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Full-Text Articles in Medicine and Health

Recent Trends, Current Research In Cyberpsychology: A Literature Review, Amarjit Kumar Singh, Pawan Kumar Singh Aug 2019

Recent Trends, Current Research In Cyberpsychology: A Literature Review, Amarjit Kumar Singh, Pawan Kumar Singh

Library Philosophy and Practice (e-journal)

Cyberpsychology refers to the study of the mind and behavior in the context of interactions with technology. It is an emerging branch, which has focused on the psychological aspects connected to the increasing presence and usages of technology in modern lives. This paper traces recent advancement and trends of Cyberpsychology is an emerging domain of knowledge and goes on the give a literature review of the same. An analysis of the recent research and literature covering 300 most relevant research papers from the period of 2012 to 15, August 2019 was conducted to determine and shape the research pattern based …


Rationale, Design, And Baseline Characteristics Of Walkit Arizona: A Factorial Randomized Trial Testing Adaptive Goals And Financial Reinforcement To Increase Walking Across Higher And Lower Walkable Neighborhoods, Marc A. Adams, Jane Hurley, Christine Phillips, Michael Todd, Siddhartha Angadi, Vincent Berardi, Melbourne F. Hovell, Steven Hooker May 2019

Rationale, Design, And Baseline Characteristics Of Walkit Arizona: A Factorial Randomized Trial Testing Adaptive Goals And Financial Reinforcement To Increase Walking Across Higher And Lower Walkable Neighborhoods, Marc A. Adams, Jane Hurley, Christine Phillips, Michael Todd, Siddhartha Angadi, Vincent Berardi, Melbourne F. Hovell, Steven Hooker

Psychology Faculty Articles and Research

Little change over the decades has been seen in adults meeting moderate-to-vigorous physical activity (MVPA) guidelines. Numerous individual-level interventions to increase MVPA have been designed, mostly static interventions without consideration for neighborhood context. Recent technologies make adaptive interventions for MVPA feasible. Unlike static interventions, adaptive intervention components (e.g., goal setting) adjust frequently to an individual's performance. Such technologies also allow for more precise delivery of “smaller, sooner incentives” that may result in greater MVPA than “larger, later incentives”. Combined, these factors could enhance MVPA adoption. Additionally, a central tenet of ecological models is that MVPA is sensitive to neighborhood environment …


Addressing Barriers To Preventative Health Care For Transgender Populations: A Systems Approach To Improving Access To Gynecological Care, Meghan N. Flynn May 2019

Addressing Barriers To Preventative Health Care For Transgender Populations: A Systems Approach To Improving Access To Gynecological Care, Meghan N. Flynn

Master's Theses

The current study addresses the lack of research exploring the individual and systemic barriers to accessing gynecological care for transgender populations. An integrated mixed-methods needs assessment was designed to explore the individual and systemic barriers to gynecological health care for transgender and gender diverse populations. Participants of the study included established community providers known to serve the transgender community through advocacy or research efforts, as well as clinical psychologists and medical professionals working in gynecological settings. The study includes a brief quantitative survey, which measured “Perceptions of Inclusivity Importance” among key stakeholders. Following the survey, participants were invited to engage …


Female Genital Mutilation In The United States: Estimating The Number Of Girls At Risk, Phyllis Chesler May 2019

Female Genital Mutilation In The United States: Estimating The Number Of Girls At Risk, Phyllis Chesler

Dignity: A Journal of Analysis of Exploitation and Violence

Female genital mutilation (FGM) destroys the capacity of women to experience sexual pleasure. It causes serious medical complications such as bleeding, painful urination, cysts, dangerous and recurrent bladder and urinary tract infections, the growth of scar tissue that make marital intercourse a nightmare and that turns childbirth into an experience of danger and torture. Due to immigration, FGM now poses a potential health crisis in the West, both in Europe and in the United States. To estimate how many girls who live in the West are at risk, one can measure the prevalence of FGM in the non-Western countries where …


Z4, A Slow Puncture: An Autoethnographic Exploration Of Language, Embodiment, And Meaning-Making, Charlotte Rose Samuels Apr 2019

Z4, A Slow Puncture: An Autoethnographic Exploration Of Language, Embodiment, And Meaning-Making, Charlotte Rose Samuels

Independent Study Project (ISP) Collection

In my ISP, I explored language as it relates to the ways in which people living in Cato Manor make sense of HIV/AIDS in their community. With 7.1-7.2 million people living with HIV (PLWHIV) in South Africa, individuals across the country are either infected or affected by illness. KwaZulu-Natal (KZN), the province with the highest rate of HIV, is also the province that was surveyed with the disproportionately highest internal stigma rates for PLWHIV. High prevalence of HIV, particularly in KZN, calls for a constant contextualization of life in the presence of illness.

Throughout the world, metaphor and symbolism is …


The Influence Of Stressful Life Events On The Development Of Type 2 Diabetes, Joshua Minks Mar 2019

The Influence Of Stressful Life Events On The Development Of Type 2 Diabetes, Joshua Minks

Dissertations

This study examined the relationship between distress and the development of Type 2 diabetes mellitus (T2DM) in the presence of established risk factors. Distress secondary to mental health disparities, stressful life events, and work conditions has been shown to promote insulin resistance and the development of T2DM.

Subjects (N=79) diagnosed with T2DM within the previous six months were recruited from SSM Health Centers and VA Medical Centers in the greater St. Louis area. They completed the Recent Life Changes Questionnaire, ENRICHD Social Support Instrument, and a demographic survey and analyses were conducted to determine differences between the veteran …


Painting Intimacy: Art-Based Research Of Intimacy, Michal Lev Mar 2019

Painting Intimacy: Art-Based Research Of Intimacy, Michal Lev

Expressive Therapies Dissertations

This art-based research explores whether — and, if so, how — the process of painting, together with witnessing and reflection on the process and imagery, further an understanding of intimacy. The research also examines the conditions that favor intimacy, the obstacles to intimacy, and the particular features of artistic media, processes and reflection, through the editing of video footage, that can further the intimate experience. The participants in the study were five adults (including the researcher) between the ages of thirty and eighty who were familiar with the creation of visual art. Among them were three women and two men …


Understanding The Relationship Between Perfectionism And Health: Mediational Effects Drug Use, Sarah Nelsen Jan 2019

Understanding The Relationship Between Perfectionism And Health: Mediational Effects Drug Use, Sarah Nelsen

Electronic Theses and Dissertations

Past research has provided evidence on the consequences of perfectionism. One particular consequence of perfectionism is that of general health. Research has suggested that perfectionism type influences general mental health. Using the 3-cluster perspective of perfectionism by Slaney, Rice, Mobley, Trippi, & Ashby (2001), the current work investigates the mediating effects of drug use on the relationship between perfectionism clusters and general mental health, in the context of Conservation of Resources Theory (COR; Hobfoll, 1989). Adaptive perfectionists had higher general mental health compared to non-perfectionists and maladaptive perfectionists. However, the three clusters of perfectionism did not differ in drug use …


Maternal Immune Activation (Mia) In Mice: A Study To Phenotype Asd-Related Communication Behaviors And Analyze Maternal Health Outcomes In The Us, Komalpreet Gulati Dec 2018

Maternal Immune Activation (Mia) In Mice: A Study To Phenotype Asd-Related Communication Behaviors And Analyze Maternal Health Outcomes In The Us, Komalpreet Gulati

Honors Scholar Theses

Core symptoms of Autism Spectrum Disorders (ASD) include deficits in social/communicative behaviors, and repetitive/stereotyped behaviors. Mouse models are a highly established paradigm used to study the phenotypic deficits that result from various inducible genotypic or environmental risk factors for ASD. Previous studies have demonstrated a link between maternal immune activation (MIA) and ASD-like behaviors in mouse models. In this model, the maternal immune system is activated during pregnancy by injecting the viral mimic poly(I:C). The resulting offspring are phenotyped and analyzed with regards to their communicative behaviors.

Previous studies have demonstrated that male pups born to dams with immune activation …


Health Behavior Among Men Occupying Multiple Family Roles And The Moderating Effects Of Perceived Partner Relationship Quality, Nicole Depasquale, Courtney A. Polenick, Jesse Hinde, Jeremy Bray, Steven H. Zarit, Phyllis Moen, Leslie B. Hammer, David M. Almeida Nov 2018

Health Behavior Among Men Occupying Multiple Family Roles And The Moderating Effects Of Perceived Partner Relationship Quality, Nicole Depasquale, Courtney A. Polenick, Jesse Hinde, Jeremy Bray, Steven H. Zarit, Phyllis Moen, Leslie B. Hammer, David M. Almeida

Psychology Faculty Publications and Presentations

Men in the U.S. are increasingly involved in their children’s lives and currently represent 40% of informal caregivers to dependent relatives or friends aged 18 years or older. Yet, much more is known about the health effects of varying family role occupancies for women relative to men. The present research sought to fill this empirical gap by first comparing the health behavior (sleep duration, cigarette smoking, alcohol consumption, exercise, fast food consumption) of men who only occupy partner roles and partnered men who also fill father, informal caregiver, or both father and informal caregiver (i.e., sandwiched) roles. The moderating effects …


The Micro-Politics Of A New Mental Condition: Legitimization In Maladaptive Daydreamers' Discourse, Orit Bershtling Ph.D., Eli Somer Ph.D. Aug 2018

The Micro-Politics Of A New Mental Condition: Legitimization In Maladaptive Daydreamers' Discourse, Orit Bershtling Ph.D., Eli Somer Ph.D.

The Qualitative Report

This study illuminates legitimization efforts in the discourse of individuals who suffer from excessive, uncontrolled daydreaming: a contested mental condition that has not yet been recognized by the medical establishment. It aims to explore the rhetorical maneuvers employed by these “Maladaptive Daydreamers” in 35 email exchanges with the second author and two petitions, submitted to the American Psychiatric Association and to the UK Parliament, with a demand for recognition. Our analysis, anchored theoretically and methodologically in Critical Discourse Analysis, identified several verbal strategies employed by the participants to persuade their interlocutors about the realness of their suffering. The main strategies …


A Military Chronic Pain Interdisciplinary Outpatient Program’S (Iop) Approach To Reducing Pain And Disability And Increasing Functional Ability, Paris N. Mcdonald Aug 2018

A Military Chronic Pain Interdisciplinary Outpatient Program’S (Iop) Approach To Reducing Pain And Disability And Increasing Functional Ability, Paris N. Mcdonald

USC Aiken Psychology Theses

The present study employed self-report measures to assess pain intensity, self-report perception of disability, and patient activation, and objective functional measures to explore the outcomes of a military interdisciplinary chronic pain intensive outpatient program. Seventy-three Active Duty Service Members (SM) with chronic pain completed baseline measures (pre-IOP) and graduation day measures, 60 SMs completed one-month follow-up measures, and 28 completed three-month follow-up measures. Results indicated that self-report pain levels decreased from pre-IOP to graduation day. The decrease was maintained; however, no additional significant decrease in pain occurred following program completion. Further, participant’s self-reported perception of disability due to back pain …


Measuring Women's Empowerment In Sub-Saharan Africa: Exploratory And Confirmatory Factor Analyses Of The Demographic And Health Surveys, Ibitola O. Asaolu, Halimatou Alaofè, Jayleen K. L. Gunn, Akosua K. Adu, Amanda J. Monroy, John E. Ehiri, Mary H. Hayden, Kacey C. Ernst Jun 2018

Measuring Women's Empowerment In Sub-Saharan Africa: Exploratory And Confirmatory Factor Analyses Of The Demographic And Health Surveys, Ibitola O. Asaolu, Halimatou Alaofè, Jayleen K. L. Gunn, Akosua K. Adu, Amanda J. Monroy, John E. Ehiri, Mary H. Hayden, Kacey C. Ernst

Epidemiology and Environmental Health Faculty Publications

Background: Women's status and empowerment influence health, nutrition, and socioeconomic status of women and their children. Despite its benefits, however, research on women's empowerment in Sub-Saharan Africa (SSA) is limited in scope and geography. Empowerment is variably defined and data for comparison across regions is often limited. The objective of the current study was to identify domains of empowerment from a widely available data source, Demographic and Health Surveys, across multiple regions in SSA.

Methods: Demographic and Health Surveys from nineteen countries representing four African regions were used for the analysis. A total of 26 indicators across different dimensions (economic, …


Facebook As A Social Outreach And Advocacy Tool In Intersex/Dsd Groups, Emelie J. Ali Ms May 2018

Facebook As A Social Outreach And Advocacy Tool In Intersex/Dsd Groups, Emelie J. Ali Ms

Publications and Research

My project includes a netnography of a Facebook intersex group called Families and Friends of Intersex People. I observed the group’s forms of communication within the group and which topics they discussed. It appears one of the major concerns the group has is the use of nonconsensual, sex assignment surgery on infants to “correct” their body to match a gender identity. I have also discovered a link between being intersex and affiliated with the LGBT+ community. Since the 20th century, intersex people have been stigmatized due to their assumed ability to engage in sexual, same-sex relations. I have concluded that …


The Impact Of Prosthetics On Amputee Quality Of Life, Courtney Tabor Apr 2018

The Impact Of Prosthetics On Amputee Quality Of Life, Courtney Tabor

Liberal Arts Capstones

After someone has a limb amputated, their lifestyle must be rearranged to accommodate for the loss of the limb. This can include adjusting to an inability to do tasks that used to come easily and a drastic reduction in mobility. They may now require assistance with caring for themselves. As a side effect, amputees often experience a significant level of depression and anxiety related to their situation. A selection of literature was analyzed for the physiological, psychological, and sociological effects of losing a limb, and then for the ways in which a prosthetic limb would alleviate some of these issues. …


Allopathic Medicine’S Influence On Indigenous Peoples In The Kumaon Region Of India, Eliana M. Blum Apr 2018

Allopathic Medicine’S Influence On Indigenous Peoples In The Kumaon Region Of India, Eliana M. Blum

Butler Journal of Undergraduate Research

This paper focuses on the use of western medicine in the Kumaon region of Uttarakhand, India. The goal of this research is to understand which healing practices are preferable in rural villages. Semi-structured interviews were conducted with 53 participants, including two spiritual healers, two doctors, and one pharmacist. Results indicate that allopathic medicine, otherwise known as modern medicine or western medicine, has become the go-to remedy for even the most remote people in India. Nearly all participants use allopathic medicine, but less than half of the participants experiment with other forms of healing, such as Ayurveda, homeopathy, meditation, and yoga. …


The Predictors Of Juvenile Recidivism: Testimonies Of Adult Students 18 Years And Older Exiting From Alternative Education, La Toshia Palmer Apr 2018

The Predictors Of Juvenile Recidivism: Testimonies Of Adult Students 18 Years And Older Exiting From Alternative Education, La Toshia Palmer

Dissertations

Purpose: The purpose of this descriptive, qualitative study was to identify and describe the importance of the predictors of juvenile recidivism and the effectiveness of efforts to prevent/avoid juvenile recidivism as perceived by previously detained, arrested, convicted, and/or incarcerated adult students 18 years of age and older exiting from alternative education in Northern California. A second purpose was to explore the types of support provided by alternative schools and the perceived importance of the support to avoid recidivism according to adult students 18 years of age and older exiting from alternative education.

Methodology: This qualitative, descriptive research design identified …


How Graduate Experience Changes Beliefs In Working With Culturally And Linguistically Diverse Populations: A Survey Study, Stephanie Bove Jan 2018

How Graduate Experience Changes Beliefs In Working With Culturally And Linguistically Diverse Populations: A Survey Study, Stephanie Bove

All Graduate Theses, Dissertations, and Other Capstone Projects

Speech-language pathologists work in a variety of settings that require savvy transitions between patients from many cultures and backgrounds. Graduate students may get little practice working with culturally and linguistically diverse populations depending upon where they perform their practicum and internships. Researchers at a mid-western university developed a survey to collect student perspectives regarding cultural competence. A single cohort received the survey at three intervals to track a change in responses from the beginning of their first year of graduate school through their clinical fellowship. Students took a Multicultural Issues class between their first and second survey responses. Data collected …


Patient Experience Of Taking Adjuvant Endocrine Therapy For Breast Cancer: A Tough Pill To Swallow, Kuang-Yi Wen, Rita Smith, Aruna Padmanabhan, Lori Goldstein Nov 2017

Patient Experience Of Taking Adjuvant Endocrine Therapy For Breast Cancer: A Tough Pill To Swallow, Kuang-Yi Wen, Rita Smith, Aruna Padmanabhan, Lori Goldstein

Patient Experience Journal

Adjuvant endocrine therapy (AET) has substantially improved the mortality rate among breast cancer survivors. Despite the proven efficacy, the non-adherence rate to therapy is still high. This study is aimed to examine women’s challenges related to AET adherence and management. Semi-structured interviews were conducted with six Caucasian and six African American breast cancer survivors who were prescribed for AET. The transcripts of audio-taped interviews were qualitatively analyzed. Key themes were: 1) positive beliefs in AET, 2) uncertainty about long-term adherence, 3) experiences with side effects, 4) forgetting and remembering, 5) other concerns and information needs, 6) potential intervention format, and …


Discrimination And Anger Control As Pathways Linking Socioeconomic Disadvantage To Allostatic Load In Midlife, Samuele Zilioli, Ledina Imami, Anthony D. Ong, Mark A. Lumley, Tara Gruenewald Oct 2017

Discrimination And Anger Control As Pathways Linking Socioeconomic Disadvantage To Allostatic Load In Midlife, Samuele Zilioli, Ledina Imami, Anthony D. Ong, Mark A. Lumley, Tara Gruenewald

Psychology Faculty Articles and Research

Objective

Recent evidence suggests that experiences of discrimination contribute to socioeconomic status health disparities. The current study examined if the experience and regulation of anger—an expected emotional response to discrimination—serves as an explanatory factor for the previously documented links between socioeconomic disadvantage (SED), discrimination, and allostatic load.

Methods

Data were drawn from the second wave of the Midlife Development in the U.S. study and included 909 adults who participated in the biomarkers subproject.

Results

Results revealed that perceived discrimination was associated with higher levels of allostatic load. Furthermore, we found evidence that perceived discrimination and anger control sequentially explained the …


A Descriptive Study Of The Elderly In California Substance Abuse Treatment Programs, David Berenschot Jun 2017

A Descriptive Study Of The Elderly In California Substance Abuse Treatment Programs, David Berenschot

Electronic Theses, Projects, and Dissertations

As gerontologists may know, there are a great deal of studies and a variety of academic literature on the misuse of alcohol and prescription medication amongst the elderly population. While there is a plethora of information on alcohol and prescription misuse, there is little reported data about the prevalence of other substance misuse experienced by this population. This study aims to help to fill that gap in the data by using quantitative methods to describe the scope of substance abuse of individuals 55-years or older. This study utilizes data from the Treatment Data Set Admission (TEDS-A). The TEDS-A is a …


Flesh And Blood, Clayton Petras May 2017

Flesh And Blood, Clayton Petras

Graduate School of Art Theses

In my work, I look for ways to visualize and document the degenerative mental disease of Parkinson’s and transform it into portrayals of the disease itself, its effects, and those it afflicts. Being a physical breakdown of the body, both popular culture and my own corporal understanding influence my interpretation and representation. This document outlines those influences and their buildup towards a shared understanding of the interests behind the work, as well as implies what the work does through these contexts.

How do we give identity to a disease that is difficult to diagnose or view on medical technology, currently …


Psychosocial Challenges Facing Women Living With Hiv During The Perinatal Period In Rural Uganda, Scholastic Ashaba, Angela Kaida, Jessica N. Coleman, Bridget F. Burns, Emma Dunkley, Kasey O'Neil, Jasmine Kastner, Naomi Sanyu, Cecilia Akatukwasa, David R. Bangsberg, Lynn T. Matthews, Christina Psaros May 2017

Psychosocial Challenges Facing Women Living With Hiv During The Perinatal Period In Rural Uganda, Scholastic Ashaba, Angela Kaida, Jessica N. Coleman, Bridget F. Burns, Emma Dunkley, Kasey O'Neil, Jasmine Kastner, Naomi Sanyu, Cecilia Akatukwasa, David R. Bangsberg, Lynn T. Matthews, Christina Psaros

OHSU-PSU School of Public Health Faculty Publications and Presentations

The complexities of navigating pregnancy while living with HIV predispose women to additional stress. Finding ways to minimize psychosocial challenges during the perinatal period may maximize the well-being of mothers living with HIV and their children. The goal of this study was to explore psychosocial challenges experienced by women living with HIV (WLWH) during pregnancy and the postpartum.

We conducted individual in-depth interviews with 20 WLWH recruited from an HIV treatment cohort study in Mbarara, Uganda as part of a larger study exploring perinatal depression. We conducted content analyses to identify themes related to challenges of WLWH during pregnancy and …


Warmth And Competence Traits: Perceptions Of Female And Male Nurse Stereotypes, Randolph E. Gross Feb 2017

Warmth And Competence Traits: Perceptions Of Female And Male Nurse Stereotypes, Randolph E. Gross

Dissertations, Theses, and Capstone Projects

A nursing shortage looms ahead; 1.03 million new nurses will be needed by 2022 to meet society's healthcare needs. A major barrier to recruitment of women and men are nurse stereotypes. The literature suggests four female and four male stereotypes exist; however, no quantitative research exists that explores perceptions of non-nursing undergraduate students. Approximately, 90% of college students do not consider nursing as a career option, and 72% have misconceptions of what nurses do in reality.

According to social cognitive theory's Stereotype Content Model (SCM), perceptions are viewed through a combination of two dimensions: warmth and competence. The author devised …


Reliability And Validity Of The Hd-Pro-Triadtm, A Health-Related Quality Of Life Measure Designed To Assess The Symptom Triad Of Huntington's Disease., Nicholas R Boileau, Julie C Stout, Janes S Paulsen, David Cella, Michael K Mccormack, Martha A Nance, Samuel Frank, Jin-Shei Lai, Noelle E Carlozzi Jan 2017

Reliability And Validity Of The Hd-Pro-Triadtm, A Health-Related Quality Of Life Measure Designed To Assess The Symptom Triad Of Huntington's Disease., Nicholas R Boileau, Julie C Stout, Janes S Paulsen, David Cella, Michael K Mccormack, Martha A Nance, Samuel Frank, Jin-Shei Lai, Noelle E Carlozzi

Rowan-Virtua School of Osteopathic Medicine Departmental Research

BACKGROUND: Huntington's disease (HD), is a neurodegenerative disorder that is associated with cognitive, behavioral, and motor impairments that diminish health related quality of life (HRQOL). The HD-PRO-TRIADTM is a quality of life measure that assesses health concerns specific to individuals with HD. Preliminary psychometric characterization was limited to a convenience sample of HD participants who completed measures at home so clinician-ratings were unavailable.

OBJECTIVES: The current study evaluates the reliability and validity of the HD-PRO-TRIADTM in a well-characterized sample of individuals with HD.

METHODS: Four-hundred and eighty-two individuals with HD (n = 192 prodromal, n = 193 early, and n …


The Role Of Afrocentric Features In Mental Healthcare Utilization And Counselor Preferences In Black College Students, Randl B. Dent Jan 2017

The Role Of Afrocentric Features In Mental Healthcare Utilization And Counselor Preferences In Black College Students, Randl B. Dent

Theses and Dissertations

Though mental health issues are prevalent in Black young adults, they underutilize mental healthcare services. This research examined the role of feature-based discrimination in mental healthcare (under)utilization. Study 1, a secondary analysis of the National Longitudinal Study of Adolescent to Adult Health, provided no evidence supporting a link between skin tone and mental healthcare utilization, when controlling for depression diagnosis. However, when controlling for depression symptoms, there was a trend such that Black young adults with darker, as opposed to lighter, skin tone utilized healthcare less. Study 2, an experimental study with 33 Black college students, showed 73% of the …


Recovery From Design, Cassandra J. Ellison Jan 2017

Recovery From Design, Cassandra J. Ellison

Theses and Dissertations

Through research, inquiry, and an evaluation of Recovery By Design, a ‘design therapy’ program that serves people with mental illness, substance use disorders, and developmental disabilities, it is my assertion that the practice of design has therapeutic potential and can aid in the process of recovery. To the novice, the practices of conception, shaping form, and praxis have empowering benefit especially when guided by Conditional and Transformation Design methods together with an emphasis on materiality and vernacular form.


Fish, Christine Stark Nov 2016

Fish, Christine Stark

Dignity: A Journal of Analysis of Exploitation and Violence

No abstract provided.


New Measures To Capture End Of Life Concerns In Huntington Disease: Meaning And Purpose And Concern With Death And Dying From Hdqlife (A Patient-Reported Outcomes Measurement System)., N E Carlozzi, N R Downing, M K Mccormack, S G Schilling, J S Perlmutter, E A Hahn, J S Lai, S Frank, K A Quaid, J S Paulsen, D Cella, S M Goodnight, J A Miner, M A Nance Oct 2016

New Measures To Capture End Of Life Concerns In Huntington Disease: Meaning And Purpose And Concern With Death And Dying From Hdqlife (A Patient-Reported Outcomes Measurement System)., N E Carlozzi, N R Downing, M K Mccormack, S G Schilling, J S Perlmutter, E A Hahn, J S Lai, S Frank, K A Quaid, J S Paulsen, D Cella, S M Goodnight, J A Miner, M A Nance

Rowan-Virtua School of Osteopathic Medicine Departmental Research

PURPOSE: Huntington disease (HD) is an incurable terminal disease. Thus, end of life (EOL) concerns are common in these individuals. A quantitative measure of EOL concerns in HD would enable a better understanding of how these concerns impact health-related quality of life. Therefore, we developed new measures of EOL for use in HD.

METHODS: An EOL item pool of 45 items was field tested in 507 individuals with prodromal or manifest HD. Exploratory and confirmatory factor analyses (EFA and CFA, respectively) were conducted to establish unidimensional item pools. Item response theory (IRT) and differential item functioning analyses were applied to …


You Poor Thing: A Retrospective Autoethnography Of Visible Chronic Illness As A Symbolic Vanishing Act, Alexandra Ch Nowakowski Sep 2016

You Poor Thing: A Retrospective Autoethnography Of Visible Chronic Illness As A Symbolic Vanishing Act, Alexandra Ch Nowakowski

The Qualitative Report

In this autoethnography, I outline a framework for understanding illness as deviance, contextualizing general sociological theory on sick role dynamics to the specific case of chronic conditions that manifest with visible physical differences. I demonstrate two distinct ways in which chronic conditions can foster labeling and stigma. First, I explore how social norms can result in sanctions for showing physical evidence of chronic conditions. I describe sanctions I have experienced for violating conventional ideas about youth and female beauty, and associated behavioral expectations. Second, I explore how double jeopardy can result from failing to meet usual social expectations for sickness. …