Background: Severe mental illnesses (SMI) cause significant impairment for those living with the illnesses and often rely on caregivers for the ongoing care. Available evidence suggests that individuals responsible for caregiving may get distressed due to the caregiving experience, a phenomenon researchers call caregiver burden. Following the shift to community-centered mental health services, several studies on caregiving burden have been conducted in high income countries (HIC). However, there remains scarcity of data on the subject in SubSaharan Africa including Malawi. Therefore, the present study investigated the prevalence and associated factors of caregiving burden among caregivers of individuals with SMI at St John of God Hospitaller Services (SJOGHS) in Mzuzu-Malawi. Methods: The study adopted a hospital based cross sectional study. Recruitment took place at two outpatient departments of SJOGHS. Informal caregivers who were 18 years and above were asked to participate. The study recruited 139 caregivers and two research assistants approached participants at the waiting area. Caregivers who gave consent were asked questions about their caregiving activities using the Zarit Burden Interview (ZBI) (maximum score, 88). Data analysis was done using frequency distributions and descriptive statistics. The study used non-parametric tests such as a chi-square on all categorical measurements to test associations between variables and parametric tests such as t test on all continuous variables. The unadjusted and adjusted associations between socio-demographic factors and caregiving burden was conducted using logistic regression models. Results: On average, most caregivers experienced mild to moderate caregiving burden on the ZBI score (31.5 ± 16.7). In the adjusted model after controlling for caregivers’ gender, caregivers’ age, level of education, social support, care recipients’ age and care recipients’ gender, only caregivers’ age, social support and care recipients’ age remained significantly associated with caregiving burden. Older caregivers were more likely to experience caregiving burden than younger caregivers (OR=1.03, 95% CI 1.00-1.06), caregivers with social support were 71 % less likely to develop caregiving burden than those without social support (OR=0.29, 95% CI 0.14-0.62) and caregivers of older care recipients were less likely to experience caregiving burden than those of younger care recipients (OR=0.26, 95% CI 0.11-0.64). v Conclusion: Even though the caregiving burden found in this study was low compared to other previous studies in some arguably developed countries such as Iran and Turkey, it remains high in other developing countries such as Ghana and Nigeria. The low burden in this study, could be attributed to several factors and context in which the study was conducted. One such factor is the routine psychoeducation that the hospital often conducts for caregivers during the subsequent monthly reviews of their care recipients. An important follow up would be to investigate caregiving burden among caregivers who are unable to access the services at SJOGHS. The results of this study are important to guide policy in the formation of effective community programs that may assist mitigate the burden of informal caregivers. Finally, to understand the importance and implications of informal caregiving, further studies are needed in Malawi.

For this research, semi-structured qualitative interviews were conducted with primary caregivers that have adult children with disabilities. These interviews explored the lived experience of caregiving of primary caregivers. Three main themes surrounding care were found, all falling within the larger context of tensions in care. The first theme captures tensions in policy that promote empowerment but also produce disablement. Second, tensions exist between service agencies and lived experience of care. Lastly, tensions exist between were between the burdens and rewards of caregiving. It is these three themes and tensions that impact caregiving experiences at a personal level with the participants. These tensions are explored at a qualitative level and are illuminated by the lived experiences of the participants. Through this research the complex and understudied world of disability and care are explored. This research has implications for future policy development of support services for families that have an adult child with developmental disabilities. Further, these tensions illuminate the complex world of caregiving for those with disabilities in a way that examines life course impacts on caregivers themselves. / Thesis / Master of Arts (MA)

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As the number of elderly people increases, the need for care of frail elders also rises. When looking at elder care, feminist scholars have pointed to the need to consider not only the caregiver's gender, but also the interlocking power relations of gender and raceethnicity. For these reasons, this study addresses the following question: how does raceethnicity influence the relationship of gender and care of frail elders? Analysis of data on Hispanic (N=182) and non-Hispanic White (N=1252) frail elders, and their caregiver spouses (N=74 and N=742, respectively) and children (N=150 and N=654, respectively) taken from a study of a nationally representative sample of noninstitutionalzed elders (AHEAD), reveals that women (wives and daughters) are more likely than men (husbands and sons) to be the caregivers of Hispanic and of non-Hispanic White elders. With respect to the type of tasks involved in caregiving, the study shows that among non-Hispanic White elders, husbands are indeed involved in the personal care of their wives, and that daughters are more likely than sons to provide assistance with these tasks. Among Hispanic elders, husbands are more likely than wives to help with managing money. The study also reveals that daughters spend more total hours caring for their frail elders than sons do. Importantly, this study shows that daughters of Hispanic elders provide about 1.5 times more hours per week of care to their parents than daughters of non-Hispanic White elders. I also examined how the caregiver's gender interacts with their work status, marital status and number of children to affect the amount of time spent in caregiving, but did not find any significant relationships. / Master of Science

Master of Science / Department of Family Studies and Human Services / Rick J. Scheidt / In 2011, about 13 percent of the U.S. population, approximately 40 million people, were foreign born in the United States. Many of them participate in transnational caregiving, either as children supporting their parents in their country of origin or parents moving to the U.S. to help their children. This report examines research on transnational caregiving between immigrant adult children and their parents. Following the caregiving definitions of Finch (1989), the articles were reviewed and categorized as economic support, accommodation, personal care, practical support and childcare, and emotional and moral support. Changes in family norms and roles, and the caregiving responsibilities after immigration, are also presented. Keywords: transnational, caregiving, immigrant, elderly, economic support, accommodation, personal care, practical support and childcare, and emotional and moral support, living arrangement.

This project focused on developing a more complete picture of the event that most often occurs when an older adult’s health care needs can no longer be met in the community setting; the transition from home into a new long-term care (LTC) environment (i.e., assisted living [AL] or residential care [RC]). Informed by a life course perspective (Elder, 1998; Marshall, 2009) and by the health service utilization framework (Andersen, 1995; Andersen & Newman, 1973), this thesis explores the relationship between service users and their social and service contexts in the Fraser Health (FH) region of British Columbia. Employing a multi-method research design, two studies, one quantitative and one qualitative, were conducted. The goal of the quantitative study was to draw attention to individual, social, and structural factors (e.g., age, gender, marital status, presence of/relationship to primary caregiver, and health variables) that influence the transition from home and community care (HC) services to either AL or RC among older LTC clients (age 65+; N=3233) in three geographic areas (urban, suburban, and rural). Findings revealed that marital status, income, functional disability, and cognitive performance influenced type of transition for both rural and urban clients. However, gender, medical frailty (i.e., CHESS score), number of chronic conditions, and total hospitalizations emerged as significant among clients in suburban areas. The goal of the qualitative study was to draw attention to the role of family caregivers in the care transition context. Employing thematic analysis, this study drew on a sample of 15 semi-structured interviews with family caregivers who had helped a family member transition from home into a new care environment in FH. Out of this work, a conceptual framework was developed inductively to illustrate three key phases that seemed important in their care journey: ‘Precursors leading to transition’, ‘Preparing to transition into new care environment’, and ‘Post-transition: Finding a new balance Three overarching themes, labelled with direct quotes (in vivo), were also developed to capture how family caregivers made sense of their roles and responsibilities: “I’m just her daughter” / “I’m just his wife”, “Just go with the flow”, and “There wasn’t a door I didn’t try to open”. Overall, the findings from both studies draw attention to the importance of generating a better understanding of the local service and social contexts. Implications for social policy are addressed and highlight the need to continue to invest in efforts aimed at supporting older adults to remain in the community as long as possible, including ensuring appropriate forms of care are available and adequate resources for family caregivers are offered. / Graduate