The dissertation examined family caregivers’ perceptions of wandering behavior after their loved one has been diagnosed with ADRD (Alzheimer’s disease and related dementias). Semi-structured in-depth face-to-face interviews of a convenience sample of 22 caregivers in the Dallas metropolitan area were conducted. Responses were analyzed using a grounded theory approach. The use of qualitative methods facilitated the study of how caregivers of a loved one with ADRD understood and explained in their own voice the wandering behavior associated with the disease and how their views of the behavior informed the caregiving process. In particular, this research examined why some caregivers tend to recognize wandering behavior as significant early on while the ADRD patient is still living in the home (and community) and modifications can be made to keep him or her there despite the behavior, and why some caregivers do not. Findings indicated that caregivers were concerned about the general safety of their loved one. Precautions were taken within the home for conditions related to frailty, but were much less likely to be taken to address wandering behavior and its negative consequences. Three groups of caregivers emerged: (a) those who primarily reacted to their loved one’s problem behaviors including wandering, and intervened minimally; (b) those who were proactive, making modifications in their routines and environment to protect their loved one after a trigger event; and (c) those who had a mixed response, who did the best that they could with what they had. This last group of caregivers took on additional roles, modified their homes for safety, but environmental stressors and inadequate supports limited their interventions. Implications of the findings for aging in place and community, further research, policy-making, and practitioners are discussed.

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.

Rationale: Many community-dwelling stroke survivors receive care from their family, often daughters. However, we lack in-depth information on the caregiver/care-recipient relationship and its impact on adult daughter caregivers (ADCs). Objective: To systematically review the caregiving literature and qualitatively explore the pre-and post-stroke parent-to-child relationship and its association with ADCs’ well being. Method: A qualitative descriptive methodology used in-depth interviews of 23 ADCs. Analyses generated themes. Findings: Four themes were revealed: 1) The pre-stroke ADC-to-parent relationship is associated with the decision to take on the caregiving role; 2) Changes in the parent-to-child relationship occur as a result of providing care; 3) Changes to an ADC’s relationships with others arises from providing care to a parent and 4) Changes to caregiver lifestyle, outlook and physical and emotional well being arise from caregiving. Conclusion: There is a need for interventions that focus on role strains and issues related to relationship loss.

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.

Rationale: Many community-dwelling stroke survivors receive care from their family, often daughters. However, we lack in-depth information on the caregiver/care-recipient relationship and its impact on adult daughter caregivers (ADCs). Objective: To systematically review the caregiving literature and qualitatively explore the pre-and post-stroke parent-to-child relationship and its association with ADCs’ well being. Method: A qualitative descriptive methodology used in-depth interviews of 23 ADCs. Analyses generated themes. Findings: Four themes were revealed: 1) The pre-stroke ADC-to-parent relationship is associated with the decision to take on the caregiving role; 2) Changes in the parent-to-child relationship occur as a result of providing care; 3) Changes to an ADC’s relationships with others arises from providing care to a parent and 4) Changes to caregiver lifestyle, outlook and physical and emotional well being arise from caregiving. Conclusion: There is a need for interventions that focus on role strains and issues related to relationship loss.

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No description available.

This study explored the nature of attitudes and expectations about support and caregiving in seven adult stepchild-stepparent (matched) dyads (N=14) using qualitative interviews analyzed with thematic and constant comparative methods. Findings indicated that all stepchildren in the sample would consider contributing some sort of care/support to their aging stepparents if necessary, but that not all stepchildren considered it their responsibility to do so. Likewise, most stepparents would expect at least some kind of care and/or support if they needed it. For stepparents this was often qualified as emotional support and certain kinds of instrumental help. In summary, the expectations of stepchildren and their stepparents are tied to four major factors: (1) family history and family ties; (2) gender; of stepchild (3) history of exchange and support; and (4) feelings of loyalty of stepchildren towards their biological parent. / Graduate

This thesis explores the experience of dementia as recounted by family carers and people with the early experience of dementia. Between October, 1992 and May, 1996 sixty four semi-structured interviews were conducted with family carers of people with dementia using a modified grounded theory approach. Constant comparative analysis of the data led to the emergence of a five stage integrated scheme to explain their experiences, namely: Recognising the Need (1); Taking it On (2); Working Through It (3); Reaching the End (4); and A New Beginning (5), with critical junctures attached to each stage which either locked the carer in, or moved the carer through, the model. A second phase of data collection comprised eleven interviews with ten people with the early experience of dementia and their family carers. Analysis of these data resulted in the emergence of the stage of Keeping it Hidden with its supporting strategies: Closing Down; Regrouping; and Covering your Tracks which help to explain how people with early dementia manage their changing cognitive abilities. Following a theoretical integration of the two phases of data collection the process of 'working' emerged in three forms, i.e. Working Apart; Working Together; and Working Alone to explain movement between the above two models. Transcending the data, the study also generated the linking scheme of Maintaining Involvement to help explain the dynamics of dementia. The 'fit and grab' of this linking scheme was subjected to preliminary empirical scrutiny via a third series of interviews with six carers of people with dementia. It is suggested that the grounded theory emerging from this study helps to explain the shared experience of dementia, while also having implications for policy and practice which are briefly explored in the concluding chapter, together with some of the methodological implications and limitations of the study.

Purpose: Family caregiving is vital to the health of persons with schizophrenia and without this support, many individuals would struggle to maintain their community tenure. While there is an abundance of literature that explores family caregiving in mental illness generally, less is known about the experiences of family caregivers of persons with schizophrenia. Furthermore, the primary caregiver for a person with schizophrenia tends to be a parent, and parent caregivers’ experiences differ from those of other types of family caregivers, such as spouses and children. Often, the experiences of parents’ caregiving for a person with schizophrenia are intermixed with the experiences of other types of family caregivers, which might minimize or distort their particular subjective realities. The purpose of this Thesis is to explore the experiences of parent caregivers of adult children with schizophrenia (ACWS) through a synthesis of existing literature and interviews with parent caregivers. Objectives: There were two objectives: 1) to review existing literature on the experiences of parent caregivers of adult children with schizophrenia and 2) to explore the experiences of parent caregivers of adult children with schizophrenia in a large urban Canadian city. Methods: This was a two-phase study using an emergent design. Phase one was an evidence synthesis of qualitative research on the experiences of parent caregivers of adult children with schizophrenia, modeled on the Joanna Briggs Methodology for qualitative systematic reviews. The review was conducted in accordance with the ENTREQ statement and all standard procedures were followed for citation screening, data extraction, and quality appraisal. Five Exploring the Experiences of Parent Caregivers in Schizophrenia iii studies were included from four countries (2009 – 2016). Phase two was an Interpretive Description qualitative study using interviews to explore parent experiences of caring for adult children with schizophrenia. Twelve parents (eight mothers and four fathers) completed interviews. In both phases of research, conventional content analysis was used to analyze data. Findings: Findings from the qualitative evidence synthesis revealed that parent caregivers of ACWS experience psychological distress, losses related to self and to child, and significant consequences for their families. Importantly, parent caregivers frame their experiences in positive and meaningful ways, which help them cope with their role. Parent caregivers included in the qualitative study described experiences of uncertainty and change related to their child’s schizophrenia and subsequently the actions they needed to take that were counter to their expected parent role. These parents further described the negative and positive effects of caregiving on their own lives. Finally, when comparing the findings of both phases of research, there were two cross-cutting considerations. First, parents have difficulty using and understanding the resources available in the mental health care system. Second, parents experience distress in their caregiver roles, and this distress is often induced or worsened as a result of barriers to treatment for their ACWS. Conclusion: Parent caregivers for persons with schizophrenia experience tremendous difficulty navigating the health care system. These challenges compound the psychological distress they already experience, by virtue of their role. Often, these parents prioritize their caregiving responsibilities above their own health and well-being. Health care providers must understand, acknowledge, and address parent caregivers’ needs, advocate for a less fragmented mental health care system, and support parent caregivers to be empowered and satisfied in their role.