This thesis examines current Canadian social policies aimed at ameliorating the position of informal caregivers of terminally ill and elderly care recipients. Using an ethics of care theoretical approach, the thesis critically evaluates federal and provincial income tax regimes aimed at increasing the financial security of caregivers, and also looks at the shortcomings of the Compassionate Care Benefit offered through the federal Employment Insurance Act. The evaluation reveals that the benefit has a very low up-take compared with initial estimates, and offers some explanations for its low use. A review of the caregiver policies in three European countries provide additional background for the final chapter of the thesis, which offers concrete and incremental solutions to the problems with the current social policies in place. The aim of this thesis is not to suggest sweeping reforms, but to offer affordable, practical, and politically feasible solutions that can begin to make a difference in the lives of caregivers.

This thesis examines current Canadian social policies aimed at ameliorating the position of informal caregivers of terminally ill and elderly care recipients. Using an ethics of care theoretical approach, the thesis critically evaluates federal and provincial income tax regimes aimed at increasing the financial security of caregivers, and also looks at the shortcomings of the Compassionate Care Benefit offered through the federal Employment Insurance Act. The evaluation reveals that the benefit has a very low up-take compared with initial estimates, and offers some explanations for its low use. A review of the caregiver policies in three European countries provide additional background for the final chapter of the thesis, which offers concrete and incremental solutions to the problems with the current social policies in place. The aim of this thesis is not to suggest sweeping reforms, but to offer affordable, practical, and politically feasible solutions that can begin to make a difference in the lives of caregivers.

Informal caregiving for aging Canadians plays a vital role in the health care system, and scholars have noted the urgency and primacy of studying this important contribution provided by a relatively invisible cadre of volunteers, family members and friends. Despite the recent attention caregiving has received in the scholarly literature, it is dominated by quantitative research. The purpose of this qualitative inquiry was to explore the lived experiences of female caregivers in terms of their perspectives on caregiving and their own personal health and wellness. A sample of seven female caregivers was obtained using a combination of both purposive and snowball sampling. Through semi-structured interviews participants were asked to describe their experiences as a caregiver. A primary theme “one day at a time” emerged from the data. Within this overarching narrative were three sub-themes: “Intensive care”, “Transitions”, and “Support” found to characterize their caregiving realities including both positive and negative aspects. Capturing a rich understanding of the lived experience of female caregivers, intentionally including and honouring their voices, can inform the design and implementation of health promoting policies, programs, and interventions, as well as identify avenues and approaches to future research. / Graduate

Nursing research has been performed during the last 20-30 years, about the next of kin’s vulnerability. Despite this, the health care system has had difficulties to integrate the next of kin in a way that gives support. The overall aim of the thesis was to describe and further explore the life situation of the next of kin to persons who are long-term ill, disabled, and/or older, and in need of care. Method: Multiple methods were used. Study I had a descriptive design, 44 next of kin of patients with multiple sclerosis were interviewed, latent content analysis was used for the analysis. Study II had a mixed method approach; the descriptive core study was analyzed with directed content analysis. The supplementary study with descriptive, correlative design was analyzed with descriptive and correlative statistics. Forty-four next of kin of patients with multiple sclerosis were interviewed; thereafter 37 of them answered a questionnaire about Quality of Life. Study III had a descriptive, explorative design. Twelve next of kin of older persons were interviewed with repeated informal conversational interviews, analyzed with latent content analysis. Study IV was cross-sectional with a descriptive, correlative design. Eighty-four next of kin of persons who were long-term ill, disabled, and/or older answered two questionnaires about Burden and Quality of Life that were analyzed with descriptive and correlative statistics. Results and Conclusions: Next of kin described a balance/imbalance in their relations to others and a high burden, but in general a good Quality of Life. Some next of kin also experienced chronic sorrow. Significant correlations were found between interpersonal relations and Quality of Life as a whole. Love and obligations were two anchor points on a continuum, describing the next of kin’s relationship to the ill/disabled person. The relationship with the health care personnel was described through cooperation and obligations. Good communication was seen as the key to balance the relationship with others. One possibility to achieve symmetrical communications is to adapt the Partnership Model, as a tool for creating good relationships. Honest and specific communication between the health care personnel, the next of kin, and the care receiver are necessary.

The increasing frequency of disasters in recent years has made clear the importance of preparing for their devastating impacts. The intersection of immigrant status and older age in immigrant older adults subjects them to a high risk for harm in disasters. Thus, ensuring that this population can effectively prepare for disasters is crucial. However, research that focuses on disaster preparedness among immigrant older adults in a Canadian context is limited. We interviewed informal caregivers of immigrant older adults to explore their experiences regarding the disaster preparedness of their care recipients. We aimed to describe caregivers’ knowledge of disaster risk among immigrant older adults, as well as their experiences and perceptions of barriers and facilitators of preparedness among older immigrants. We conducted semi-structured individual interviews with a sample of 10 informal caregivers of older immigrants who reside in Ottawa and Toronto. All interviews were audio-recorded, and interview content was analyzed using inductive thematic analysis. Participants were able to identify the additional risks their older immigrant family members experience, and they took on the responsibility for disaster preparedness and response for the care recipients. However, the following barriers to preparedness efforts were identified: The financial costs of preparing, lack of confidence to prepare due to inadequate information about preparedness measures, communication difficulties among family members, and time constraints. Participants’ contingency plans for caregiving for the older immigrants were largely unspoken, and influenced by cultural norms. Lastly, faith-based organizations were seen by participants as potentially having a significant role in their family members’ disaster preparedness and response; participants were largely unaware of any other relevant community-based supports. We anticipate that our results will provide insight into the barriers and protective factors that older immigrants and their caregivers experience in safeguarding against harm in disasters, and we anticipate the recommendations will inform policies and interventions to support them.

This dissertation addresses the role of welfare state/family care regimes, intersecting social locations and stress process factors in influencing the mental health and subjective well-being of informal caregivers of care recipients with age-related needs or disabilities within a European international context. Empirical analyses were conducted with secondary data from the 2012 and 2016 European Quality of Life Surveys. The study sample included informal caregivers (n=6,007) residing in seven different welfare state/family care regimes, including Denmark, Sweden, France, Germany, Italy, Greece and the United Kingdom. Ordinary least squares and ordered logit regression models revealed that welfare state/family care regime, social location (including both additive and interactive associations among gender, age group, marital status, and income), and stress process factors were independently associated with the mental health and life satisfaction of informal caregivers. Furthermore, there was some evidence to suggest that social location and stress process factors mediate some of the relationships between regime type and self-reported health and well-being and that stress process factors mediate relationships between social location factors and mental health and well-being. Overall, the results provide support for integrating welfare state/family care regime type and intersectionality factors into the SPM. Thus, future research on informal caregivers‘ mental health and well-being ought to incorporate such factors into their empirical analyses. The results also have some policy and practice implications. Residence in social democratic formal (Denmark), semi-formal (Sweden) and conservative formal (France) care regimes was the most beneficial to informal caregivers self-reported mental health. This was also the case for life satisfaction, except that residence in the liberal semi-formal (UK) was more beneficial than in the conservative formal (France) care regime. Mediating social location and stress process factors suggest that UK policy makers should address the greater social location disparities, greater role overload, and lack of coping resources that advantage Danish and Swedish informal caregivers compared to those residing in the UK. Lastly, policy makers from all the European countries assessed in the study should address the poorer mental health status of women and rural informal caregivers, those who experience role overload, secondary stressors, and lack coping resources. They should also address the the lower levels of formal education, more secondary stressors, and lack of coping resources associated with poorer subjective well-being. / Graduate

This paper examines the caring experiences of 7 LGBT older adults in Southwestern Ontario. Up to 2 90-minute interviews were conducted with 7 participants which were then transcribed and analyzed using interpretive phenomenological analysis (IPA). Participants described life histories of discrimination and isolation, as well as contemporary experiences of medical discrimination. As a result, participants were highly skeptical of the formal care system, with only one indicating they would be willing to enter long term care. Analysis was conducted according to four themes that were identified while engaging in the interpretive phenomenological process. The research was influenced by life course theory and cultural scripts: specifically, that the current cohort of LGBT+ older adults is perhaps the first to age openly in their identity and as a result lack cultural scripts as to what they should do as they age. Questions were open-ended and asked participants about their experiences giving or receiving care, life histories of discrimination, and how their care experiences influence their plans for the future. Although no questions were directly asked about the HIV/AIDS epidemic, the legacy of the HIV/AIDS epidemic on contemporary LGBT older adults became a major theme of this paper. Other themes identified include the role that stigma and concerns about autonomy play in their plans for the future, the importance of political advocacy and community caregiving for LGBT older adults, and how LGBT older adults have developed resiliency and the practice of holding loved ones in personhood in order to cope with medical issues and death. / Thesis / Master of Arts (MA) / This paper examines the experiences of LGBT older adults giving and receiving informal care for physical or mental health conditions. It highlights themes of stigma and autonomy, the relationship between community caregiving and political advocacy, the legacy of the HIV/AIDS epidemic, and how LGBT older adults hold each other and the dead in personhood. Seven LGBT older adults from Southern Ontario were interviewed about their experiences with care, and the relationship between social structures and discrimination and their personal experiences with the medical system.

Bakgrund   Demenssjukdomar är en grupp sjukdomar som orsakar att hjärnans celler successivt och irreversibelt förlorar funktion och dör. Detta kallas neurodegeneration. Symtomen för demens varierar mellan de olika typerna av demenssjukdom. Demenssjukdomar kan behandlas till en viss grad, men går inte att bota. Alla med demenssjukdom behöver till slut stöd och hjälp i vardagen. Vissa med demenssjukdom bor i någon form av icke-ordinärt boende, alltså inte i det egna hemmet. På icke-ordinära boenden får den demenssjuke personen hjälp av personal för att klara av vardagen och sin sjukdom, men många bor hemma. Då är det inte sällan anhöriga som står för hjälp och stöd. Syfte Syftet var att beskriva anhörigas erfarenheter av att vårda en person med demenssjukdom i hemmet. Metod Denna litteraturöversikt är icke-systematisk med kvalitativ ansats. Resultatet baserades på tio vetenskapliga artiklar, varav nio med kvalitativ ansats och en med mixad metod. Artiklarna inhämtades från sökning i databasen PubMed. Artiklarna analyserades genom integrerad analys. Resultat Fem teman identifierades i resultatet: Förändrade relationer och en ny framtid, Den nya rollen, Erfarenheter av samhälle och kultur, Konsekvenser för anhörigvårdaren samt Positiva erfarenheter. Resultatet påvisade att anhöriga som vårdar personer med demens i hemmet i hög utsträckning känner sorg och förlust, dels över den demenssjuke personen, dels för relationen de haft och som inte längre är densamme. Det framkom även frustration och en känsla av otillräcklighet i den nya rollen som anhörigvårdare. Slutsats Omvårdnaden och vården som anhöriga bistår sina demenssjuka familjemedlemmar är viktig och ovärderlig för samhället. Dock blir de anhöriga inte sällan påverkade psykiskt, fysiskt och existentiellt av vad det innebär att vara anhörigvårdare. / Background Dementia is a group of diseases that cause brain cells to successively and irreversibly lose function and die. This is called neurodegeneration. The symptoms of dementia differ between the different types of dementia. Dementia can be treated to a certain degree but cannot be cured. All persons with dementia will at some point need support in their everyday lives. Some with dementia live in a residential facility or nursing home, thus not in the ordinary home. In residential facilities or nursing homes, the person with dementia receives help and support from personnel to manage everyday life, yet many live in their own homes. Those who live at home often receive help and support from family and relatives. Aim The aim was to describe the experiences of family caregivers caring for a relative with dementia at home. Method This literature review is non-systematic with a qualitative approach. The result was based on ten research articles, nine of which had qualitative approaches and one was a mixed method study. The articles were retrieved from searches in the database PubMed. The articles were analyzed with an integrated analysis.  Results Five themes were identified in the result: Changed relationships and a new future, The new role, Experiences of society and culture, Consequences for the family caregiver, and Positive experiences. The result showed that family caregivers largely experience grief and loss, partly over the person with dementia, and partly over the relationship they had and that is no longer what it used to be. Frustration and a feeling of inadequateness in their new roles also emerged as a result. Conclusions The care that family caregivers provide their relatives with dementia is important and invaluable for society. Yet the family caregivers often suffer psychological, physical, and existential consequences from what caregiving entails.

Introduction: This research investigated the requirements of an HIT solution that is usable and useful to informal caregivers of cancer patients on home palliative care. Methodology: A needs assessment method was used with an exploratory and a confirmatory stage. Eight semi-structured interviews and two focus groups were used for data collection. Qualitative content analysis was used to analyse caregiver experiences with both inductive and deductive coding. Results/Discussion: Expressed and unexpressed caregiver needs were extracted into four categories, Implementation, Presentation, Information, and Practical Caregiving, and used to create the application requirements. Five user personas were created based on caregiving intensity and the functional level of the patients, a method of tailoring the application content to the different personas was created, and a low-fidelity prototype of the application was designed. Conclusion: The findings of this research can improve the preparedness and coping of informal caregivers of cancer patients on home palliative care.

The Labour Supply of Unpaid Caregivers in Canada, Doctor of Philosophy (PhD), Meredith Lenore Lilly, Department of Health Policy, Management and Evaluation, University of Toronto, 2008. As medical care increasingly shifts from the hospital to the home, responsibility for care has also shifted from the state and paid care, to the family and unpaid care. Unpaid caregivers are family members and friends who provide homecare services to recipients in their place of residence without financial compensation, as a result of their close personal relationships. This research tests the multiple hypotheses that unpaid caregiving has an impact on (1) the probability of labour force participation (LFP); (2) hours of labour force work; and (3) earnings by caregivers in Canada. We analyzed the 1996 and 2002 General Social Surveys, applying multivariate probit, logistic, and OLS regression analyses to four equations: 1) the probability of labour force participation; 2) the hourly wage; 3) weekly hours of labour market work; and 4) the probability of being an unpaid caregiver. Results indicate that unpaid caregiving was negatively associated with labour force participation; however, the impact on hours of labour market work and wages was uncertain. Women and men caregivers were impacted differently: only caregiving men in 1996 had significantly lower wages than non-caregivers, and only women in 1996 worked significantly fewer hours in the labour market. When caregiving was defined broadly, only men in 1996 were significantly less likely to be employed than non-caregivers. Yet when we controlled for caregiving intensity in 2002, both male and female primary caregivers were much less likely to be in the labour force than non-caregivers, while secondary caregivers were no less likely to be employed than non-caregivers. We conclude that when caregiving responsibilities are relatively small, individuals seem able to balance both caregiving with employment. Yet when caregiving commitments become heavy, it becomes increasingly difficult to balance employment with caregiving. We make a number of policy recommendations ranging from improving caregiver access to financial supports, formal care and respite services, particularly for primary caregivers. We also encourage the development of workplace legislation and caregiver friendly workplaces for the majority of caregivers who remain in the labour market.