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.

Guided by the life course perspective, this study examined the frequency of caregiving provided by older adults to kin and non-kin. A telephone survey produced a random sample of adults 60 years of age and older, which was predominantly White, with higher income and education levels (n = 278). Bivariate and multivariate analyses tested the impact of demographic characteristics and other variables, conceptualized as physical, human, and social capital, on the frequency of caregiving. Gender, age, health, limitations, education, income, household composition, social contact, and reciprocity were analyzed in multinomial logistic regressions. Caregiving was defined as care provided to sick or disabled persons, with frequency of providing care classified as often, sometimes, and never. The majority of older adults provided at least some care to others over a one-year period, with almost one-third doing so often and only one-quarter never doing so. Most provided care to more than one person, with over one-quarter providing care to multiple friends only. Age failed to predict caregiving involvement when physical and social capital variables were considered. The odds of often providing care are higher for women, although gender did not predict those who never provided care. Having at least some college only significantly predicted women who often provided care. Living with a disabled person increased the frequency of caregiving, although that care was not always for the disabled person. Similarly, living with a spouse, as compared to living alone, increased caregiving involvement but often the spouse was not the care recipient. These findings highlight a need for policy changes that will support and recognize the contributions of older caregivers of both family and friends. The definition of caregiving is another policy issue that should be addressed. These findings also challenge policymakers and community leaders to promote informal caregiving by providing educational programs to enhance and better utilize the talents, abilities, and altruistic concerns of older caregivers.

Mothers of children with disabilities face a variety of problems compared to other mothers, but their experiences are not universal. This thesis provides a critical analysis of caregiving and disability by examining the experiences of a group of low-income African American mothers with children with disabilities. It explores the impacts of race, class, gender, and disability on mothers' experiences in the context of conflicting employment and caregiving demands for poor women. Drawing on in-depth qualitative interviews with ten low-income African American mothers of children with disabilities, I illustrate how the struggles of raising a child with a disability are amplified in the face of race and class inequalities. As a result, these women redefine the notion of personal responsibility and employ a series of survival strategies.

Thesis advisor: Jacqueline V. Lerner / The current study examines the development of social skills in delinquent adolescents in the context of the care they receive in a residential treatment facility (RTF). Reviews of prevention and intervention programs for delinquency have provided support for parent training and child social skills training as the most promising approaches to treatment. However, for adolescents in an RTF, their primary parental figures have become the care workers with whom they are placed. Based on their caregiving behaviors, these workers could provide an environment that counteracts or exacerbates the effects of the residents' prior experiences. Therefore, three major factors that may influence the social skills outcomes of adjudicated youth will be examined: (1) the prior effect of family life, (2) the current effect of youth workers, and (3) the possible interaction between (1) and (2). Using a sample of 82 delinquent adolescents (aged 13-18 years old at entry) and 41 of their caregivers from a RTF, OLS regression models indicate that several factors at the individual level and in the treatment milieu are important to consider when addressing social skills development for delinquent youth. At the individual level, adolescents identified as early-onset delinquents entered treatment with lower social skills, but also experienced the greatest improvement in these skills while in treatment. In addition, older youth and youth from larger households entered treatment with higher levels of initial social skills on average. When considering the behaviors of care workers, two caregiving measures were surprisingly associated with positive social skills growth - caregiver psychological control and attributions of internality and controllability. The unexpected relationships between caregiving and positive development are discussed with an emphasis on the unique characteristics and context of the present sample. / Thesis (PhD) — Boston College, 2009. / Submitted to: Boston College. Lynch School of Education. / Discipline: Counseling, Developmental, and Educational Psychology.

PhD (Physiotherapy), Faculty of Health Sciences, University of the Witwatersrand / Despite the improvements that have been made in health care over the years, stroke remains a serious public health problem in low, middle and high-income countries. Post-stroke, there are many consequences that manifest and these include mortality, morbidity and socioeconomic, affecting not only the stroke survivor but also the caregiver. These consequences are felt hardest in low and middleincome countries because they are the least able to deal with health related setbacks to development. Pressure for beds and the need to reduce hospitalisation related costs have resulted in early discharge home of patients culminating in caregivers playing a more significant role post-stroke. The role played by caregivers has of late received much attention and is well documented in highincome regions. Informal caregivers are particularly important in low resourced settings. Caregivers play an important role in the rehabilitation process of the stroke survivor. The discharge home of patients with stroke to unprepared caregivers is associated with burden or strain, which negatively affects the quality of life of not only the caregiver but the stroke survivor as well. The effect of a structured, individualised caregiver training programme on patients with stroke and their carers has not been established in sub-Saharan Africa in general and South Africa in particular. With this in mind, the aim of the study was to establish the impact of caregiver education on the morbidity of the stroke survivors and on the quality of life of the stroke survivors and their carers. The specific objectives of the study were to establish the: physiotherapy caregiver education programmes and associated content in use for managing patients with stroke at Chris Hani Baragwanath hospital, effect of caregiver education on the mobility of the stroke survivors, effect of caregiver education on the health related quality of life of the stroke survivor and the caregivers, effect of caregiver education on the ability of the stroke survivor to socialise and participate in community issues and also the patient and caregiver characteristics associated with caregiver strain post-stroke. To achieve the first objective, a self designed questionnaire was used to establish the physiotherapy caregiver education programmes and associated content in use for managing patients with stroke at Chris Hani Baragwanath hospital from the physiotherapists at the hospital. For the rest of the objectives, a stratified randomised controlled trial using concealed allocation with a broad entry and blinded outcome assessment at baseline, three, six and 12 months was used for data collection. The participants for the study were first time ischaemic patients with stroke admitted to Chris Hani Baragwanath hospital, Soweto, Johannesburg, South Africa. A total of 200 patients and their caregivers participated in the study. These were randomly assigned to either the control group or the experimental group. The caregivers in the experimental group were subjected to an individualised training programme just prior to discharge of the patient with stroke and at the three month follow up. The assessor was blinded to the group allocation of the patients and caregivers until after completion of the study. From the study, the one-year case fatality was 38%. The mean hospital length of stay for patients with stroke was six days and the average number of physiotherapy contacts for the stroke survivors was one. The content of the rehabilitation programme of patients post-stroke was well structured and appropriate at Chris Hani Baragwanath. However, there was no caregiver involvement or training during in-patient rehabilitation. The barriers to caregiver involvement included perceived high workload by therapists, short hospital length of stay, poor referral systems between clinicians and therapists of patients post-stroke and caregivers being unavailable during working hours for training purposes. Using the Barthel Index (BI) scores, 78% of the patients were functionally dependent at 12 months post discharge. None of the patients were fully independent in mobility and stair climbing. The experimental group had better mean BI scores at the three and 12 month follow up periods (p = 0.01 and p = 0.05 respectively) when compared to the control group. Caregiver education had the effect of improving the BI scores by one and 0.7 at the three and 12 months follow ups respectively. However, the functional abilities of the patients from both groups were still low at 12 months with averages of 13.3 and 12.6 for the experimental and control groups respectively (out of a possible 20). The overall patient mobility scores as measured on the Rivermead Mobility Index were low over the study period with averages of 9.1 and 8.5 for the experimental and control group respectively (out of a possible 15). However, the experimental group had slightly better Rivermead Mobility Index (RMI) scores, which were not statistically significant. Caregiver education had the effect of reducing the risk of death by 27% relative to that occurring among the control group patients. The health related quality of life of the stroke survivors was generally poor over the study period. The baseline means from their EQ-5D scores (for health related quality of life) were 42.4 and 43.7 for the control and experimental groups respectively, which rose to 67 and 68.8 at 12 months respectively post discharge. Caregiver education had the effect of improving patients’ EQ-5D scores by a factor of three and this was only at 12 months. The caregivers’ quality of life generally declined over the 12 months of the study period (more in the control group than the experimental group) from averages of 92 and 93 at three months (for the control and experimental groups respectively) to 83 and 86 (respectively) at 12 months. However, the experimental group had better mean EQ-5D scores (health related quality of life) than the control group (p = 0.001). Caregiver education had the effect of improving EQ-5D scores by factors of 3.4 and 3.6 at the six and twelve month follow up period. The ability to socialise and participate in community issues was poor. None of the participants could carry out single and multiple tasks without assistance at 12 months post discharge. More than 87% of the patients had mild to moderate difficulty with walking at 12 months post discharge and they were all unable to lift and carry objects, have fine hand use and move around with equipment without assistance. None of the patients was able to carry out domestic activities without any difficulty and consequently they could not prepare meals and do housework without assistance from helpers. All of the participants had mild to moderate and severe to complete difficulty in basic interpersonal interactions, complex interpersonal interactions and formal relationships. They all had mild to moderate difficulty engaging in recreation and leisure activities while 27% of the control group and 25% of the experimental group had severe to complete difficulty with community life at 12 months post discharge. The design, construction and building products and technology for both public and private use were cited as barriers to community participation. More than 50% of the patients also cited friends as being barriers to community participation but acquaintances, colleagues, neighbours and community members were cited as being facilitators together with personal care providers (caregivers). Transport services, systems and policies were also cited as barriers by more than 80% of the participants. Caregiver education did not seem to influence patients’ ability to participate in community issues given the similarities in percentages between the control and experimental groups. At three months post discharge, 89% of the caregivers in the control group and 92% of those in the experimental group were strained from caregiving duties. However, these percentages declined to 78% and 43% respectively at 12 months, showing the effectiveness of caregiver education. Caregiver education had the effect of reducing strain by a factor of 2.6 at 12 months. The patient characteristics that were associated with caregiver strain were the dependency levels in transfers, mobility, dressing, bathing, poor activities of daily living scores, patient anxiety/depression, pain and poor perceived health state. The only caregiver characteristic that influenced caregiver strain was the level of education. The reduced hospital length of stay, pressure for beds and possibly inadequate rehabilitation personnel levels means that its possible that some caregivers are not adequately trained to meet patient needs, although this needs to be confirmed with further controlled research. The current pressure on in-patient services at Chris Hani Baragwanath hospital is resulting in suboptimal exposure to rehabilitation of patients post-stroke. There is insufficient organised caregiver education at present. Structured individualised caregiver training has the effect of positively influencing the health related quality of life of the patients especially at six and 12 months post discharge. Caregivers for patients with stroke suffer from physical, financial and psychological problems, which negatively affect their health related quality of life. Currently, high levels of caregiver strain persist poststroke. Caregiver education however has the effect of reducing the decline in caregiver health related quality of life over time. Caregiver training did not positively influence patient mobility and this is most probably because the patients had very low or poor functional ability levels at discharge from hospital. However, structured and individualised caregiver training has the effect of improving patients’ quality of life and can help reduce deaths among stroke survivors. The patient ability to socialise and participate in community issues post-stroke is currently poor. This mainly stems from the poor functional ability levels, which necessitate dependency on caregivers. Compounding the low functional ability levels are the transport systems, services and policies, attitudes of friends and the design, construction and building products and technology for both public and private use, which are barriers to community participation. The high patient dependency levels result in caregivers being highly strained. The patient characteristics that influence caregiver strain are dependence in transfers, grooming, mobility, dressing, poor activities of daily living, patient anxiety/depression, pain and poor perceived health state (health related quality of life). The only caregiver characteristic that was associated with caregiver strain is the level of education. The early discharge home with little caregiver training calls for provision of community rehabilitation services preferably through domiciliary visits. Caregivers of patients with stroke should be assessed and treated for depression given its high prevalence among this cohort. The referral system between the local community health centres and the discharging hospital need to be strengthened to ensure access to rehabilitation by all patients post discharge from hospital. The referral to social workers during in-patient and out-patient rehabilitation also need to be strengthened to ensure processing of social grants to alleviate financial strain as is appropriate. Caregiver strain is a complex and multifaceted problem with no single causation or solution. As a result, further research is needed to establish the reasons for poor rehabilitation service provision post-stroke for patients and caregivers and find solutions to these. It is important to explore different methods of caregiver education programmes so that the method that yields the best results for both patients and caregivers can be established in our setting and internationally.

Thesis advisor: James Lubben / Thesis advisor: Sara M. Moorman / Every year, more than three million allegations of childhood maltreatment are received by child protective services, many of which involve cases of abuse or neglect inflicted by the victims’ parents. A number of studies found that negative consequences of childhood maltreatment can last for a lifetime. Despite the long-term impact of childhood maltreatment, later-life relationships between adult victims of childhood maltreatment and their abusive parent have rarely been examined. This dissertation aims to address the gap in the literature by examining how adult victims of childhood maltreatment relate to their abusive parent when the parent becomes old and requires long-term care assistance. This three-paper dissertation utilized existing data sources: Wisconsin Longitudinal Study and National Survey of Midlife Development in the United States. The first paper examined the mediating effect of intergenerational solidarity with the aging mother in the association between maternal childhood maltreatment and adult psychological functioning. The second paper used longitudinal data analysis to compare long-term changes in affectual solidarity with aging mothers between adults with a history of childhood abuse and those without. This paper also examined moderating effects of the correlates of childhood abuse (i.e., poor social competency and lack of emotional regulation) in the association between childhood abuse and affectual solidarity with the aging mother. The third paper focused on the caregiving situation in which adult victims of childhood abuse provided care to their abusive parent. This paper investigated whether and how providing care to the abusive parent was associated with psychological distress among abused adult children, and whether self-esteem mediated the association. By revealing the dynamics of later-life relationships between adult victims of childhood maltreatment and their abusive parent, this three-paper dissertation not only contributes to creating new knowledge to the aging literature, but also provides future direction for social work practice and policy. / Thesis (PhD) — Boston College, 2016. / Submitted to: Boston College. Graduate School of Social Work. / Discipline: Social Work.

Thesis advisor: Kathleen McInnis-Dittrich / A vast amount of caregiving literature focuses on the well-being of caregivers of older adults, and is primarily focused on the experiences of caregiving women who have traditionally assumed this role. However, the number of male caregivers is growing related to the increase in the number of older adults requiring care, as well as changing sex roles in the family. It is important to examine the impact caregiving has on men to determine the similarities or differences from women in order to inform social work policy and practice. This dissertation begins to answer the question of whether or not there are differences between male and female caregivers through the completion of a secondary data analysis using the Caregiving in the U.S. Study, 2009, conducted by the National Alliance for Caregiving in collaboration with AARP, and funded by the MetLife Foundation. Women are included in the analyses as a comparison group to the male caregivers to identify what similarities or differences exist in the caregiver's well-being. Ordered logistic regression and logistic regression analyses were used to test if caregiver's age and employment status predicted the well-being of caregivers. Moderation analysis was employed to determine what factors moderated the relationship between the predictors and well-being. Seemingly unrelated regression and Chow tests were used to determine if the impact of caregiving on men was unique or the same as female caregivers. Some key findings included that low-income group caregivers reported greater odds of higher financial hardship and physical strain. Caregiving men reported decreased emotional stress, physical strain, and negative impact on social interaction with others since beginning caregiving compared to females. Caregiving men also sought help from unpaid help (e.g., family and friends) more than female caregivers. With several provisions under the Patient and Protection Affordable Care Act of 2010 centered on addressing caregiver needs, it is an appropriate time to consider how to meet the needs of underserved caregivers. Based on the findings in this dissertation, social work policy and practice recommendations are suggested to address specifically low-income and male caregiver needs. / Thesis (PhD) — Boston College, 2013. / Submitted to: Boston College. Graduate School of Social Work. / Discipline: Social Work.

Visual well-formed hallucinations, fluctuations in the level of cognition, and alertness and extrapyramidal signs are core features of dementia with Lewy bodies. Some patients realize that what they are seeing or hearing are just hallucinations and learn to accept them. Others, however experience these hallucinations as quite real and cannot be dissuaded from the firm belief that they are. In fact, efforts to dissuade them often serve only to confirm the often associated paranoid delusions and this may lead to a catastrophic ending. Hence, it is best not to contradict the patient. Instead, attempts should be made to distract the patient and change the focus of her or his attention. In this case scenario, we present a 68-year-old man who has been diagnosed with dementia with Lewy bodies. He lives with his daughter. He has visual hallucinations and paranoid delusions that worsen at night: He thinks there are people outside the house plotting to kill him. We discuss what went wrong in the patient/caregiver interaction and how the catastrophic ending could have been avoided or averted.

Thesis advisor: Marcie Pitt-Catsouphes / The majority of family caregivers of older adults are also working for pay, and many experience work-family role conflict in managing both work and caregiving responsibilities. Work-family role conflict is associated with poorer psychological and physical health, which interferes with their ability to provide optimal care. Informed by role theory, this dissertation uses a randomized national sample of caregivers of older adults (N=465) to address the relationships between workplace characteristics, workplace flexibility, work-family role conflict, and caregiver stress. While much research has explored the work-family interface, few studies have investigated the workplace characteristics and work-family role conflict exclusively among caregivers of older adults. Additionally, the few studies exploring the relationship between workplace flexibility and stress among caregivers of older adults have yielded inconsistent findings. Results indicate that workplace characteristics associated with work-family role conflict among caregivers of older adults include supervisor support, work overload, work hours, and perceptions of a family-supportive work environment. A significant interaction effect between caregiving frequency (weekly vs. intermittent) indicates that while workplace flexibility is associated with decreased work-family conflict among those providing care intermittently, this association is not found for those providing care on a regular, weekly basis. A second set of analyses limited to regular, weekly caregivers (N=211) finds that work-family role conflict mediates the relationship between workplace flexibility and caregiver stress. This suggests that workplace flexibility may only benefit caregivers when work-family conflict is mitigated or reduced. Workplace flexibility is not associated with stress among caregivers in fair or poor health; caregivers struggling with their own health issues may need additional supports to manage work and family demands. These findings can inform the efforts of policymakers and practitioners working to promote the well-being of family caregivers of older adults. / Thesis (PhD) — Boston College, 2012. / Submitted to: Boston College. Graduate School of Social Work. / Discipline: Social Work.

The research question of this study explores beliefs helping professionals have about caregiving services. The survey provided to participants of this study examined beliefs concerning what services are most important for caregivers to have access to, as well as what are the most significant barriers caregivers may experience when attempting to access or receive such services. Findings from this study indicate that the most important respite care services for caregivers to have access to include overnight/weekend care, access to short breaks and socialization, access to training/education, and support with providing activities of daily living for the care recipient. Findings from this study also indicate the most significant barriers to caregivers accessing or receiving services are misgivings about trusting another individual with the care of a loved one, feeling overwhelmed, and not being adequately prepared for the responsibilities of being a caregiver at discharge from a hospital setting. It is important for Social Work practitioners to be aware of the respite needs of caregivers, as well as potential barriers to accessing services that would help to address those needs.