Thesis (M.S.)--University of Michigan, 1976.

Thesis (M.S.)--University of Michigan, 1976.

Serving children with special health care needs (SHCN) or developmental disabilities (DD) and their families is an important public health issue (Healthy People, 2020). The prevalence of children with special health care needs or developmental disabilities is significant and increasing (Boyle et al., 2011). Caregivers of children with SHCN or DD and their families demand clinical and research attention given the potential range of health and well-being outcomes that are associated with their children’s developmental or medical complexity. The purpose of this dissertation study was to use a quantitative descriptive research design to examine the experiences of pediatric parenting stress and family support for a sample of caregivers of children representing diverse special health care needs or developmental disabilities. Data were collected at four agencies that provide a range of services to children with SHCN or DD and their families. The data for 167 caregiver participants were used for the preliminary and main statistical analyses. Statistical analyses including pearson product moment correlations, independent-samples t-tests, one-way analysis of variance (ANOVA) tests, internal consistency reliability analyses, and factor analyses. Present study findings revealed that (a) the Pediatric Inventory for Parents (PIP) and Family Support Scale (FSS) measures did not appear to be internally consistent for this study sample; (b) the existing PIP and FSS factor structures did not fit the present study data well; (c) the present study sample had higher levels of pediatric parenting stress and lower levels of family support overall as compared to previous study samples of caregivers for children with chronic conditions; (d) the current study sample’s experiences of pediatric parenting stress and family support differed significantly by several caregiver, child, and family correlates; and (e) the current study sample’s levels of pediatric parenting stress and family support had a positive, significant association. Study findings emphasized the potential roles of stress and support in the caregiving experiences for children with SHCN or DD. Recommendations for further study of this caregiving population and their families are discussed.

This dissertation focuses on the health, health care utilization rates, and unmet health care needs of individuals aging with work-related impairments. A life course perspective is used to understand the health experiences of these individuals, and a mixed method approach was used to study their health and health care use. Three components make up the dissertation, two quantitative projects and one qualitative project. The first article provides a broad overview of chronic health conditions reported by respondents from the Research Action Alliance on the Consequences of Work Injury (RAACWI) Health and Health Care Utilization Survey who experienced a work-related impairment. Health outcomes and access to health care for this group is compared to a similar aged sample of Ontarian respondents from the Canadian Community Health Survey. The second article uses the National Population Health Survey to examine whether rates of unmet health care needs over eight cycles varied based on disability status. Respondents are categorized as either without disability, having a work-related disability, having a disability as a result of a disease or illness, or having disability for other reasons. The reasons for unmet health care needs is examined for seven cycles to determine whether unmet health care need could be characterized as personal or structural. The third article provides a deeper understanding of how 11 individuals age with a work injury. A convenience sample of 11 participants from the RAACWI Health Survey participated in semi-structured, in-depth interviews where they discussed their work injury and how they are coping with its ongoing consequences, including subsequent health problems as they age. This article provides a richer understanding of health changes and unmet health care needs that could not be examined in the other projects due to the nature of quantitative analysis. Together these three articles enable me to showcase the lived experiences of individuals with work-related impairments and how they age with the work injury and subsequent, additional chronic health conditions. / Dissertation / Candidate in Philosophy

Background: Health care transition (HCT) for adolescents and emerging adults (AEA) with special health care needs is an emerging field of interdisciplinary field of practice and research that is based upon an intergenerational approach involving care coordination between pediatric and adult systems of health care. Informed understanding of the state of the HCT science pertaining to this group of providers is needed in order to develop and implement service programs that will meet the comprehensive needs of AEA with special health care needs. Methods: The authors conducted a systematic review of the literature on the transition from child to adult care for adolescents and emerging adults (AEA) with special health care needs from 2004 to 2013. Fifty-five articles were selected for this review. An adaptation of the PRISMA guidelines was applied because all studies in this review used descriptive designs. Results: Findings revealed lack of evidence due to the limitations of the research designs and methodology of the studies included in this systematic review. Study findings were categorized the following four types: adult provider competency, provider perspectives, provider attitudes, and HCT service models. The discipline of medicine was predominant; interdisciplinary frameworks based upon integrated care were not reported. Few studies included samples of adult providers. Conclusions: Empirical-based data are lacking pertaining to the role of providers involved in this specialty area of practice. Evidence is hampered by the limitations of the lack of rigorous research designs and methodology.

Background: A better understanding of the needs of adolescents and emerging adults with special health care needs (AEA-SHCNs) is essential to provide health care transition services that represent best practices. The purpose of this systematic review was to evaluate the research on health care transition for AEA-SHCNs from their perspectives. Methods: A comprehensive literature review of research publications since 2005 was performed using the PubMed, Cumulative Index to Nursing and Allied Health Literature, and EBSCO databases. Thirty-five studies met the final review criteria. Results: The process of transition from child to adult for AEA-SHCNs is complex. Individuals experiencing the transition desire to be a part of the process and want providers who will listen and be sensitive to their needs, which are often different from others receiving health care at the same facility. Conclusions: More research that considers the voice of the AEA-SHCNs related to transition from pediatric to adult care is needed.

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