as the health of the elderly parent, human capital accumulation and job offer availability. I estimate the model on a sample of women from the Health and Retirement Study by efficient method of moments. The estimates indicate that intertemporal tradeoffs matter considerably. In particular, women face low probabilities of returning to work or increasing work hours after a caregiving spell. Using the estimates, I simulate several government sponsored elder care policy experiments: a longer unpaid leave than currently available under the Family and Medical Leave Act of 1993; a paid work leave; and a caregiver allowance. The leaves encourage more work among intensive care providers since they guarantee a woman can return to her job, while the caregiver allowance discourages work. A comparison of the welfare gains generated by the policies shows that half the value of the paid leave can be achieved with the unpaid leave, and the caregiver allowance generates gains comparable to the unpaid leave. / Thesis (PhD) — Boston College, 2012. / Submitted to: Boston College. Graduate School of Arts and Sciences. / Discipline: Economics.

The majority of dependent older people rely on informal care to meet their long-term care needs. The activity of care-giving can place informal carers at risk of experiencing financial poverty and welfare loss, including poor health, injuries and time poverty. This thesis argues that states should recognise and treat the informal care of older people as a social risk by providing informal carers and the older people they care for with adequate statutory protection against the risks which they face. A qualitative case study was conducted to analyse the extent to which care policies in England protect informal carers and the older people they care for against care-related risks. A policy simulation technique, the model care relationship matrix, was employed as a data collection and analysis tool. The matrices incorporated thirteen care relationship types and all of the care policy mechanisms in England, including cash benefits, care services, and employment-related support. Government documents and semi-structured interviews with practitioners and managers from a range of public sector and third sector agencies were used to determine the statutory support each care relationship would be entitled to receive. The way in which institutional structures, processes and actors within the policy environment can affect the level of statutory protection provided to care relationships was also analysed. The study’s findings reveal that the English state recognises but does not treat informal care as a social risk. The state’s treatment of informal care-givers and their care-related risks is inconsistent, unpredictable and inadequate. Some informal care-givers have access to inadequate levels of statutory protection, while the risks experienced by other groups of informal carers are left unprotected and privatised. Moreover the policy environment, itself, is revealed to produce risks due to being complex, fragmented, and adversarial in nature. Overall informal carers are found to occupy a marginalised and devalued position in the English care policy system.

In Canada and internationally, increases in Home Care (HC) services for the elderly have been a policy priority in recent decades. HC services include Home Health Care (HHC) and Homemaking/Personal Support (HM). The primary objectives of this study were to explore the interrelationship among publicly funded, privately funded, and informal HC services in terms of potential for substitution, and between publicly funded HHC and HM services; and the determinants of the receipt of each type of HC services. Stabile, Laporte, and Coyte’s family home care decision model (2006) was extended, to develop an understanding of the demand for HHC and HM services separately and to include different household arrangements. The consequential hypotheses were tested in two empirical studies. Individual panel data for those aged 65 and over were derived from 8 biannual waves of the Canadian National Population Health Survey (1994-95 to 2008-09). A Panel Two-Stage Residual Inclusion method was used to estimate the likelihood of the receipt of HC services, adjusting for socio-demographic, health status, disability, dependence on help with Activities of Daily Living (ADLs), and regional characteristics. The results showed that receipt of publicly funded HM is complementary with receipt of publicly funded HHC services after adjusting for functional and health status. Receipt of publicly funded and privately funded HM services did not show an effect on each other. Receipt of publicly funded HM did not affect the receipt of informal HM services. The availability of informal care from a partner or other adult sharing the household reduced the likelihood of publicly funded HM receipt. Age, dependence on help with ADLs, health status and income are determinants of the propensity to receive publicly funded HHC and HM services as well as privately funded and informal HM. Findings in this study suggest that changes in the availability of publicly funded HC services may not greatly affect the provision of informal care in Canada. The complementary effect between publicly funded HHC and HM services and the income effect in the receipt of publicly and privately funded HC services may raise concerns about equitable access to HC services in Canadian jurisdictions.

This thesis presents a retrospective critique of the social and political construction of 'informal care' within community care policy from the period of the late 1970s to the mid 1990s. The thesis considers the question of the degree of 'choice' available to informal carers to say 'no' to caring, or aspects of caring, within the reforms' positioning of informal care as the first line of support for adult dependants. The critique focuses on subjectivity, difference, agency and choice. A theoretical and methodological synthesis is developed between feminist post-structuralism, feminist critiques of mainstream social policy, and feminist theory and research, within which a qualitative in-depth interview study with informal carers is situated. The critique is then expanded through the development of a 'Q' Methodology study with a larger cohort of informal carers. The research identified gendered generational differences between the carers, and a 'burden' of care imposed as an outcome of consecutive governments' attempts to residualise welfare. The older carers' levels of agency and choice were severely curtailed. However, the younger female carers were more able to resist the drive of the community care reforms, their counter discourses being based on a new emergent notion of 'rights'. The direction of community care policy was found to be out of step with how the carers within this study perceived their responsibilities and 'obligations'. The thesis argues that whilst post-modernism may have constrained the capacity of governments and reconstituted our understanding of 'care', it has not done so to the extent that we are no longer prepared to make demands for 'care' from and by the state.

In Canada and internationally, increases in Home Care (HC) services for the elderly have been a policy priority in recent decades. HC services include Home Health Care (HHC) and Homemaking/Personal Support (HM). The primary objectives of this study were to explore the interrelationship among publicly funded, privately funded, and informal HC services in terms of potential for substitution, and between publicly funded HHC and HM services; and the determinants of the receipt of each type of HC services. Stabile, Laporte, and Coyte’s family home care decision model (2006) was extended, to develop an understanding of the demand for HHC and HM services separately and to include different household arrangements. The consequential hypotheses were tested in two empirical studies. Individual panel data for those aged 65 and over were derived from 8 biannual waves of the Canadian National Population Health Survey (1994-95 to 2008-09). A Panel Two-Stage Residual Inclusion method was used to estimate the likelihood of the receipt of HC services, adjusting for socio-demographic, health status, disability, dependence on help with Activities of Daily Living (ADLs), and regional characteristics. The results showed that receipt of publicly funded HM is complementary with receipt of publicly funded HHC services after adjusting for functional and health status. Receipt of publicly funded and privately funded HM services did not show an effect on each other. Receipt of publicly funded HM did not affect the receipt of informal HM services. The availability of informal care from a partner or other adult sharing the household reduced the likelihood of publicly funded HM receipt. Age, dependence on help with ADLs, health status and income are determinants of the propensity to receive publicly funded HHC and HM services as well as privately funded and informal HM. Findings in this study suggest that changes in the availability of publicly funded HC services may not greatly affect the provision of informal care in Canada. The complementary effect between publicly funded HHC and HM services and the income effect in the receipt of publicly and privately funded HC services may raise concerns about equitable access to HC services in Canadian jurisdictions.

In this contribution, we investigate the relationships between paid and unpaid work in the lifeworlds of employed informal carers against the background of the Austrian long-term care regime. We pursue a twofold argument: On the one hand, we emphasize that combining paid and unpaid work currently poses serious difficulties for employed family carers in their everyday lives and impacts their current and future financial and social security. On the other hand, we argue that the relationships between employment and informal care are in fact not well understood by the common concepts of "reconciliation" or "work-life balance". These concepts are not able to explain the complexities of employed carers' lived realities and fail to adequately address the fundamental contradiction in the idea of a "reconciliation" of paid and unpaid work.

京都大学 / 0048 / 新制・課程博士 / 博士(社会健康医学) / 甲第22382号 / 社医博第104号 / 新制||社||医11(附属図書館) / 京都大学大学院医学研究科社会健康医学系専攻 / (主査)教授 川上 浩司, 教授 髙橋 良輔, 教授 中山 健夫 / 学位規則第4条第1項該当 / Doctor of Public Health / Kyoto University / DFAM