Childhood trauma is a silent epidemic in South Africa. Yearly, thousands of children are abandoned and the trend is not showing any signs of abating. Institutional child and youth care centres do not have sufficient funding or resources for daily therapeutic services. This essential requirement falls onto inexpert caregivers, dedicated to making a difference and leaving no vulnerable child behind. A few studies were found that focused on caregivers caring for older children in institutional settings, but no research was identified that specifically focused on the care provided for infants and toddlers. Further studies have shown that the human brain develops rapidly in the first few years of life, being 80% fully grown at the age of 3 years and 95% by the time a child reaches 5 years old. Concluding that a child’s most important development happens between infancy and toddlerhood (birth to 3 years and 11 months of age), the aim of this study was to obtain an in-depth understanding of the views, perceptions, and experiences of caregivers caring for abandoned infants and toddlers in institutional care. Using a qualitative research approach and applying a phenomenological research design, complemented by an explorative, descriptive, and contextual strategy of inquiry, the researcher explored the phenomenon. The key focus point is to offer guidelines for better social work support. These guidelines were formed by the suggestions of the caregivers with the hope of improving their caregiver role. The systems theory with an eco-systems approach provided the lens through which the outcome of the study was shaped. People do not live in isolation, therefore their environment and peer relations shape their views, perceptions, and experiences. The researcher applied this theory to gain an understanding of how the caregivers’ outside world shapes their inner needs. In this instance, the caregiver receives directives in the caregiver role, but they are also subjected to the resources, support, and decisions of external role players, such as centre management, social workers, governmental facilities, courts, and the policies and legislation of the Children’s Act. It is for this reason that the study was performed; to give a platform to caregivers in order for their voices to be heard. Caregivers caring for numerous abandoned infants and toddlers can be overburdened, as these children are all impacted differently by the effects of abandonment. The findings from this study indicated that upbringing and religion play a large role in their decision to become caregivers to vulnerable children. Most of the participants became caregivers due to having a need and purpose to make a change in the lives of vulnerable children. With that said, a very small number of caregivers are in this role just to have a job and a salary at the end of the month. Various positive and negative experiences in the caregiver role were identified. Their positive experiences were aligned with a sense of meaning and purpose in the work they do. Negative experiences in the caregiver role were related to the sadness and distress they experience when children they have cared for are taken from them. Furthermore, under negative experiences, caregivers also expressed their struggles in caring for children with behavioural concerns due to early adversities. It was clear that abandonment does affect children living in institutional care on a multitude of levels. Caregivers expressed that through experience they have learned that the best way to bring healing to these children is through love and care. Forming a true attachment and bond with them is and an absolute must. Many resources are made available to caregivers in their caregiver role, but one resource that has been mentioned repeatedly as lacking is medical assistance. This also includes therapies for the children affected by abandonment. The caregivers stated that the assistance they receive included support from management, volunteers, their communities, and churches or religious groups. Support plays a large part in the caregiver role. Challenges experienced in the caregiver role range from difficulty with the children (such as behavioural issues), emotional stress, and burnout, to matters relating to management support and resources, financial instability and, lastly, the hurdles in relation to external role players (such as the social workers). Other obstacles include the lack of communication with external social workers and legal aspects, which include court proceedings and difficulties in obtaining birth certificates for abandoned children. Based on the research findings, recommended guidelines for social worker support, policy, and practice concerning caregivers caring for abandoned infants and toddlers in institutional care were formulated. Additional recommendations for further research were also suggested. / Social Work

Child Attachment-Related Conceptualizations of Parents, Teacher and Self; Forced Choice Visual Representations Along a Permitting/Blocking Access Dimension. Twenty-three 5 to 7-year-old boys were shown drawings depicting themselves with their mother, father or main teacher in one of 8 attachment-related situations. Subjects were primarily Caucasian and lived in a suburban neighbourhood in Richmond, B.C. They were asked to select from 4 response categories the caregiver "most like" their mom, dad or main teacher. Response categories were generated from attachment theory. Individual and group inner image profiles were developed from the 552 selections. The variable "situation", but not the variable "caregiver", was determined by loglinear analysis to be significant beyond the .05 level (p. = .035). The childrens' selections were demonstrated to be relevant and non-haphazard within and across response categories. The analyses provide significant support for the validity of the response categories and the centrality of the underlying dimension of "permitting/blocking access". In addition, the study supports the notion of viewing main female teachers after 9 or 10 months with a child - as an attachment figure to that child. A fairly generalized meta-structure of internal working models is suggested by this group profile. Finally, this study gives support to the notion of situational specificity of caregiver response under conditions of child attachment behavioural system activation. / Education, Faculty of / Graduate

Background: Canada relies heavily on family and friend caregivers to care for its increasing older population. However, many caregivers experience distress, which can jeopardize their ability to continue care provision and the health of their care-recipients. Objectives: This thesis research has three objectives: 1) Provide an overview of the burden and trajectories of caregiver distress in Ontario, and to compare differences in the experience of distress between caregivers of men and women; 2) Determine the association between caregiver distress and care-recipients' location of death; 3) Develop and test a comprehensive model of the relationships between caregiving factors, caregiver and care-recipient profiles, and caregiver distress. Methods: The main data source for objectives 1 and 2 is the Resident Assessment Instrument for Home Care, linked to multiple health administrative datasets at ICES. For objective 1, older (50+) community-dwelling adults in Ontario and their caregivers were examined. Descriptive analyses were performed to identify baseline and one-year change in caregivers' distress status, stratified by year of baseline assessment and care-recipients' level of care needs. Logistic regression was performed to identify the associations between care-recipients’ gender on caregiver distress. For objective 2, a retrospective cohort study of adult decedents in Ontario was conducted. Their caregivers' distress status within one-year of death was described, and logistic regression was performed to determine the association between caregiver distress and the odds of dying in non-palliative acute care. The data source for objective 3 is the General Social Survey-Caregiving & Care-receiving (cycle 26) conducted by Statistics Canada. The study population included respondents who have provided unpaid care within one year of survey. Exploratory factor analysis and structural equation modelling were performed to test a theoretical model of caregiver distress and its contributing factors and covariates. Results: From 2008 to 2015, there was a steady increase in prevalent, incident, and sustained caregiver distress. The increase was especially prominent among caregivers of individuals with lower care needs. Caregivers of older men were more likely to be distressed than caregivers of older women, largely because older men have greater health and functional impairments and required more care. Individuals cared for by distressed (vs. non-distressed) caregivers spent more time in non-palliative acute care in their last month of life and were more likely to die in non-palliative acute care. Receipt of home care and palliative home care greatly reduced the odds of dying in non-palliative acute care. Exploratory factor analysis established a well-fit model that represented caregiver distress and its five contributing factors: caregiving burden, disruptions of family and social life, caregiving history, caregiving network and support, and positive emotional experiences. Subsequent structural equation modelling found that disruptions of family and social life and positive emotional experiences had the largest associations with caregiver distress. Implications: Supporting older Canadians and their caregivers is a policy priority. This thesis research highlighted a rising trend of caregiver distress, identified risk and protective factors of distress, and determined the effect of caregiver distress on care-recipients' place of death. These findings can inform policy decisions and facilitate health systems planning. The risk factors found in this research can also be integrated into clinical assessments to identify caregivers at high risk of distress to provide them with timely and appropriate support. Enabling caregivers to provide quality care without being distressed is crucial for reducing cost incurred by the negative impacts of caregiving, ultimately reducing the overall healthcare cost of the aging population.

Thesis advisor: Judith Vessey / The objective of this study was to describe the parental perspective of caring for a child with intractable epilepsy. The purpose of this study was twofold: (1) to describe the caregiver transitions from caring for a healthy child to caring for a child with intractable epilepsy, and (2) to study families that provide caregiving, to identify the challenges, and learn how they address the intricacies and nuances of caring for a child with intractable epilepsy. The specific research questions that guide this study were: (1) What do parents of children with epilepsy find helpful or challenging during transitions from caring for a healthy child to a child with intractable epilepsy? (3) What factors enable parents to transition from caring for a healthy child to a child with intractable epilepsy? The research design used qualitative descriptive design and was based on naturalistic inquiry. This methodology was used to describe parental experiences using their own words and not interpret these experiences. Research participants were recruited from a Level 4 National Association of Epilepsy Center at a Children's Hospital in the Northeast. A purposive sample of twelve parental caregivers participated. Themes that emerged from the interviews included (1) Journey to Diagnosis, Connecting the Dots, (2) Drunken Sailor, Medication Management, (3)Negotiating and Advocacy for Education (4) Provider Challenges, Communication and Parenting and (5) It Takes a Village: Sibling, Family Members and Friends. Nurses play a significant role in education, advocating, and guiding families through the initial diagnosis to dealing with activities of daily living and future planning. This research study serves as a foundation for future intervention studies regarding how best to support parents of children with intractable epilepsy. / Thesis (PhD) — Boston College, 2013. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

Stroke is one of the most prevalent chronic illnesses in Canada. Family caregivers can make a significant contribution toward patients’ recovery. Caregivers’ emotions can impact their motivation to engage in empathy-related helping behaviours. The purpose of this study was to examine relationships among functional deficits of post-stroke individuals, family caregivers’ emotions, and caregivers’ ability to empathize with post-stroke individuals. As guided by Davis’s organizational model on empathy, a correlational descriptive methodology was employed. Participants were requested to complete four questionnaires. Study found that caregiver fatigue was the only factor associated with caregiver empathy-related behaviour. Analyses also found that communication deficits had a linkage with caregivers’ negative emotions. Study results will contribute to the current state of the literature on post-stroke care at home by understanding of the impact of caregivers’ psychological experiences on their empathy-related responses toward post-stroke individuals. Recommendations for clinical practice and future research were made based on this study’s results.

Stroke is one of the most prevalent chronic illnesses in Canada. Family caregivers can make a significant contribution toward patients’ recovery. Caregivers’ emotions can impact their motivation to engage in empathy-related helping behaviours. The purpose of this study was to examine relationships among functional deficits of post-stroke individuals, family caregivers’ emotions, and caregivers’ ability to empathize with post-stroke individuals. As guided by Davis’s organizational model on empathy, a correlational descriptive methodology was employed. Participants were requested to complete four questionnaires. Study found that caregiver fatigue was the only factor associated with caregiver empathy-related behaviour. Analyses also found that communication deficits had a linkage with caregivers’ negative emotions. Study results will contribute to the current state of the literature on post-stroke care at home by understanding of the impact of caregivers’ psychological experiences on their empathy-related responses toward post-stroke individuals. Recommendations for clinical practice and future research were made based on this study’s results.

Purpose: The purpose of this study was to describe the psychological effects on adult mental health of former young caregivers who provided primary care in youth; specifically, the positive and negative aspects of caregiving in youth and how childhood memories and experiences of caregiving affect the former child caregiver's adult mental health. Background: Caregiving is a rapidly emerging public health concern and the incidence of being a young caregiver is on the rise. Research shows the caregiver role effects both the physical and mental well-being of the caregiver; however, there is a paucity of information on the long-term effects of youthful caregiving on adult mental health and its impact on their psychological, social, and emotional development. Research suggests that providing primary care has both positive and negative consequences on children. ` Method: To gain a further understanding into the experiences of former young caregivers, three nurses, a Telemetry nurse, a Nephrology nurse, and a Nurse Practitioner were interviewed to form the case study. A content analysis of the interview data was performed to identify commonalities, emotional memories, past and current triggers, and reflections to provide a deeper insight into the perspectives of each participant as they shared their views on the positives and challenges experienced as a young caregiver, in addition to the impact caregiving has had on their adult mental health. Findings: Common positive experiences shared between participants included benefit finding, social support, and influence of self-identity and career choice. Common challenges experienced involved lack of education and resources, impact on school performance, impact on friendships, impact on physical health, unresolved anger, and depression. Their experiences were dependent on several factors such as their age and gender, school status, gender of the care recipient, progression or severity of the illness/disability, and family closeness; however, the three common variables having the greatest influence on mental health was parentification, social support, and becoming a wounded healer. Implications and Conclusion: The data from this qualitative descriptive study broadens our awareness into the importance of identifying this hidden population and the need for development of effective services aimed and preventing and treating depression.

Indiana University-Purdue University Indianapolis (IUPUI) / To date, only two studies, both using the same sample at two different time points, have quantitatively examined outcomes in Black caregivers of individuals with autism spectrum disorder (ASD). This study examined family adaptational outcomes in Black and White caregivers of individuals with ASD using the double ABCX model of family adaptation to examine the impacts of stressors, the A in the model (e.g., autism symptom severity, general life demands), resources/supports, the B in the model (e.g., social support), and individual coping/stress appraisal styles, the C in the model (e.g., cognitive appraisal, religious coping) on caregiver positive and negative adaptation outcomes, the X in the model, (e.g., caregiver strain, benefit finding, family quality of life). Black and White caregivers were compared on adaptation outcomes at the family, dyadic, and individual level, including both positively valenced (e.g., benefit finding) and negatively valenced outcomes (e.g., depression, caregiver strain). Participants were Black (N = 24) and White (N = 32) primary caregivers of individuals with ASD. Racial differences were found for both the general and racial-specific factors in the ABCX model. White and Black caregivers reported moderate and equal levels of caregiver strain. However, Black caregivers reported greater levels of anxiety and depression and lower levels of life satisfaction. When adjusting for potential ABC covariates, racial differences in outcomes were no longer significant. That is, racial differences in outcomes could be explained by differences in the proximal elements represented by the ABC variables of the model (e.g., passive-avoidance coping, religious coping). Black caregivers reported higher levels of pile-up of demands, formal social support, threat appraisal, passive-avoidance coping, and positive and negative religious coping than White caregivers. Different factors were related to caregiver strain in the two racial groups. Conscientiousness was a protective factor against caregiver strain for Black caregivers, whereas greater use of passive-avoidance coping and threat appraisal, higher levels of neuroticism and barriers to care, and lower levels of satisfaction with services, parenting self-efficacy, and formal social support were explanatory factors for increased caregiver strain among White caregivers. These results are helpful in informing interventions and support the cultural adaptation of care as provided to Black caregivers of individuals with ASD.

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