This doctoral dissertation proposal is comprised of three separate chapters, all of which uses the nationally representative uniform survey Health and Retirement Survey (HRS) to examine the relationship between health, insurance, health care and health outcomes. Below, the brief introduction for each section is provided:  Chapter I: Medicare Part D and Patients' Well-being  Chapter II: Parent's Health Insurance and Informal Care  Chapter III: Job Insecurity and Health (with Dr. Ayyagari) In chapter I, I explore how Medicare Part D (MD) affects the well-being of the severely sick patients both in the short- and in the long- term. I employ difference-in-difference (DD) alongside the instrumental variable (IV) model. The estimated results imply MD significantly improves mental health and increases regular drug utilization for the elderly. However, it neither systematically improves out-of-pocket payment (OOP) nor improves mortality across all waves. This suggests that MD provides an efficient mechanism to improve mental health and drug utilization, but might not necessarily enhance survival rate and financial burden for vulnerable patients. Chapter II investigates the relationship between informal care provided by the children and the take-up of health insurance by the near-elderly and elderly parents, and how the correlation is influenced by parent’s Activities of Daily Living (ADLs) and Instrumental Activities of vii Daily Living (IADLs). The results indicate that when the endogeneity is controlled for, in-formal care systematically crowds out the take-up of private long-term care (LTC) insurance whereas “crowds in” the take-up of the total plan including supplement insurance plans (TSP). Nevertheless, the degree of both crowding-out and “crowding-in” effect is reduced when the severity of ADLs/IADLs disability level grows. Our study reflects (a) the strong demand for TSP and more additional health coverage within household budget line (b) and the potential gap between healthcare demands by the parents and the informal care provided by the children and the potential gap between the healthcare demands by the parents and the formal care covered by the insurance. Our estimates are robust to alternative measures of informal care. The final chapter III examines the causal effect of subjective job insecurity on health, using pooled ordinary least squares (OLS), fixed-effects (FE) and instrumental variable (IV) specifications. The estimate implies that the negative impact of job insecurity is more pronounced for certain outcomes such as mental health and the emergence of new health conditions. Job insecurity provides a powerful prediction on subsequent job displacement and real income loss. Sub-population such as low-employability/better-educated individuals or males responds more to job insecurity than their counterparts.

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Introduction/Aims Duchenne and Becker muscular dystrophies (DBMD) are X-linked neuromuscular disorders characterized by progressive muscle weakness, leading to decreased mobility and multisystem complications. We estimate productivity costs attributable to time spent by a parent caring for a male child under the age of 18 y with DBMD, with particular focus on female caregivers of boys with Duchenne muscular dystrophy (DMD) who have already lost ambulation. Methods Primary caregivers of males with DBMD in the Muscular Dystrophy Surveillance and Research Tracking Network (MD STARnet) were surveyed during 2011–2012 on family quality of life measures, including labor market outcomes. Of 211 respondents, 96 female caregivers of boys with DBMD were matched on state, year of survey, respondent's age, child's age, and number of minor children with controls constructed from Current Population Survey extracts. Regression analysis was used to estimate labor market outcomes and productivity costs. Results Caregivers of boys with DBMD worked 296 h less per year on average than caregivers of unaffected children, translating to a $8816 earnings loss in 2020 U.S. dollars. Caregivers of boys with DMD with ≥4 y of ambulation loss had a predicted loss in annualized earnings of $23,995, whereas caregivers of boys with DBMD of the same ages who remained ambulatory had no loss of earnings. Discussion Female caregivers of non-ambulatory boys with DMD face additional household budget constraints through income loss. Failure to include informal care costs in economic studies could understate the societal cost-effectiveness of strategies for managing DMD that might prolong ambulation.

<p><strong>ABSTRACT</strong></p> <p>It is estimated that twenty percent of the Canadian population experiences a serious mental illness at some point in their lifetime. A portion of those that do so will be parents. Research indicates that in some circumstances, when a parent with a serious mental illness needs support that they are not getting from other adults or the formal mental health care system, the caregiving responsibilities can fall to their children. Sometimes called “young carers” in literature developed in the U.K. and elsewhere, there has been little attention in Canada to this population or the implications of the term “young carers”. Through a critical feminist lens, a small qualitative study was undertaken to explore the lived experiences of adults looking back on having been “young carers”, a perspective seldom taken in the literature.</p> <p>The four study participants had all cared for their mothers in households with extended social networks that included fathers and siblings- an interesting counterpoint to the “young carer” literature, which has centered on isolated single parents with children. Participants described how they found themselves in caring roles, what their caring consisted of, and why they continued to care despite other options being available. The study reveals the intricate social pressures that the participants faced, and suggests that becoming a carer may be more complex than past studies have indicated. I examined participants’ stories with an eye to the structural forces that shaped their pathways as carers and their reflections on those pathways. The discussion focuses on what the participants’ experiences can tell us about the contemporary neoliberal political climate: how its emphases on individualism, independence and smaller government, contribute to the depletion of public mental health services and a troubling focus on sustaining “young carers” rather than questioning their positioning.</p> / Master of Social Work (MSW)

A variety of individual and geographic factors influence the mix of formal and informal services utilized by older adults and their families along the continuum of care. This study focuses on a specific rural population in the United States - Central and South Central Appalachia, which experiences the triple jeopardy of vulnerable people (older adults) in vulnerable places (rural Appalachia), with cultural views and beliefs that may negatively impact the care they receive. Using Andersen’s behavioral model of service utilization, Soldo’s supplementation model of care, and Bronfenbrenner’s ecological theory as the theoretical frameworks, data from the Older Families in Rural Communities: Personal and Social Influences on Service Use project and the United States 2000 Census were used to examine the utilization of informal and formal care services and nursing home placement risk in a rural Appalachian population. The main goals of this research were to (a) examine the relationships among individual and geographic characteristics and determine how those relationships affect the utilization of informal-formal care-mix, and (b) determine how the informal-formal care-mix is associated with nursing home placement risk in older adults living in rural southwest Virginia. Two separate analyses were completed in order to address the research objectives. First, a multinomial regression model, including both individual and geographic data, was used to predict care-mix. Second, after calculating the outcome variable “nursing home placement risk” via a derived logistic regression equation, a log-linear analysis with a 3×4 contingency table was computed in order to understand the association between care-mix and nursing home placement risk. Results indicate that disparities in sex and poverty level in an area that already suffers from healthcare disparities significantly affect the type of care an older adult receives. When formal care was utilized, it was more often added to existing informal care systems, supplementing them, rather than replacing them. The type of care-mix individuals received was also associated with nursing home placement risk. Specifically, when informal support was the only source of care, nursing home placement risk was significantly higher than when informal-formal care-mix was received. Research and policy implications for disparity-ridden areas are discussed. / Ph. D.

Yes / Health and care services for patients may improve or harm the wellbeing of their family carers. Formal consideration of these effects (also known as spillovers) in decision-making is advocated, but, to date, little is known about how they occur. This paper presents the first empirical study to determine the mechanisms by which health and care services affect family carers' wellbeing. The study focused on three major health conditions: dementia, stroke, and mental health. Focus groups and interviews were conducted with 49 purposefully sampled care professionals and family carers in the UK between December 2016 and September 2017. Transcripts were coded and analysed thematically, using descriptive accounts and an explanatory account. The analysis generated six over-arching mechanisms by which health and care services affect family carers' wellbeing, through: (i) information (degree to which service delivery informs and trains family carers); (ii) management of care (shifts of responsibility for care between formal and family sectors); (iii) patient outcomes (services changing patient outcomes); (iv) alienation (feelings of alienation or inclusion created by service delivery); (v) compliance (barriers to patients complying and engaging with services); and (vi) timing or location (changes in the timing or location of services). Each mechanism was associated with sub-themes relating to both positive and negative spillovers on the family carers. The six mechanisms can be summarised with the mnemonic ‘IMPACT’. The IMPACT mechanisms may be useful in designing and evaluating services to optimise the wellbeing of carers as well as patients. / Hareth Al-Janabi is funded by a National Institute for Health Research (NIHR) Career Development Fellowship (CDF-2015-08-025) for this research project. Mel Calvert is partially funded by the NIHR Birmingham Biomedical Research Centre and the NIHR Surgical Reconstruction and Microbiology Research Centre at the University Hospitals Birmingham NHS Foundation Trust and the University of Birmingham. This paper presents independent research funded by the National Institute for Health Research (NIHR).

The aim of this thesis was to examine the cost-effectiveness of specific advanced home care and home rehabilitation interventions and to improve economic evaluation methods when applied to advanced home care. This included a comparison of two alternative ways of administering oxygen at home to patients with chronic hypoxaemia, as well as a review of scientific evidence on costs and effects of home rehabilitation after stroke. Also included were studies on prominent methodological issues in advanced home care - the redistribution of care efforts among caregivers and costing of informal care efforts. For patients with chronic hypoxaemia, a randomised, controlled trial showed that mobile liquid oxygen was considerably more costly compared to concentrator treatment. However, the treatment effects showed that liquid oxygen had a better impact on patient quality of life. The literature review revealed that the outcomes and costs of home rehabilitation after stroke are equal to those of alternative treatment strategies. Similar results were obtained in a study comparing hospital-based and home-based stroke rehabilitation, which also showed that there is a considerable redistribution of costs between health care providers and social welfare providers. Studies of patients in advanced home care in the county of Östergötland, Sweden, showed that the cost of informal care constitutes a considerable part of the care effort in all costing approaches used. Also, informal care costs were higher among patients who were men, who were younger, who had their own housing and had a cancer diagnosis. This thesis reveals that advanced home care interventions can differ regarding costs as well as effects, and thus comparisons between alternative home care interventions must also be performed. Further, redistribution effects are important to consider in evaluations. The cost of informal care is substantial in advanced home care. These costs must be included in evaluations with a societal perspective or else the comparisons will be biased.

The present thesis which focuses on the needs of people with dementia and the support of their independent living in the home environment was written within the framework of the PhD study in Longevity at the Faculty of Humanities, Charles University, GAČR project co- researcher and AZV participated in during post gradual studies. Presented research focuses on the needs of home dwelling people with dementia, the needs of their informal carers, the needs and experiences with providing care of patients with dementia in acute hospital care. The text of the thesis is divided into four parts, which are based on texts reviewed and published or prepared for publication. The first three parts present own research aimed at identifying the needs of people with dementia and experiences with caring of them in their home environment and in the hospital environment during acute care. The final part presents the possibilities and services to support their independent life in their own environment.

This thesis concerns the topic of normative solidarity in informal elderly care. The main aim is to find the normative premises of informal elderly care, their specific examples and to prepare a possible way of including normative solidarity into the model of solidarity premises of informal elderly care. The results are based on an analysis of in-depth interviews. Firstly, specific examples of the normative solidarity concepts are presented. Secondly, the possible option of how to include normative solidarity in the model is proposed, including eight main points that are mainly about a potential carer's previous experiences and her/his opinions about care. The quantitative research shall either prove this or show that it was specific to respondents of this particular research only.

In the literature, the experience of ‘care’ and ‘caregiving’ has been well documented and widely researched. Caregivers are recognized as people (family and friends) who provide unpaid substantial care for family members. Over time, research has increased awareness of caregivers as a distinct social group and has also contributed to caregiving being a widely recognized social issue. However, despite this increased awareness and continued concern for caregivers, much of the literature focuses on adult caregivers. As a result, the experiences of other caregiving populations, such as the youth and young adults, continues to be overlooked and underrepresented. Therefore, there is a need to explore and understand the unique experience of this population and how they give meaning to their experiences. Young caregivers (YCs) are children (5-18) and young adults (18-25) who provide substantial (unpaid) care for a family member who has an illness or disability (Stamatopoulos, 2016). Research on this population is scant and there exists many notable gaps in the literature in terms of diversity, age-based differences, programming and best practices for intervention. More specifically, there is a gap in understanding the experiences of young caregivers who are affected by progressive and incurable chronic brain diseases such as Alzheimer’s Disease or a Related Dementia. As such, this dissertation explores the experiences of YACs affected by ADRD, in terms of their personal experiences with ADRD (knowledge, dementia care and care practices), perceptions of their caregiving role and how they navigate the caregiving role. It builds on scholarship on young caregivers to broaden existing knowledge by using a phenomenological approach, known as Interpretive Phenomenological Analysis, to explore their caregiving experiences and the meaning they give to these experiences in-depth (n=12). It also aims to challenge the dominant assumptions about young caregivers by giving voice to this population by situating the young caregivers as the experts in their own lives. Findings indicate that the caregiving experience for YACs is complex, and situated within a larger socio-political context, which impacts the overall experience of care. Overall, the findings contribute to knowledge on the experiences of care among YACs and highlight the need for more inclusive research and practices on addressing caregiving among this group. / Dissertation / Candidate in Philosophy / This dissertation explores the lived experiences of young adult caregivers (YACs) caring for an older adult with Alzheimer’s Disease or a Related Dementia. Research on this group of caregivers is limited, particularly YACs (ages 18-25) who provide substantial (unpaid) caregiving for an older adult affected by Alzheimer’s or a Related Dementia. Therefore, a key aim of this research is to generate awareness and shed light on the nature of caregiving as experienced by this overlooked population of caregivers. As such, this dissertation aims to understand how young caregivers give meaning to, interpret and make sense of their caregiving experience. To understand the caregiving experience of YACs, I conducted interviews with 12 YACs from Canada and the United States and analyzed their perspectives in detail. The findings shed light on the many factors that shape the caregiving experiences. In addition, the findings show that more research is needed to understand the differences amongst young caregivers to better support their needs. In general, the research can contribute to existing knowledge on young adult caregivers, as well as relevant programs and policies.