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Full-Text Articles in Translational Medical Research

Promoting Mammography Screenings In African American Women: Media, Church, And Health Providers, Lasonya Little, Debra C. Wallace, K.Jay Poole Nov 2023

Promoting Mammography Screenings In African American Women: Media, Church, And Health Providers, Lasonya Little, Debra C. Wallace, K.Jay Poole

Journal of Health Disparities Research and Practice

Due to the underutilization of screening mammography, African American women (AAW) are more likely to experience negative health outcomes after receiving a late-stage breast cancer diagnosis than White Women (WW). The purpose of this article is to examine the roles of the media, health community and the African American church and pastor and their potential impact in AAW screening decisions. Fifteen AAW, ages 45 and older, were invited to participate in a semi-structured interview. Most women agreed the African American pastor and church as well as the health community, and media are an integral part of their lives. Therefore, specific …


Slow Surgical Correction Affects More Than Just The Bowels, Emilia M. Clementi Nov 2023

Slow Surgical Correction Affects More Than Just The Bowels, Emilia M. Clementi

Clinical Research in Practice: The Journal of Team Hippocrates

Reflection on how delayed colostomy reversal affects a patient's mental and physical well-being.


Awareness & Prevention Of Health Hazards For Americans Embarking In Space Tourism, Krzysztof Zembrzuski May 2023

Awareness & Prevention Of Health Hazards For Americans Embarking In Space Tourism, Krzysztof Zembrzuski

Rowan-Virtua Research Day

Since the beginning of spaceflight, keeping humans healthy has been a serious concern. Prior to 2021, astronauts had to undergo an elite selection process to embark in space travel. Now that commercial spaceflight is a reality, the criteria to experience space has been significantly loosened, raising health concerns to a larger and unhealthier pool of travelers. Most commercial spaceflight clients are anticipated to be middle-aged adults, which implies many will suffer from high blood pressure and heart disease, both of which are frequent ailments in this age group. Because of the massive compression the body undergoes during takeoff and return, …


Understanding Coordinated Specialty Care Best Practice Through Fidelity Practices: A Qualitative Exploration, Halley Read Apr 2023

Understanding Coordinated Specialty Care Best Practice Through Fidelity Practices: A Qualitative Exploration, Halley Read

Doctor of Philosophy in Translational Health Sciences Dissertations

Background: Coordinated Specialty Care (CSC) is a multidisciplinary care model for providing care to youth and young adults having their first episode of psychosis. While outcomes of CSC effectiveness are overwhelmingly positive, and widespread implementation has occurred in all US states and territories, what is CSC best practice regarding components and fidelity to the model is not clear. CSC implementation is well documented from a fidelity to the model standpoint, but the highly variable fidelity practices and versions of the model are not well understood. Nor are the experiences of those who deliver or receive care. Adding to the complexity …


Advancing Health Equity In The Us Military, James D. Mancuso, John Young, Jennifer Rusiecki, Shauna Stahlman, Natasha Schvey, Toya Randolph, Candy Wilson, Catherine Witkop, Patrick Hyde, Althea Green, Patcho Santiago, Donald Shell, Tracy Sbrocco Mar 2023

Advancing Health Equity In The Us Military, James D. Mancuso, John Young, Jennifer Rusiecki, Shauna Stahlman, Natasha Schvey, Toya Randolph, Candy Wilson, Catherine Witkop, Patrick Hyde, Althea Green, Patcho Santiago, Donald Shell, Tracy Sbrocco

Journal of Health Disparities Research and Practice

Eliminating health disparities and achieving health equity are central to US national health objectives and the Military Health System’s “quadruple aim,” which has readiness as its core aim. Because military service members enjoy universal eligibility for health care, it is sometimes assumed that health disparities do not exist in the Department of Defense (DoD). However, while some studies have shown that disparities have been attenuated or eliminated in the DoD, others suggest that significant disparities remain. Reasons these disparities may remain include that universal eligibility for care does not necessarily result in equal to access to care, and that equal …


Assessment Of The Interplay Between Regional Β-Amyloid Burden And White Matter Hyperintensities On Cognition And Default Mode Network In Clinically Normal Older Participants, Doaa G. Ali Jan 2023

Assessment Of The Interplay Between Regional Β-Amyloid Burden And White Matter Hyperintensities On Cognition And Default Mode Network In Clinically Normal Older Participants, Doaa G. Ali

Theses and Dissertations--Clinical and Translational Science

Objective: Alzheimer’s disease (AD) and subcortical vascular dementia are considered the most common pathologic contributors to dementia in the aging population. Both frequently coexist in over 80% of community dwelling adults with dementia. The neuropathological development of AD arguably begins with β-amyloid (Aβ) deposition in the brain. This series of studies aims to test the hypothesis that early focal regional amyloid deposition in the brain is associated with cognitive performance in specific cognitive domain scores in preclinical AD (pAD) (study1). Since mixed dementia is widely recognized as the norm rather than the exception, the second study aimed to explore the …


Emergency Care For Youth Who Experience Suicidality And Identify As Lesbian Gay Bisexual Transgender Queer/Questioning (Lgbtq+): An Interpretive Phenomenology, Theresa Schultz Aug 2022

Emergency Care For Youth Who Experience Suicidality And Identify As Lesbian Gay Bisexual Transgender Queer/Questioning (Lgbtq+): An Interpretive Phenomenology, Theresa Schultz

Electronic Theses and Dissertations

Purpose: Suicide is a leading cause of death in children; youth who identify as LGBTQ+ are at an exponentially higher risk of suicide. The purpose of this study was to explore the lived experiences of young adults who identify as LGBTQ+ and sought emergency care for suicidality when they were adolescents.

Methods: Heideggerian hermeneutics phenomenology is the research method used in this study. Youth, ages 18-25 years, who identify as LGBTQ+ and sought emergency treatment for suicidality when they were adolescents (13-17 years) were recruited to participate;fifteen youth enrolled. Individuals ranged in age from 20 to 25 years. Participants described …


Conference Proceedings: Select Abstracts Presented At 2021 Advocate Aurora Health Scientific Day Oct 2021

Conference Proceedings: Select Abstracts Presented At 2021 Advocate Aurora Health Scientific Day

Journal of Patient-Centered Research and Reviews

Abstracts published within this supplement were presented at the 47th annual Advocate Aurora Health Scientific Day, held virtually on May 26, 2021. This research symposium provides a forum for disseminating results from studies conducted by faculty, fellows, residents, and other allied health professionals associated with Midwest-based health system Advocate Aurora Health, which publishes the Journal of Patient-Centered Research and Reviews.


A Light In The Dark: End-Of-Life Conversations In Advanced Cancer Patients Improve Caregiver Grief, Nicole Meeks Oct 2021

A Light In The Dark: End-Of-Life Conversations In Advanced Cancer Patients Improve Caregiver Grief, Nicole Meeks

Clinical Research in Practice: The Journal of Team Hippocrates

A clinical decision report using:

Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, Mitchell SL, Jackson VA, Block SD, Maciejewski PK, & Prigerson HG. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300(14):1665-1673. https://doi.org/10.1001/jama.300.14.1665

for a patient with end stage cancer and an anxious caregiver.


Clinical Approach To A Request For Phentermine-Topiramate In A Young Woman With A History Of High-Risk Eating Behavior, Erin Spencer Oct 2020

Clinical Approach To A Request For Phentermine-Topiramate In A Young Woman With A History Of High-Risk Eating Behavior, Erin Spencer

Clinical Research in Practice: The Journal of Team Hippocrates

A clinical decision report appraising Safer DL, Adler S, Dalai SS, et al. A randomized, placebo-controlled crossover trial of phentermine-topiramate ER in patients with binge-eating disorder and bulimia nervosa. Int J Eat Disord. 2019;(September):1-12. https://doi.org/10.1002/eat.23192 to inform the clinical decision of whether or not to prescribe phentermine-topiramate to an overweight 27-year-old woman who endorses risky eating behaviors.


Medication Assisted Treatment With Buprenorphine/Naloxone Or Methadone: Comparitive Outcomes In Patients With An Opioid Addiction, Deepti Shanbhag Oct 2020

Medication Assisted Treatment With Buprenorphine/Naloxone Or Methadone: Comparitive Outcomes In Patients With An Opioid Addiction, Deepti Shanbhag

Clinical Research in Practice: The Journal of Team Hippocrates

A clinical decision report appraising Hser YI, Evans E, Huang D, et al. Long‐term outcomes after randomization to buprenorphine/naloxone versus methadone in a multi‐site trial. Addiction. 2016;111(4):695-705. https://doi.org/10.1111/add.13238 for a patient with addiction to prescription opioids.


Mindfulness Therapy Is An Effective Adjunctive Treatment For Adolescents Living With Hiv, Samantha Rea Oct 2020

Mindfulness Therapy Is An Effective Adjunctive Treatment For Adolescents Living With Hiv, Samantha Rea

Clinical Research in Practice: The Journal of Team Hippocrates

A clinical decision report appraising Webb L, Perry-Parrish C, Ellen J, Sibinga E. Mindfulness instruction for HIV-infected youth: a randomized controlled trial. AIDS Care. 2018;30(6):688–695. https://doi.org/10.1080/09540121.2017.1394434


Training The Next Generation Of Family Medicine Providers Through Group Buprenorphine-Naloxone Visits, Krystina Callahan, Lara Weinstein, Md, Erica Li, Md, Sunny Lai, Md, Alexis Silverio Jan 2020

Training The Next Generation Of Family Medicine Providers Through Group Buprenorphine-Naloxone Visits, Krystina Callahan, Lara Weinstein, Md, Erica Li, Md, Sunny Lai, Md, Alexis Silverio

Phase 1

Introduction: The rise in opioid use disorders (OUD) and fatal overdoses highlight the need to expand access to and capacity for treating OUD. Medication Assisted Treatment (MAT), a medication/group visit model, done in the office setting, is an effective remedy for treating OUD. Understanding residents’ perspectives on their clinical training in MAT can inform the design of a more effective and responsive curriculum.

Methods: A qualitative study using group semi-structured interviews with residents in an urban family medicine residency rotating through a federally qualified health center. Interviews centered on strengths and weaknesses of the MAT program, resident likeliness to …


Does Maternal Methadone Dose Correlate With Severity Of Intrauterine Growth Restriction In Infants With Neonatal Abstinence Syndrome?, D. Friedman, J. Smith, M. Lafferty, Z. H. Aghai Jan 2020

Does Maternal Methadone Dose Correlate With Severity Of Intrauterine Growth Restriction In Infants With Neonatal Abstinence Syndrome?, D. Friedman, J. Smith, M. Lafferty, Z. H. Aghai

Phase 1

Introduction : Previous studies demonstrate a relationship between maternal opioid use during pregnancy and smaller head circumference of infants with neonatal abstinence syndrome (NAS). The goal of this study is to correlate maternal methadone dose and severity of growth restriction in infants with NAS admitted to the neonatal intensive care unit (NICU).

Methods: This is a retrospective analysis of infants (≥35 weeks gestation) exposed to in utero methadone, born between August 2006 and May 2018, and admitted to a Philadelphia NICU for medical therapy for NAS. Growth parameters (birth weight, birth length, and birth head circumference) were compared between infants …


The Effect Of Perceived Physician Opinion On Breastfeeding In Women With Opioid Use Disorder Who Are Receiving Medication-Assisted Treatment, Lacey Murray, Meghan Gannon, Phd, Vanessa Short, Phd, Mph Jan 2020

The Effect Of Perceived Physician Opinion On Breastfeeding In Women With Opioid Use Disorder Who Are Receiving Medication-Assisted Treatment, Lacey Murray, Meghan Gannon, Phd, Vanessa Short, Phd, Mph

Phase 1

Women who receive medication-assisted treatment (MAT) for opioid use disorder (OUD) are less likely to breastfeed than the general population despite the many possible benefits to the newborn. The ongoing study examines the effect of perceived physician opinion on the outcome of breastfeeding in women receiving MAT for OUD. Women who were receiving MAT for OUD at Thomas Jefferson University’s Family Center were given a survey during their third trimester (n=45), and at 1 month postpartum (n=33) to gather information on the perceived opinion of their physicians on how they should feed their baby and the importance of those opinions. …


Effects Of Neonatal Abstinence Syndrome On Long-Term Growth Parameters, Ayoung Kim, Anastasiya Latushko, Md, Zubair H. Aghai, Md Jan 2020

Effects Of Neonatal Abstinence Syndrome On Long-Term Growth Parameters, Ayoung Kim, Anastasiya Latushko, Md, Zubair H. Aghai, Md

Phase 1

Introduction: Past studies have shown that babies with Neonatal Abstinence Syndrome (NAS) have lower weight, head circumference, and height at birth. This study aims to compare their growth at 9 and 18 months of age, and to compare growth parameter of NAS infants below 10th percentile to those above 10th percentile at birth.

Methods: In this retrospective review, 260 infants admitted to Jefferson Neonatal Intensive Care Unit between 2006 and 2018 were included. The weight, height, and head circumference at birth, 9 months, and 18 months were collected and correlated by Pearson correlation. The growth parameters of infants below …


Understanding The Relationship Between Drug Overdose Death Rates And Socioeconomic Factors, William Duan, Dennis J. Hand Jan 2020

Understanding The Relationship Between Drug Overdose Death Rates And Socioeconomic Factors, William Duan, Dennis J. Hand

Phase 1

Drug-overdose deaths increased rapidly recently. What are the causes? We believe socioeconomical factors play critical roles. Secondary data analyses are done on the US population, using mortality-data files from the National Vital Statistics System. Deaths are grouped by race, age, sex, education and marital status. We believe that the percentage-of-total-death (PoTD) value, which equals to the number-of-overdose-deaths divided by the total-number-of-deaths in the corresponding group, more accurately reflect the severity of overdose-deaths. Analysis of 2017 data reveals that among all age groups, PoTD is highest in the age 25-34 group, with dramatic differences between white (PoTD 24%) and black (PoTD …


Gut Microbiome Analysis In Morphine Exposure And Naltrexone-Induced Withdrawal, Nick Rapp, Sean O'Sullivan, James Schwaber Jan 2020

Gut Microbiome Analysis In Morphine Exposure And Naltrexone-Induced Withdrawal, Nick Rapp, Sean O'Sullivan, James Schwaber

Phase 1

Introduction and Objectives: Relatively little is understood about the underlying physiological changes that occur in the withdrawal state of opiate users. Research on the effects of alcohol withdrawal on the Gut-brain axis (GBA) has revealed shifts in relative numbers of specific bacterial species that correlate with increased central nervous system (CNS) inflammation via neurological crosstalk. The purpose of this research was to determine if similar shifts in the relative abundance of bacterial populations occur in the opiate withdrawal state.

Methods: Fourteen rats were randomized into four groups. Control and experimental rats were administered 75 mg morphine pellets or placebo (sugar) …


Reflection: Reducing Long-Term Mortality In Suicidal Adolescents, Nina R. Bihani Sep 2019

Reflection: Reducing Long-Term Mortality In Suicidal Adolescents, Nina R. Bihani

Clinical Research in Practice: The Journal of Team Hippocrates

A transformative method to reducing mortality in suicidal adolescents involves a novel approach of educating and empowering their loved ones.


Abstracts From The 25th Annual Health Care Systems Research Network Conference, April 8–10, 2019, Portland, Oregon Apr 2019

Abstracts From The 25th Annual Health Care Systems Research Network Conference, April 8–10, 2019, Portland, Oregon

Journal of Patient-Centered Research and Reviews

The Health Care Systems Research Network (HCSRN) is made up of nonprofit health systems with embedded research departments whose scientists are dedicated to public domain research. The network’s annual conference serves as a forum for research teams to disseminate study findings, stimulate new collaborations, and share insights about conducting research in real-world care settings. Abstracts accepted for presentation at HCSRN 2019 are published in this supplement of Journal of Patient-Centered Research and Reviews, the official scientific journal of the conference.


The Fertility Problem Inventory And Infertility-Related Stress: A Case Study, Staci L. Born, Jennifer J. Preston Mar 2019

The Fertility Problem Inventory And Infertility-Related Stress: A Case Study, Staci L. Born, Jennifer J. Preston

Staci Born

More than seven million people of childbearing age in the United States experience infertility. Oftentimes, for women, the experience of infertility is stressful. The Fertility Problem Inventory (FPI) has been used to quantitatively measure women’s experience of infertility-related stress. However, the construct of infertility-related stress is poorly described in existing literature. The purpose of this case study was to understand how women experience the FPI as a measure of infertility-related stress. To address this issue, women who were undergoing infertility treatment completed the FPI and participated in unstructured interviews. Archival documents were also retrieved to corroborate findings and satisfy saturation. …


A Pilot Study Of A Multiple Health Behavior Change Intervention For Smokers, Srihari Seshadri Jan 2019

A Pilot Study Of A Multiple Health Behavior Change Intervention For Smokers, Srihari Seshadri

Theses and Dissertations--Clinical and Translational Science

Background: Being both obese and a smoker increases the probability of developing type 2 diabetes, cardiovascular disease, and cancer, diseases that impact Kentucky residents disproportionately. Kentucky (KY) has a high incidence of obesity (34.2%) and smoking (24.5 %). Weight gain associated with smoking cessation also can undermine health benefits of quitting, and may lead to smoking relapse.

Aim: The aim of the pilot study was to implement and evaluate a Multiple Health Behavioral Change (MHBC) program that combines Cooper Clayton Method to Stop Smoking (CCMSS) and the Diabetes Prevention Program (DPP) for weight control.

Method: A 15-week intervention was administered …


Translational Insights Into The Genetic Etiology Of Mental Health Disorders: Examining Risk Factor Models, Neuroimaging, And Current Dissemination Practices, Jessica L. Bourdon Jan 2019

Translational Insights Into The Genetic Etiology Of Mental Health Disorders: Examining Risk Factor Models, Neuroimaging, And Current Dissemination Practices, Jessica L. Bourdon

Theses and Dissertations

Psychiatric genetics is a basic science field that has potential for practical application and effective translation. To date, translational frameworks utilized by this field have been linear (e.g., sequential) in nature, focusing on molecular genetic information. It is proposed that non-linear (e.g., socio-ecological) frameworks are a better way to immediately translate non-molecular genetic information. This dissertation explored the translation of psychiatric genetic information in two ways. First, a survey was sent to academic stakeholders to assess the state of the science regarding the translation of genetic information to the clinical care of mental health disorders. Findings from this indicate a …


Similarity Based Classification Of Adhd Using Singular Value Decomposition, Taban Eslami, Fahad Saeed Apr 2018

Similarity Based Classification Of Adhd Using Singular Value Decomposition, Taban Eslami, Fahad Saeed

Parallel Computing and Data Science Lab Technical Reports

Attention deficit hyperactivity disorder (ADHD) is one of the most common brain disorders among children. This disorder is considered as a big threat for public health and causes attention, focus and organizing difficulties for children and even adults. Since the cause of ADHD is not known yet, data mining algorithms are being used to help discover patterns which discriminate healthy from ADHD subjects. Numerous efforts are underway with the goal of developing classification tools for ADHD diagnosis based on functional and structural magnetic resonance imaging data of the brain. In this paper, we used Eros, which is a technique for …


Hockey Fans In Training: A Pilot Pragmatic 1 Randomized Controlled Trial, Robert Petrella, Dawn P. Gill, Guangyong Zou, Ashleigh De Cruz, Brendan Riggin, Cassandra Bartol, Karen Danylchuk, Kate Hunt, Sally Wyke, Cindy M. Gray, Christopher Bunn, Merrick Zwarenstein Dec 2017

Hockey Fans In Training: A Pilot Pragmatic 1 Randomized Controlled Trial, Robert Petrella, Dawn P. Gill, Guangyong Zou, Ashleigh De Cruz, Brendan Riggin, Cassandra Bartol, Karen Danylchuk, Kate Hunt, Sally Wyke, Cindy M. Gray, Christopher Bunn, Merrick Zwarenstein

Lifestyle Research Team

Introduction Hockey Fans in Training (Hockey FIT) is a gender-sensitized weight loss and healthy lifestyle program. We investigated 1) feasibility of recruiting and retaining overweight and obese men into a pilot pragmatic randomized controlled trial and 2) potential for Hockey FIT to lead to weight loss and improvements in other outcomes at 12 wk and 12 months.

Methods Male fans of two ice hockey teams (35–65 yr; body mass index ≥28 kg·m−2) located in Ontario (Canada) were randomized to intervention (Hockey FIT) or comparator (wait-list control). Hockey FIT includes a 12-wk active phase (weekly, coach-led group meetings including provision of …


Person-Centered Treatment To Optimize Psychiatric Medication Adherence, Natalie Bareis Jan 2017

Person-Centered Treatment To Optimize Psychiatric Medication Adherence, Natalie Bareis

Theses and Dissertations

Objectives: Adherence to psychotropic medication is poor among individuals with bipolar disorder (BD). To understand treatment experiences and associated adherence among these individuals, we developed a novel construct of Clinical Net Benefit (CNB) using psychiatric symptoms, adverse effects and overall functioning assessments. We tested whether adherence differed across classes of CNB, whether individuals transitioned between classes over time, and whether these transitions were differentially associated with adherence.

Methods: Data come from individuals aged 18+ during five years of the Systematic Treatment Enhancement Program for Bipolar Disorder (STEP-BD). Latent class analysis identified groups of CNB. Latent transition analysis determined probabilities of …


The Fertility Problem Inventory And Infertility-Related Stress: A Case Study, Staci L. Born, Jennifer J. Preston Mar 2016

The Fertility Problem Inventory And Infertility-Related Stress: A Case Study, Staci L. Born, Jennifer J. Preston

The Qualitative Report

More than seven million people of childbearing age in the United States experience infertility. Oftentimes, for women, the experience of infertility is stressful. The Fertility Problem Inventory (FPI) has been used to quantitatively measure women’s experience of infertility-related stress. However, the construct of infertility-related stress is poorly described in existing literature. The purpose of this case study was to understand how women experience the FPI as a measure of infertility-related stress. To address this issue, women who were undergoing infertility treatment completed the FPI and participated in unstructured interviews. Archival documents were also retrieved to corroborate findings and satisfy saturation. …


Increased Number Of Circulating Exosomes And Their Microrna Cargos Are Potential Novel Biomarkers In Alcoholic Hepatitis, Fatemeh Momen-Heravi, Banishree Saha, Karen Kodys, Donna Catalano, Abhishek Satishchandran, Gyongyi Szabo Sep 2015

Increased Number Of Circulating Exosomes And Their Microrna Cargos Are Potential Novel Biomarkers In Alcoholic Hepatitis, Fatemeh Momen-Heravi, Banishree Saha, Karen Kodys, Donna Catalano, Abhishek Satishchandran, Gyongyi Szabo

Gyongyi Szabo

BACKGROUND: It has been well documented that alcohol and its metabolites induce injury and inflammation in the liver. However, there is no potential biomarker to monitor the extent of liver injury in alcoholic hepatitis patients. MicroRNAs (miRNAs) are a class of non-coding RNAs that are involved in various physiologic and pathologic processes. In the circulation, a great proportion of miRNAs is associated with extracellular vesicles (EVs)/exosomes. Here, we hypothesized that the exosome-associated miRNAs can be used as potential biomarkers in alcoholic hepatitis (AH).

METHODS: Exosomes were isolated from sera of alcohol-fed mice or pair-fed mice, and plasma of alcoholic hepatitis …


Supporting Recovery In The Deaf Community: Creating Continuum Of Behavioral Health Care In Central Massachusetts, Melissa L. Anderson, Neil S. Glickman, Lisa Mistler, Susan Jones, Monika E. Kolodziej, Douglas M. Ziedonis Jan 2015

Supporting Recovery In The Deaf Community: Creating Continuum Of Behavioral Health Care In Central Massachusetts, Melissa L. Anderson, Neil S. Glickman, Lisa Mistler, Susan Jones, Monika E. Kolodziej, Douglas M. Ziedonis

Melissa L. Anderson

Across the U.S., there is a paucity of mental health and substance abuse services for Deaf individuals. Without the availability of communication accommodations and specialized clinical expertise, Deaf individuals seeking behavioral health services contend with access limitations, misdiagnoses, and superficial treatments. Moreover, while the assessment and treatment of co-occurring disorders and the infusion of trauma-informed care are key components of effective treatment in the mainstream literature, the investigation and application of these initiatives to the Deaf population has not yet occurred. The proposed poster will outline the current state of specialized behavioral health services for Deaf individuals in Central Massachusetts, …


Managing Uncertainty In Young-Onset Parkinson's Disease, Michael J. Ravenek Jun 2014

Managing Uncertainty In Young-Onset Parkinson's Disease, Michael J. Ravenek

Electronic Thesis and Dissertation Repository

Typically considered a disease of old-age, Parkinson’s disease can affect those younger in life, i.e., before the age of 55, when it is referred to as young-onset Parkinson’s disease (YOPD). Using constructionist grounded theory, this research sought to understand how, and why, individuals with YOPD became informed about their disease over time. A total of 39 individuals, who self-identified as living with YOPD, took part in this study which was organized according to four cycles of data collection. These cycles utilized focus groups, in-depth interviews and a private online discussion board, supplemented by 14 autobiographies written by individuals living with …