Quality of life for Alaskan individuals with FASD and their families

Thesis (Ph.D.) University of Alaska Fairbanks, 2019Fetal alcohol spectrum disorder (FASD) is a lifelong disability caused by prenatal exposure to alcohol. The effects of FASD include a range of physical, mental, behavioral, and learning disabilities. These disabilities impact quality of life, not only for the affected individual, but for family members. The effects from FASD ripple into schools, the correctional system, and throughout rural and urban communities. Although there are no reliable statistics available on FASD in Alaska, many professionals in the field believe Alaska to have the highest rate of FASD in the United States. This research has explored the ways in which prenatal exposure to alcohol affects quality of life for Alaskan individuals and their families. For this study, I have defined quality of life as the multi-faceted evaluation of the individual's personal experiences and life satisfaction, including health, psychological and social indicators. Since the identification of fetal alcohol syndrome (FAS) and FASD, many studies have analyzed the effects of prenatal alcohol exposure, as well as possible interventions. Few studies have investigated how prenatal alcohol exposure affects the individual's quality of life and even fewer studies have analyzed how raising one or more children with FASD affects the family. To address the gap in the literature, this research applied social constructivist theory and employed a qualitative design, using semi-structured interviews to explore individuals' and parents' life stories and perceptions on how FASD has affected their lives. I interviewed eight individuals with FASD and 14 adoptive or long-term foster parents. Findings indicate that FASD impacts almost every facet of the lives of both the individuals affected and their families. All individuals with FASD interviewed for this project suffered serious adverse childhood experiences in addition to their prenatal exposure to alcohol. All encountered academic and social difficulties at school. Individuals struggled in their transitions to adulthood, with some individuals needing assistance from parents or social services throughout their lifespan. Parents expressed their ongoing need for structure within the home and the continual need to advocate for suitable services for their children. They described how the ongoing stress of raising their child(ren) with FASD affected their social lives, employment and even their marriages. The perspectives and insight of these individuals with FASD and their parents can provide other family members, service providers and legislators a better understanding of how FASD affects quality of life and assist decision makers in making informed choices on how to best provide expanded or improved supportive services to these individuals and families whose everyday struggles go largely unrecognized by the general public

Interview with Edward Ed Harris, Brenda Dow, and Sylvester King

In May of 2013 Mr. Edward Harris sat down and discussed his brother, Herman K. Harris, who was a part of the freedom riders. Mr. Harris also discusses his military service and his tour of duty in Vietnam. This interview was conducted for inclusion into the Louise Pettus Archives and Special Collections Oral History Program.https://digitalcommons.winthrop.edu/oralhistoryprogram/1118/thumbnail.jp

Observations of the Gas Reservoir around a Star Forming Galaxy in the Early Universe

We present a high signal-to-noise spectrum of a bright galaxy at z = 4.9 in 14 h of integration on VLT FORS2. This galaxy is extremely bright, i_850 = 23.10 +/- 0.01, and is strongly-lensed by the foreground massive galaxy cluster Abell 1689 (z=0.18). Stellar continuum is seen longward of the Ly-alpha emission line at ~7100 \AA, while intergalactic H I produces strong absorption shortward of Ly-alpha. Two transmission spikes at ~6800 Angstroms (A) and ~7040 A are also visible, along with other structures at shorter wavelengths. Although fainter than a QSO, the absence of a strong central ultraviolet flux source in this star forming galaxy enables a measurement of the H I flux transmission in the intergalactic medium (IGM) in the vicinity of a high redshift object. We find that the effective H I optical depth of the IGM is remarkably high within a large 14 Mpc (physical) region surrounding the galaxy compared to that seen towards QSOs at similar redshifts. Evidently, this high-redshift galaxy is located in a region of space where the amount of H I is much larger than that seen at similar epochs in the diffuse IGM. We argue that observations of high-redshift galaxies like this one provide unique insights on the nascent stages of baryonic large-scale structures that evolve into the filamentary cosmic web of galaxies and clusters of galaxies observed in the present universe.Comment: Accepted for publication in ApJL (corrected typos

The impact of elder abuse training on subacute health providers and older adults: Study protocol for a randomized control trial

Background: Elder abuse often goes unreported and undetected. Older people may be ashamed, fearful, or otherwise reticent to disclose abuse, and many health providers are not confident in asking about it. In the No More Shame study, we will evaluate a co-designed, multi-component intervention that aims to improve health providers’ recognition, response, and referral of elder abuse. Methods: This is a single-blinded, pragmatic, cluster randomised controlled trial. Ten subacute hospital sites (i.e. clusters) across Australia will be allocated 1:1, stratified by state to a multi-component intervention comprising a training programme for health providers, implementation of a screening tool and use of site champions, or no additional training or support. Outcomes will be collected at baseline, 4 and 9 months. Our co-primary outcomes are change in health providers’ knowledge of responding to elder abuse and older people’s sense of safety and quality of life. We will include all inpatients at participating sites, aged 65 + (or aged 50 + if Aboriginal or Torres Strait Islander), who are able to provide informed consent and all unit staff who provide direct care to older people; a sample size of at least 92 health providers and 612 older people will provide sufficient power for primary analyses. Discussion: This will be one of the first trials in the world to evaluate a multi-component elder abuse intervention. If successful, it will provide the most robust evidence base to date for health providers to draw on to create a safe environment for reporting, response, and referral. Trial registration: ANZCTR, ACTRN12623000676617p. Registered 22 June 2023

A design thinking approach to evaluating interprofessional education

The complex challenge of evaluating the impact of interprofessional education (IPE) on patient and community health outcomes is well documented. Recently, at the Radcliffe Institute for Advanced Study in the United States, leaders in health professions education met to help generate a direction for future IPE evaluation research. Participants followed the stages of design thinking, a process for human-centred problem solving, to reach consensus on recommendations. The group concluded that future studies should focus on measuring an intermediate step between learning activities and patient outcomes. Specifically, knowing how IPE-prepared students and preceptors influence the organisational culture of a clinical site as well as how the culture of clinical sites influences learners' attitudes about collaborative practice will demonstrate the value of educational interventions. With a mixed methods approach and an appreciation for context, researchers will be able to identify the factors that foster effective collaborative practice and, by extension, promote patient-centred care

The impact of elder abuse training on subacute health providers and older adults: study protocol for a randomized control trial

Abstract Background Elder abuse often goes unreported and undetected. Older people may be ashamed, fearful, or otherwise reticent to disclose abuse, and many health providers are not confident in asking about it. In the No More Shame study, we will evaluate a co-designed, multi-component intervention that aims to improve health providers’ recognition, response, and referral of elder abuse. Methods This is a single-blinded, pragmatic, cluster randomised controlled trial. Ten subacute hospital sites (i.e. clusters) across Australia will be allocated 1:1, stratified by state to a multi-component intervention comprising a training programme for health providers, implementation of a screening tool and use of site champions, or no additional training or support. Outcomes will be collected at baseline, 4 and 9 months. Our co-primary outcomes are change in health providers’ knowledge of responding to elder abuse and older people’s sense of safety and quality of life. We will include all inpatients at participating sites, aged 65 + (or aged 50 + if Aboriginal or Torres Strait Islander), who are able to provide informed consent and all unit staff who provide direct care to older people; a sample size of at least 92 health providers and 612 older people will provide sufficient power for primary analyses. Discussion This will be one of the first trials in the world to evaluate a multi-component elder abuse intervention. If successful, it will provide the most robust evidence base to date for health providers to draw on to create a safe environment for reporting, response, and referral. Trial registration ANZCTR, ACTRN12623000676617p . Registered 22 June 2023