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Description
Using interpretative phenomenological analysis (IPA), a qualitative research method, combined with quantitative data, this study was designed to examine what it means to be an adolescent living with muscular dystrophy, a life-limiting disease. A sample of twelve adolescents with Duchenne (eight), limb-girdle (two), and friedreich's ataxia (two) as subsets of

Using interpretative phenomenological analysis (IPA), a qualitative research method, combined with quantitative data, this study was designed to examine what it means to be an adolescent living with muscular dystrophy, a life-limiting disease. A sample of twelve adolescents with Duchenne (eight), limb-girdle (two), and friedreich's ataxia (two) as subsets of muscular dystrophy were interviewed one-on-one, as were their parent or adult guardian. Interviews consisted of 16 opened-ended questions for adolescents, and 17 open-ended questions for parents or guardians. Participants also completed a pre-interview online survey consisting of 38 closed-ended questions using a Likert-type scale to gather demographic and treatment information. The focus of these interviews included peer relationships, self-concepts, and family dynamics in the lives of adolescents with muscular dystrophy. Each of these categories was examined in relation to participants' processes of making meaning of their experiences. It was discovered that parent and child attitudes towards disability run parallel, whether that be positive, negative, or neutral in regards to quality of life with a disability. It was also determined that at least one parent must be a stay-at-home job or be able to work from home in order to be the caliber of caregiver required for their child. Adolescents in this study all had a strong support system in place, with the predominant support system being their family. Self-reports on whether or not adolescents worried about how their muscular dystrophy affected their families were split. Families planned activities within their family unit by utilizing a complete activity inclusion approach, separate opportunities for siblings approach, or activity elimination approach. Regardless of level of family support, it was found that the majority of adolescents in this sample try not to think about muscular dystrophy, or have neutral feelings towards these thoughts. They also thought that people who do not have muscular dystrophy do not know what it is like to live with this disease, and felt neutrally towards the way that they look. Medically speaking, the majority of adolescents reported feeling neutral towards the support that they receive from their medical providers, and that their providers do not talk directly to them but rather to the rest of their family or caregiver instead. These adolescents could not manage their own medical needs and their medical appointments were made by a parent or other type of caregiver. A strong misperception that a physical disability also signals the presence of an intellectual disability when at school was evident. Adolescents were also quick to point out the social stigma that comes with having the assistance of an aid at school with able-bodied peers. However, a small few, particularly those younger in age, reported a lack of peer stigma, and even the social benefit of having an adult friend at school. While the Muscular Dystrophy Association is trusted in coordinating patient care, their treatment advisements are perceived to be outdated, and Goodwill Ambassador program considered manipulative by patients. Application to the Muscular Dystrophy Association (MDA) Transitions Program are named so that the organization formerly relied upon most to serve these families and who has a program designed to serve this exact population can benefit from them. With zero families interviewed having heard of or utilized this program, a clear change in their programs and practices need to take place. The information gathered from this study provides insight for developing and to guide new programs to assist this population in making the difference the MDA Transitions Program aims to do.
ContributorsBlotner, C (Author) / Spinrad, Tracy (Thesis director) / Seeley, Bridget (Committee member) / Brougham, Jennifer (Committee member) / Sanford School of Social and Family Dynamics (Contributor) / Barrett, The Honors College (Contributor)
Created2016-12
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Description
Equal access to community facilities and resources is vital to the educational development of children. Yet, many times community programs and activities are not appropriately adapted for children with disabilities. This thesis project explored how public library spaces and programs can be adapted to become more accessible for children with

Equal access to community facilities and resources is vital to the educational development of children. Yet, many times community programs and activities are not appropriately adapted for children with disabilities. This thesis project explored how public library spaces and programs can be adapted to become more accessible for children with special needs. Forty-one library youth staff members were surveyed to understand their training needs and inform the development of a professional workshop. In partnership, Arizona State University and Scottsdale Public Library System created a professional development training to educate library youth staff on cultural responsivity. One component of the training, "Creating Safe Library Spaces for Children with Special Needs," was developed to teach library youth staff about techniques for ensuring equal educational opportunities for all children in libraries. Sixteen library staff members participated in the training and were asked to complete a post-workshop survey evaluating their satisfaction and perceived usefulness of the training.
ContributorsFessenden, Wyatt J. (Author) / Taylor, Michelle (Thesis director) / Gaias, Larissa (Committee member) / Sanford School of Social and Family Dynamics (Contributor) / College of Integrative Sciences and Arts (Contributor) / Barrett, The Honors College (Contributor)
Created2016-12
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Description

Due to the Covid-19 pandemic, healthcare professionals including occupational therapy practitioners (OTPs) were required to transition to working utilizing an online-service delivery model called telehealth. The use of telehealth for occupational therapy (OT) sessions was limited prior to the pandemic, and this shift required OTPs to provide services in ways

Due to the Covid-19 pandemic, healthcare professionals including occupational therapy practitioners (OTPs) were required to transition to working utilizing an online-service delivery model called telehealth. The use of telehealth for occupational therapy (OT) sessions was limited prior to the pandemic, and this shift required OTPs to provide services in ways many had never experienced. The purpose of this study was to identify how the transition to telehealth impacted OTPs and their ability to provide proper care to the pediatric population via telehealth. The final analytic sample included 32 female OTPs who worked with the pediatric population. Results from qualitative and quantitative analyses showed that OTPs had positive feelings toward using telehealth and that the telehealth modality had a moderate impact on their job performance. The areas that pediatric OTPs want to be addressed included technology and internet issues, lack of parent involvement, decreased quality of care, inaccessibility of materials, decreased attention span and increased distractions, and lack of general knowledge about telehealth among clients, parents, and professionals. Despite these drawbacks, a positive theme emerged that the telehealth model is good for current circumstances. The results show telehealth is a positive experience for OTPs and allows OT to be more accessible to their clients. Implications for increasing education for healthcare professionals, clients, and parents/guardians to make telehealth accessible to clients on a large scale are discussed.

ContributorsMulvaney, Kaitlin Marie (Author) / Bryce, Crystal (Thesis director) / Seeley, Bridget (Committee member) / Sanford School of Social and Family Dynamics (Contributor) / Department of Psychology (Contributor) / Barrett, The Honors College (Contributor)
Created2021-05
Description

The United States houses only five percent of the world’s population but over 20% of its prison population. There has been a dramatic increase in carceral numbers over the last several decades with much of this population being people with mental illness designations. Many scholars attribute this phenomenon to the

The United States houses only five percent of the world’s population but over 20% of its prison population. There has been a dramatic increase in carceral numbers over the last several decades with much of this population being people with mental illness designations. Many scholars attribute this phenomenon to the process of deinstitutionalization, in which mental health institutions in the U.S. were shut down in the 1950s and ‘60s. However, disability scholar Liat Ben-Moshe argues that this is a dangerous oversimplification that fails to credit the deinstitutionalization movement as an abolitionist movement and to take into account shifting demographics between institutions and prisons/jails. This study considers how mass incarceration in the U.S. stems from a trend of isolating and punishing BIPOC and people with disabilities at disproportionate rates as it explores lived experiences at the intersection of mental health and incarceration. Findings inform an abolitionist agenda by highlighting the near impossibility of rehabilitation and treatment in an inherently traumatizing space.

ContributorsGerkin, Alyssa (Author) / Kirsch-Stancliff, Willa (Co-author) / Henson, Abigail (Thesis director) / Bebout, Lee (Committee member) / DeMarse, Angela (Committee member) / Barrett, The Honors College (Contributor) / School of Criminology and Criminal Justice (Contributor) / School of Social Transformation (Contributor) / School of Human Evolution & Social Change (Contributor)
Created2023-05
Description

The United States houses only five percent of the world’s population but over 20% of its prison population. There has been a dramatic increase in carceral numbers over the last several decades with much of this population being people with mental illness designations. Many scholars attribute this phenomenon to the

The United States houses only five percent of the world’s population but over 20% of its prison population. There has been a dramatic increase in carceral numbers over the last several decades with much of this population being people with mental illness designations. Many scholars attribute this phenomenon to the process of deinstitutionalization, in which mental health institutions in the U.S. were shut down in the 1950s and ‘60s. However, disability scholar Liat Ben-Moshe argues that this is a dangerous oversimplification that fails to credit the deinstitutionalization movement as an abolitionist movement and to take into account shifting demographics between institutions and prisons/jails. This study considers how mass incarceration in the U.S. stems from a trend of isolating and punishing BIPOC and people with disabilities at disproportionate rates as it explores lived experiences at the intersection of mental health and incarceration. Findings inform an abolitionist agenda by highlighting the near impossibility of rehabilitation and treatment in an inherently traumatizing space.

ContributorsKirsch-Stancliff, Willa (Author) / Gerkin, Alyssa (Co-author) / Bebout, Lee (Thesis director) / Cisneros, Milagros (Committee member) / Barrett, The Honors College (Contributor) / School of Social Transformation (Contributor) / Department of English (Contributor) / Historical, Philosophical & Religious Studies, Sch (Contributor) / School of International Letters and Cultures (Contributor)
Created2023-12
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Description

Honors colleges are recognizing the need for diversity in their student populations and are taking steps toward that end. However, disabled students are still underrepresented in honors collegiate student bodies. Through a series of open-ended questions posed to thirty-five students enrolled in Barrett, the Honors College at Arizona State University,

Honors colleges are recognizing the need for diversity in their student populations and are taking steps toward that end. However, disabled students are still underrepresented in honors collegiate student bodies. Through a series of open-ended questions posed to thirty-five students enrolled in Barrett, the Honors College at Arizona State University, this study will examine how experiences with family, school personnel, and peers during their grade school (K-12) years effect a student’s choice to enroll in an honors college. This study will briefly explore how the intersection of factors such as race/ethnicity, sex, gender, and disability impacted these experiences. Finally, implications for collegiate honors programs and for grade school teachers and the families of children with disabilities will be discussed. Areas for future research will be considered.

ContributorsBowe, Emily (Author) / Kappes, Janelle (Thesis director) / Panneton, Teresa (Committee member) / Barrett, The Honors College (Contributor) / Sanford School of Social and Family Dynamics (Contributor) / Division of Teacher Preparation (Contributor)
Created2022-05
Improving Physical Accessibility at Arizona State University: A Student Perspective
Description
In an analysis of federal ADA law, we find that the ADA—the law that protects disabled people from exclusion in public spaces—has a fundamental inefficiency: the only way to fix accessibility issues under the ADA is to file a civil or Department of Justice (DOJ) lawsuit. This challenge leads to

In an analysis of federal ADA law, we find that the ADA—the law that protects disabled people from exclusion in public spaces—has a fundamental inefficiency: the only way to fix accessibility issues under the ADA is to file a civil or Department of Justice (DOJ) lawsuit. This challenge leads to the perpetuation of inaccessibility and accessibility problems in public settings. To examine this issue on the Arizona State University Tempe (ASU Tempe) campus, I walked through 55 ASU Tempe classroom and research buildings and compiled a list of each accessibility problem present; I created digital floor plans detailing the location of each accessibility concern; and I worked with ASU professionals—such as Arizona State’s Coordinator of Accessibility (ADA) Compliance and professional staff at the Disability Resource Center—to remedy these accessibility issues. Through my research, I identified two areas of improvement regarding accessibility at ASU Tempe: the need for a streamlined tracking and fixing process of accessibility problems on-campus; and the need for an easy-to-access online form where students can report accessibility issues on-campus. I also discovered that despite the problems that need to be addressed, ASU’s professionals are committed to accessibility compliance compared to other institutions. However, despite the commitment from ASU professionals, as well as the ASU charter stating that “[ASU] is ...measured not by whom it excludes, but by whom it includes and how they succeed,” expansion of accessibility for students with physical disabilities on the ASU Tempe campus remains a needed area of change. This will ultimately promote equal educational opportunity for all students, regardless of ability. Furthermore, accessibility involves a continual process of assessment and improvement in spite of budgetary limitations and widespread disability stigmatization.
ContributorsSaunders, Mackenzie Rose (Author) / Oliverio, Annamaria (Thesis director) / Delaney, Shanna (Committee member) / School of Social Transformation (Contributor, Contributor) / School of Politics and Global Studies (Contributor) / Barrett, The Honors College (Contributor)
Created2020-05
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Description
Libraries have historical and contemporary importance as public spaces that serve a purpose beyond storing books. In our thesis project, we wanted to ensure that the ASU Library was fulfilling this role for our student community. Based on a survey of 136 members of the Arizona State University community regarding

Libraries have historical and contemporary importance as public spaces that serve a purpose beyond storing books. In our thesis project, we wanted to ensure that the ASU Library was fulfilling this role for our student community. Based on a survey of 136 members of the Arizona State University community regarding accessibility of the Libraries, the results found that the ASU Library system could benefit from more accessible and digital content and programming. In response to our findings, we created a digital book display which highlighted resources about critical disability studies, the importance of community spaces and libraries in particular, as well as information about universal design. This book display serves as an example of what the future of book displays could be and how to create inclusive spaces in the university Library system. Access the project here: https://libguides.asu.edu/BeyondBooks
ContributorsGolding, Carly A (Co-author) / Juarez, Alexis (Co-author) / Oliverio, Annamarie (Thesis director) / Gohr, Michelle Ashley (Committee member) / School of Social Transformation (Contributor, Contributor) / Watts College of Public Service & Community Solut (Contributor) / Barrett, The Honors College (Contributor)
Created2020-12