Pediatric obsessive-compulsive disorder (OCD) is a heterogeneous disorder associated with functional impairment and deleterious effects at the family level. Caregivers are often enmeshed in the disorder, coping with the child’s OCD-related distress and engaging in accommodating behaviors. Given the developmental level of these youth and the impactful nature of OCD, caregivers may experience considerable burden and decreased quality of life (QoL). However, extant literature on these constructs is largely limited to caregivers of patients with chronic illnesses, and the few existing studies examining OCD samples are limited to adult patients. As such, this study sought to examine burden and QoL in caregivers of youth enrolled in an intensive outpatient or partial hospitalization program for their severe OCD. Specifically, the relationships between caregiver QoL and burden and the following variables were investigated: OCD symptom severity, functioning (youth functional impairment, general family functioning), family (family accommodation, parental relationship satisfaction, positive aspects of caregiving), and comorbid psychopathology (caregiver anxiety and depressive symptoms, youth internalizing and externalizing behaviors). Seventy-two child and caregiver dyads participated in the study and completed a battery of clinician- and self-rated questionnaires. Different components of caregiver QoL correlated with caregiver-rated functional impairment, family accommodation, youth externalizing behaviors, and caregiver psychopathology. Various aspects of caregiver burden correlated with OCD symptom severity, functional impairment related to OCD, as well as caregiver and child comorbid psychopathology. Caregiver depressive symptoms predicted caregiver QoL, and caregiver depressive symptoms and child externalizing symptoms both predicted caregiver burden. Caregiver burden did not mediate the relationship between obsessive-compulsive symptom severity and caregiver QoL. Ultimately, elucidating factors associated with increased caregiver burden and poorer QoL are pertinent for the identification of at-risk families and development of targeted interventions.

Cerebral palsy is a neurodevelopmental condition that severely impedes a child?s development. Many children with this developmental disorder may have complex limitations in self-care functions which renders them completely reliant on their caregivers. This study explores the experiences of kinship caregivers of children with cerebral palsy. The study has been based on the concern that despite extensive research on the experiences of caregivers caring for children with cerebral palsy, little research has been conducted about the experiences of kinship caregivers who care for children with this developmental disorder in a Botswana context. The aim of this research has been to understand the experiences of kinship carers who care for children with cerebral palsy in Mahalapye, Botswana. The researcher had adopted a qualitative exploratory approach. Non-probability purposive sampling and volunteer sampling had been utilised to select the research participants. Qualitative data had been collected by utilising one-to-one semi-structured interviews. A total sample of 12 participants had been drawn from the pool of caregivers of children between the ages of six and twelve who have been diagnosed with cerebral palsy and who reside in the Mahalapye Village. The study findings show that caring for a child with cerebral palsy exposes kinship caregivers to many challenges such as burden of care, impaired health, poverty and stigmatisation. Some of these challenges are attributed to the child?s disability while some are due to insufficient services provided to caregivers. However, acceptance of the child, religious beliefs and the supportive role played by family members enable the caregivers to adapt to life with a child diagnosed with cerebral palsy. The study concludes that challenges faced by kinship caregivers raising children with cerebral palsy in Botswana is aggravated by inadequate intervention programmes and services that could assist caregivers and disabled children, despite a firm and comprehensive national policy on care for people with disabilities. The intervention care programme should bestow more focus on recognising caregivers? challenges and removing such obstacles by providing effective services. A support programme that could ensure continuity of care will benefit caregivers by assisting them in adapting. The study suggests that programmes that have been designed to enhance identified family resilience quality, which help families to adapt following the diagnosis of cerebral palsy of a child, should be implemented. / Mini Dissertation (MSW)--University of Pretoria, 2017. / Social Work and Criminology / MSW / Unrestricted

Over the course of the past few decades, first-generation college students have been analyzed from many angles. With research ranging from quantitative reviews of lower graduation and retention rates, as well as higher attrition rates (Engle & Tinto, 2008; Inman & Mayes, 1999; Terenzini et al., 1996; Tinto, 1975), to qualitative case studies focusing on the psychological aspects of preparation, parental support, and identity formation (Lara, 1992; London, 1989; Rendón, 1992; Rodriguez, 1975 1982; Skinner & Richardson, 1988; Weis, 1985), this population has been well documented across a spectrum of research methodologies. More recently, scholarly attention has shifted toward a more individualized approach, focusing on smaller cohorts within the larger first-generation college student population (Collier & Morgan, 2008; Covarrubias et al., 2019; McCoy, 2014; Phinney & Haas, 2003). The goal of this three-article dissertation is to highlight and prioritize first-generation college students’ voices and narratives by emphasizing their lived experiences, as well as reviewing the support services currently available to them. This goal is addressed using three distinct, yet interconnected articles all utilizing different research methodologies. The first article, a phenomenological case study, addressed the experiences of six female first-generation college student caregivers (Orbe, 2004; Pyne & Means, 2013; Covarrubias et al., 2019) at a large, prestigious, research-driven institution in the Northeast. The second study, a singular, narrative case study, utilized the construct of intersectionality (Crenshaw, 1994; Pyne & Means, 2013) to examine the experiences of a female, first-generation college student caregiver of color as she navigated the higher education system. The last article, a comparative case study, examined the available first-gen support programming at three institutions in the same metropolitan area. This final study also included administrator perspectives about what is required to implement and execute first-generation college student support initiatives. The major implications of this dissertation project include the following: a strong recommendation for increased intersectionality in all first-gen support programming; a discovery of the causational relationship of being a first-gen caregiver and the added difficulty that multi-layered identity creates; a demonstration of the need to motivate and utilize collected student data in order to inform first-gen program creation; and a recognition of the stressors placed on certain campus stakeholders and the need for enhanced cross-campus collaboration to improve first-generation college student support. Future research and specific recommendations for the field of higher education are discussed.

Thesis advisor: Pamela J. Grace / Background: Advances in clinical care over the past 40 years have saved the lives of many infants who previously would not have survived. However, a substantial proportion of these children need on-going technological support and are cared for at home by family caregivers with or without the assistance of home care services. Existing studies describe the experience of family caregivers of technology-dependent children post-discharge, but there is a gap in knowledge related to caregivers’ perceptions of nurse-led discharge teaching. Purpose: To describe caregivers’ perceptions of nurse-led discharge education designed to prepare them to care for their technology-dependent infant in the home setting and to uncover factors that facilitate or hinder its effectiveness. Method: A qualitative descriptive study design was employed to explore caregivers’ perceptions of nurse-led discharge education efforts. Demographic data was collected prior to conducting a semi-structured interview. Interview data were analyzed in an iterative fashion using qualitative content analysis. Sample Recruitment was via purposive sampling aimed to find caregivers of technology-dependent infants under the age of three. Nine participants completed the study. Results: An overarching theme, caregiver learning and self-advocacy is enhanced by positive nurse/caregiver relationships and team cohesion, especially during anxiety-producing transitions in care, emerged from the data. The overarching theme encompasses five major themes and several major themes. The five main themes are: the nurse/caregiver relationship enhances learning; the complexity of care presents challenges to the learning process; team performance affects caregivers’ level of anxiety/uncertainty; caregivers’ level of expertise improves self-advocacy; and transitions in care settings contribute to caregiver anxiety. Conclusion: Insights that contribute to nursing knowledge of the caregivers’ experience of nurse-led discharge education and their perceptions of factors that help or hinder their learning were gained. Implications for nursing include the importance of caregivers’ involvement in care team discussions, the necessity of basing teaching approaches and materials in knowledge of best practices, and improved care coordination and discharge planning. Further nursing research, that can generalize findings and generate interventions is also needed to improve the care of this population. / Thesis (PhD) — Boston College, 2018. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

<p>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.</p>

The impact of raising a child with autism spectrum disorder (ASD) is frequently accompanied by elevated caregiver stress. Examining the variables that predict these elevated rates will help us understand how caregiver stress is impacted by and impacts child behaviors. This study explored how restricted and repetitive behaviors (RRBs) contributed concurrently and longitudinally to caregiver stress in a large sample of preschoolers with ASD using parallel process multilevel growth models. Results indicated that initial rates of and change in RRBs predicted fluctuations in caregiver stress over time. When caregivers reported increased child RRBs, this was mirrored by increases in caregiver stress. Our data support the importance of targeted treatments for RRBs as change in this domain may lead to improvements in caregiver wellbeing.

Background The trajectory of recovery after sepsis varies. Survivors may have considerable ongoing limitations, requiring a caregiver for a prolonged period. Objectives To learn about experiences, quality of life, coping, resilience, and social support of caregiver caring for survivors of sepsis. Methods We conducted a convergent mixed-methods study, recruiting informal caregivers of patients who had survived sepsis in the past year and were readmitted to the intensive care unit with sepsis. Individual face-to-face, semistructured interviews and validated surveys on quality of life, coping, caregiver burden, resilience, and social support were administered to caregivers. Interview transcripts were analyzed using content analysis. Surveys were scored and summarized using descriptive statistics. Results Caregivers were primarily middle-aged, White, and female. Half were spouses of their care recipient. Caregivers reported some deficits in mobility, pain, and anxiety/depression. Coping styles varied, with engaged coping being more prevalent. Most caregivers reported mild to moderate burden, all reported either normal or high resilience levels, and types of social support were similar. However, interviews and survey findings were not always consistent. Major themes that emerged from the analysis included (1) advocating for and protecting their loved one, (2) coping with caregiving, (3) uncertain future, (4) rewards of caregiving, and (5) need to optimize communication with family. Discussion Caregivers of sepsis survivors are protective of their care recipient and use a variety of strategies to advocate for their loved one and to cope with the uncertainty involved in a new intensive care unit admission. More advocacy and support are needed for this population.

京都大学 / 0048 / 新制・課程博士 / 博士(人間健康科学) / 甲第18202号 / 人健博第19号 / 新制||人健||2(附属図書館) / 31060 / 京都大学大学院医学研究科人間健康科学系専攻 / (主査)教授 荒井 秀典, 教授 十一 元三, 教授 中山 健夫 / 学位規則第4条第1項該当 / Doctor of Human Health Sciences / Kyoto University / DFAM

There is a growing phenomenon in a sector of the United States population where senior citizens and disabled persons that are deemed as homebound are becoming increasingly dependent on their caregivers and as a result, they are experiencing an evolving disconnection from their occupational identity. The problem being considered is that as older adults become homebound, they begin to receive support services for assistance with self-care and home management. From this, the experience of the homebound consumer reducing engagement in necessary tasks in the home causes a decline in functional abilities which then reduces engagement in portions of the functional tasks that they may still possess the skills to participate in safely. To address this issue, research has explored how function and restorative based training for caregivers can improve quality of life, health, and function, as well as reduce health care costs. The Home Able program is a caregiver training program designed to promote occupational engagement for persons living in the community in private residences. This program has been developed as an evidence-based health promotion program designed to increase physical and mental health of persons that are homebound. The format of the program will include individual and group format training for state funded caregivers on the positive health impact of occupational engagement. Then, homebound consumers who are participants in the Home Able program will receive a series of six weekly in-home sessions focusing on identification of barriers that are impeding participation in meaningful functional activities in the home and education on compensatory strategies that can be implemented for the homebound consumer to achieve participation in meaningful occupations. A research project has also been developed to coincide with program implementation to determine how participation in the Home Able Program will impact fear of falling, depression and self-perceived quality of life. The design of the study with compare the homebound consumer’s fear of falling, depression and self-perceived quality of life using standardized measurement tools prior to program participation, and after completion of the Home Able program. The results of this research project will help substantiate the positive health impact on functional mobility, mental health and enrollment in the Home Able program to help foster buy-in from local and national stakeholders.

Individuals who live with depressed partners have increased rates of anxiety, depression, and difficult coping. They experience greater burdens of parenting and financial responsibilities, and often feel isolated and restricted. Much of this is similar to what has been termed caregiver burden in the context of other illnesses. This study used qualitative interviews to explore the day-to-day experience of what it is like to live with a depressed partner, as well as to test the fit of the term `caregiver burden' in the context of depression. Participants were seven individuals who were in long-term relationships with depressed partners. Analysis of the interviews identified four stages of a helping process that individuals go through as they care for their depressed partners and transition from partners to caregivers. These individuals are experts on their partners and have important perspective and essential support to offer when their depressed partners are seeking care. Findings underline the importance of advanced nursing and medical care that recognizes the significant burden that nondepressed partners experience and the important ways that they can help their depressed partners seek and stay with treatment.