A qualitative study of 15 families caring for an elderly parent in a noninstitutional setting was conducted for the purpose of discovering how families perceive and carry out their responsibilities to their older relatives. Forty-three persons representing up to three generations per family were interviewed. They articulated the meaning of their responsibility to care for the parent, how they learned to be responsible to family members, and what experiences inside and outside the family shaped their sense of responsibility. They expressed their views about how family caregiving labor should be divided between male and female members. Questions about the factors that affected use of services provided by persons other than family were asked of all families. Results suggested that caregiving in this context requires balancing the needs of the parent with those of the whole family. Caregivers learn their responsibilities through incorporating family member expectations, through role modeling of family and friends, and through a continuous process of role-making. A sense of filial responsibility is shaped by feelings and interpersonal ties within the multigenerational family. Although respondents were divided in their thinking about which gender was best suited to assist the aged parent, most families practiced a very traditional gendered division of labor when helping their parents. Of the factors affecting use of formal care services, need of the older person for additional assistance was the most important. The family’s sense of responsibility was not altered by use of formal care services. Data from this study advance development of family caregiving theory by specifying relationships among perceptions of responsibility to the older person, individual and family ethos, and family caregiving patterns, and by delineating the components of family ethos. Findings affirm previous theoretical work on factors that affect family use of formal services. Results demonstrate that formal care services are valued by elderly persons and their families, and suggest the need for long-term care policies that offer home care services to all disabled adults. Findings indicate that obtaining data from multiple family members is desirable when seeking information about family relationships that contribute to family caregiving patterns. / Ph. D.

Caregiving to the elderly in both the paid and unpaid spheres involves a crucial component, emotion management, that is often invisible despite its importance to the delivery of care. As well, little is known about how caregivers’ emotion management in one setting is related to its expression in another. This thesis is an exploration to gain a greater understanding of the ways in which the contexts of caregiving shape the emotion management involved, in hopes of contributing to the knowledge of an important dimension of caregiving and women’s work in the two spheres. Based on the narratives of women who work as caregivers in both the paid and unpaid spheres simultaneously, I use a socialist-feminist perspective to analyze the ideology and structure that shape contexts in which emotion management occurs in caregiving. I explore how these contexts affect the experience of emotion management, and how the contexts might impact one another and the emotion management performed in each. / Master of Science

The concept of resilience, which indicates people's capability of using resources in difficult circumstances in order to reduce or prevent negative effects and achieve positive outcomes, has given a new perspective to the scientific literature on the experience of late-life memory loss and the experience of caring for persons with memory loss. The current research was guided by incorporation of resilience into the stress process model for assessing personal and caregiver burden associated with mild and more severe memory loss. I conducted two studies to investigate the association of protective factors with the well-being of people with dementia or mild cognitive impairment and their caregivers. The first study focused on the well-being of older persons with dementia (PwDs). I employed data from a large national sample of older adults to examine how the perceived social cohesion of neighborhoods affects quality of life among people with and without cognitive impairment in conjunction with their engagement in valued leisure activities. Findings revealed that, regardless of cognitive health status, all participants who perceived high neighborhood social cohesion reported better quality of life along with more participation in valued activities. However, PwDs reported significantly lower perceived neighborhood social cohesion, less involvement in valued activities, and poorer quality of life than persons without cognitive impairment. The second study focused on the well-being of caregivers for older persons with mild cognitive impairment (PwMCIs). I used dyadic data from families dealing with mild cognitive impairment to examine how well-being of caregivers for PwMCIs differed according to whether PwMCI-caregiver dyads had similar or different perceptions of the PwMCIs' cognitive impairment severity. Caregivers reported lower caregiving burden when they and PwMCIs had a similar cognitive impairment representation, or when caregivers rated the PwMCIs’ cognitive functioning more positively than the PwMCIs rated themselves. Also, PwMCIs’ and caregivers' perceptions, and their concordance or discrepancy in those perceptions, varied across the multiple domains related to MCI symptoms. These findings demonstrate that care dyads' perception of MCI-related deficits is not a unitary construct, and that the context of PwMCIs’ and caregivers’ dyadic illness appraisals is significantly associated with the caregivers' well-being. Taken together, the results of these two studies illustrate the value of considering resilience processes in people with cognitive impairment and their caregivers. Examining dimensions of resilience, in association with assessment of the intersecting effects of personal, interpersonal, and environmental factors, provides additional information about the effects of cognitive impairment on older adults’ well-being and the effects of assisting someone with cognitive impairment on caregiver well-being. / Ph. D. / Resilience indicates people's ability to successfully adapt to or bounce back from life adversity by using personal, social, and environmental resources. Resilience helps explain what makes some people with dementia and their caregivers tolerant of changes in memory functioning and able to adapt to difficulties associated with dementia. I conducted two studies to investigate the role of protective resources in buffering negative effects of memory loss on people with dementia and their caregivers. The first study compared people with and without dementia to find out how their sense of belonging to the community and their participation in valued leisure activities influenced their quality of life. Regardless of whether they had memory loss or not, all the people with a stronger sense of belonging in the community participated in more leisure and valued activities and, in turn, had better quality of life. However, compared to cognitively healthy people, those with dementia had lower sense of belonging, less participation in leisure activities, and poorer quality of life. These findings indicate that people with dementia may feel excluded from their community and experience barriers to participation in valued activities. Nevertheless, feeling that one belongs in the neighborhood and participating in valued leisure activities is important for well-being of older adults both with and without cognitive impairment. The second study examined how the well-being of caregivers for persons with mild cognitive impairment (MCI) differed according to whether caregivers and their care recipients had similar or different views on the care recipients’ memory problems. When they both had similar views or the caregivers had a more positive view than their care recipients did, the caregivers reported higher well-being. This finding suggests that some caregivers for people with MCI understand how the person with MCI views their own memory loss, and others either are not aware of all the memory loss symptoms or choose to ignore some of them. In either case, these caregivers feel less burdened than those who think their loved one’s symptoms are worse than the person with memory loss believes. Support for these caregivers is needed to help them cope better with the memory loss in their loved one. The results from these two studies provided valuable evidence about resilience in older adults facing memory loss and their caregivers. Being resilient can help people with dementia and their caregivers manage or overcome the difficulties associated with dementia.

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Cette thèse a pour objectif d’éprouver la mise en actes du dispositif de prise en soins dans la relation d’aides ausujet fragile à domicile. Ce travail est envisagé par une étude multidimensionnelle des caractéristiquespsychologiques liées à l’acte d'aide à domicile et celles de leurs conséquences en termes de psychopathologies etde qualité de vie. Selon les données de notre étude, le profil du dispositif de prendre soin à domicile s’ancre dansun axe très médicalisé. Un axe qui va à l’encontre des besoins et attentes des sujets fragiles comme de leursaidants qui soulignent une nécessité fondamentale de lien social. Parallèlement, nous constatons que lesdispositifs de prendre soins à domicile, aujourd'hui mis en place, ne sont pas de « vraies réponses » et restentencore largement sous-utilisés. L’Aidant-Expert n’est pas soutenu dans la construction de ses proprescompétences à savoir-faire et savoir-être. Il est dans l’incapacité de venir dire quelque chose de sa réalité du vécude l’aide ou de souligner la complexité des situations de prise en soins investies. Les résultats de ces travauxsoulignent, par ailleurs, un risque élevé d’accidents à domicile renforçant un sentiment de vigilance extrême. Cesdonnées vont dans le sens de l’analyse plus fine des réels besoins et attentes des acteurs de l’aide. In fine, cettethèse permet de mettre en exergue des recommandations à envisager pour une prise en soins adaptée du sujetfragile et de son entourage à domicile. En effet, la prise en considération de l’expérience collective del’environnement d’exercice de l’aide permettra de venir contrebalancer les effets délétères de cette prise en soinspermettant alors une mise en actes au plus juste du dispositif à domicile. / Our work aims at enhancing the quality of home caregiving for vulnerable patients. This objective is assessedvia a multidimensional study evaluating psychological characteristics of home caregiving, and also theconsequences of these acts on mental health and quality of life.Our data show that the structure of home caregiving is mainly of medical significance. A significance thatresponds to expectations of patients and their caregivers, and also the social interactions between both caregivingactors. We hence conclude that the actual structure of home caregiving does not refers to “right answers” andstill widely underused. Furthermore, the expert caregivers are likely to lack structuring of their competencies, asrelated to their know-how and life skills. These professionals show great difficulties expressing 1) the nature oftheir professional experience and 2) the complexity of some of their tasks. Another finding of our work is relatedto a high risk of home accidents which induces an important level of alertness. This outcome fits with a detailedanalysis of caregivers’ needs. Finally, our work highlights some recommendations for a better home caregivingfor vulnerable populations and their families. It seems that taking into account the collective experience of thecaregiving environment would address the deleterious effects of home caregiving, which may enhance thequality and efficiency of such intervention.

Optimal responsiveness to infant cues, an integral component of parental caregiving, is thought to be determined by multiple factors including maternal mood, previous experiences of caregiving, and infant characteristics. This thesis builds on previous work and details novel investigations of brain, affective, and attitudinal responses to infants/children. In the first two studies, we investigated the effects of maternal mood and parity (previous experiences of caregiving) on brain response to affectively positive infant pictures using functional magnetic resonance imaging (fMRI). We found that mothers with postpartum depression showed an elevated right amygdala response to infant pictures in comparison to mothers without PPD and depressed non- mothers. Further, functional connectivity between the bilateral amygdalae and the right insular cortex was negatively correlated with clinical symptoms (self-reported depression and anxiety). Therefore, as depression and anxiety symptoms increased amygdala to insular cortex connectivity decreases and vice versa. In the third study, we developed a novel data-driven infant cuteness (DDIcute) metric using the infant pictures presented in the first two studies. In line with ethological postulations on cuteness (infant characteristics), we found that infant pictures with a higher DDIcute score were associated with increased positive/approach-related affective responses and decreased negative/avoidant-related affective responses. In the fourth study, we investigated whether the sex differences in attitudes about children and childcare were moderated by pet ownership/care (previous experiences of caregiving). We found that pet ownership and care eliminated sex differences in attitudes about children and childcare. This effect was driven by males; compared to males with low levels of experience caring for pets, males with high levels of experience caring for pets had more positive attitudes about children and childcare. / Thesis / Doctor of Science (PhD) / The work presented in this thesis adds to literature on human caregiving. In different studies we investigated brain, emotional, and attitudinal responses to human babies and children in people with and without depression as well as in people with different levels of caregiving experience. In the first two studies, we measured brain response to smiling baby pictures in depressed and non-depressed mothers and non-mothers. The amygdala is a brain region that is involved in the neurobiology underlying both depression and maternal behaviour. We found that amygdala response was the highest among mothers with postpartum depression. We also found that the coupled activity of the left and right amygdalae and another brain region called the insula was altered in mothers with postpartum depression. In the third study, we measured facial features of the baby faces presented in the first two studies to develop a measure of cuteness. We also measured emotional responses to the baby faces. We found that cuter infants elicited more positive and less negative emotional responses. In the fourth study, we measured differences in attitudes about children and caregiving between men and women who did and did not own and care for pets—specifically dogs and/or cats. We found that compared to men who did not own and/or care for pets, men who had more experience caring for pets had more positive attitudes about children and childcare.

Huntington's Disease (HD) is a rare condition that has been under-researched by the medical professions and psychologists alike. There is a clear lack of psychological literature on the subject of HD and furthermore, there are no adequate QoL scales available for use by spousal carers. The development of a HD specific QoL scale (HDQoL-C) for this special population, brings together theoretical constructs and practical application in order to produce a user-friendly QoL measurement for spousal carers of HD patients.

The purpose of this study was to evaluate the impact the primary caregiving role had on men's perceptions of leisure. The Assessment of Leisure and Recreation Involvement (Ragheb, 2002) was used to examine men's leisure. Twenty-five stay-at-home dad groups were solicited via e-mail; 81 men submitted usable responses to an online survey. Respondents considered themselves the primary caregiver for children in the household and at least one child was younger than 12. Descriptive data were collected about the experience of being a primary caregiving father, demographics, and how the caregiving role affects the men's perceptions of leisure. Caregiving fathers in the sample resembled the perceptions of many primary caregiving mothers. Perhaps the "caregiving" role, rather than gender, is a more distinct variable explaining perceptions of leisure by parents.

Caregiving can be stressful, and older adults’ health and well-being may be impacted by the roles and responsibilities they assume as caregivers for persons with serious mental illness (SMI). This study is the first to apply the Stress Process Model of Caregiving (SPM) in an attempt to understand how mental illness stigma influences caregiver outcomes, specifically their desire to relinquish care. The intent of this study was to call attention to care relinquishment as an under-studied stress process outcome and to explore stress factors, with a focus on mental illness stigma, that contribute to SMI caregivers’ desire to relinquish care. Using convenience sampling, members of the National Alliance on Mental Illness in the eastern U.S. were invited to participate in an online survey, resulting in a sample of n = 285. Regression analysis findings suggest that caregivers’ partnership status, exposure to problematic behaviors, and perceptions of courtesy stigma predicted desire to relinquish care. Neither age nor caregiver sense of mastery moderated the relationship between perceived courtesy stigma and relinquishment desire. Perceptions of stigma were negatively associated with caregiver health, sense of mastery, and social support levels, indicating stigma’s role in the erosion of caregiver resources. This study provides information that can inform the development of educational and supportive services that may help caregivers better cope with the stressors associated with SMI caregiving. With caregiving stressors diminished, older caregivers will be able to better apply their resources toward self-care and maintaining their quality of life.