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The atypical college experience for students with chronic illnesses

Description

With the advancement of modern technology, antibiotics and vaccinations have allowed humans to live longer. Deadly infections like strep throat and measles are now considered an inconvenience. The main reason

With the advancement of modern technology, antibiotics and vaccinations have allowed humans to live longer. Deadly infections like strep throat and measles are now considered an inconvenience. The main reason for this phenomenon is the medical revolution of the 20th century. Although Alexander Fleming discovered penicillin in 1929, the full potential of antibiotics was not recognized until the 1940’s. This decade marked the commercialization of penicillin and opened possibilities for new classes of medications like corticosteroids. By the 21st century, pharmaceutical companies perfected the craft of antibiotics and designed them to treat specific infections. Consequently, as humans live longer, chronic illness has become more prevalent in contemporary society. According to the World Health Organization (WHO), chronic diseases are the “leading cause of mortality in the world representing 60% of all deaths”. Contrary to popular opinion, chronic diseases are more prevalent in developed nations such as Europe and America. By 2025, it is estimated that nearly half of the American population (49%) “will be affected by a chronic disease”.
My personal experience with chronic illness served as inspiration for my thesis. At the age of five, I was diagnosed with severe asthma. The following year, I was hospitalized with pneumonia for nearly a month. Despite my health issues, I had a supportive family and grew up relatively well. During my freshman year of college, I hardly experienced any respiratory or allergy problems. Unfortunately, this time period was very short-lived. Due to rapid expansion, the natural flora and fauna of the desert has changed significantly within the last decade. Throughout the remainder of my undergraduate experience, I had a series of respiratory relapses that resulted in numerous medical withdrawals. In addition to health problems, I discovered the college environment poses unique challenges for students with chronic illnesses. Ultimately, this led me to delve deeper into this topic for my thesis.

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Created

Date Created
  • 2019-05

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What Happens When They Become Disabled: An Examination of Adolescent Development While Living With Muscular Dystrophy

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,

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.

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Created

Date Created
  • 2016-12

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For Ashley: A Plan of Care for her Chronic Illness Illustrated in a Blog

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This past summer, I met a young lady named Ashley (name has been changed) who has been diagnosed with chronic Lyme disease. Upon researching this condition in greater detail, I

This past summer, I met a young lady named Ashley (name has been changed) who has been diagnosed with chronic Lyme disease. Upon researching this condition in greater detail, I learned that many medical providers who base their practice on the best evidence do not support treating patients for a chronic Lyme infection, the existence of which has not been substantially supported with research. I inquired about the process that led her to seek treatment for chronic Lyme disease at Jemsek Specialty Clinic. I learned that after many inaccurate diagnoses and years of unhelpful treatments, Ashley finally rejected the help offered by traditional medical doctors because she felt they were uncaring and inattentive, and went somewhere she felt heard. What she deserved, however, was both care that was based in scientific research and care that felt compassionate, as has been promoted by the nursing field. Despite the lack of a confirmed medical diagnosis, Ashley's day to day symptoms and struggles could be addressed with nursing care. I then constructed a nursing care plan to be implemented by Ashley's family and friends to help her feel her best and live a fulfilling life despite chronic disease. Patients should not have to choose between a healthcare provider who utilizes the strongest scientific evidence and one they feel understands them, though many do. Nursing can unite these mindsets by alleviating the daily challenges patients face. Please see the website http://careplanforashley.blogspot.com

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Created

Date Created
  • 2014-05

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Westward Ho Needs Assessment: Developing Resources for Identified Chronic Medical Conditions

Description

An assessment of needs at the Westward Ho. A survey instrument was administered and data collected on chronic medical ailments. These data were used to inform a resource list for

An assessment of needs at the Westward Ho. A survey instrument was administered and data collected on chronic medical ailments. These data were used to inform a resource list for future development of education programs tailored to the population of the Westward Ho.

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Created

Date Created
  • 2013-05

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A Patient-Centered Approach to the Management of Chronic Illnesses

Description

Currently, the medical industry employs an acute treatment process centered on responsiveness and restoration. This method fails those with chronic illness who require disease management and proactivity. As a solution,

Currently, the medical industry employs an acute treatment process centered on responsiveness and restoration. This method fails those with chronic illness who require disease management and proactivity. As a solution, the medical industry has implemented programs focused on providing integrated, coordinated care. This project examines two primary models to accommodate chronically ill patients: Accountable Care Organizations (ACOs) and Patient Centered Medical Homes (PCMHs). Specifically, this paper examines the data from Pioneer and Medicare Shared Savings Program ACOs. In the aggregate, the data indicate that these programs have been unsuccessful due to several key issues: a lack of patient and physician engagement, failure to incentivize medical professionals and failed collaboration between both ACOs and PCMHs. Remedying these issues would improve the ability of both ACOs and PCMHs to provide integrated, comprehensive care to patients with chronic illnesses.

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Created

Date Created
  • 2015-05

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Why Pigs? An Analysis of the Use of Porcine Over Human-derived Enzymes via Digestion Simulation

Description

Enzyme Replacement Therapy (ERT) is a treatment often used for patients with disorders that affect the production of various enzymes within the body, such as Cystic Fibrosis and Fabry Disease.

Enzyme Replacement Therapy (ERT) is a treatment often used for patients with disorders that affect the production of various enzymes within the body, such as Cystic Fibrosis and Fabry Disease. ERT involves the use of artificially-produced enzymes, which can be derived from humans, pigs, and bacteria. Generally, enzymes derived from porcine and bacterial sources are much less expensive and more accessible than those derived from a human source. This, and the ethical implications that porcine enzymes carry, make the decision of choosing treatment simple to some and complex to others. Ethically, human-derived enzymes are often considered more ethical, while not conflicting with religious beliefs and practices as porcine-derived enzymes do.
In order to further compare porcine and human-derived enzymes, a determination of the enzyme effectiveness was done via digestion simulation. The digestion for both the human and porcine-derived enzymes consisted of three steps: oral, gastric, and intestinal. After the digestion, the absorbance for each enzyme class as well as a dilution curve of the formula used was read and recorded. Using the standard dilution curve and the absorbance values for each unknown, the formula and thus enzyme concentration that was lost through the reaction was able to be calculated.
The effectiveness of both the human and porcine enzymes, determined by the percent of formula lost, was 18.2% and 19.7%, respectively, with an error of 0.6% from the spectrophotometer, and an error of about 10% from the scale used for measuring the enzymes. This error was likely due to the small mass required of the enzymes and can be prevented in the future by performing the experiment at a larger scale.

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Created

Date Created
  • 2020-05

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Patient narratives of myalgic encephalomyelitis: situated knowledge for re/constructing healthcare

Description

Medical policies, practices, and definitions do not exist solely in the clinical realm; they show up in the lived experiences of patients. This research examines how people with the chronic

Medical policies, practices, and definitions do not exist solely in the clinical realm; they show up in the lived experiences of patients. This research examines how people with the chronic illness called myalgic encephalomyelitis (ME) define their own illness experiences. They have situated knowledge about their illness onset, search for care, and clinical encounters. Their knowledge complicates and challenges the existing norms in clinical practice and medical discourse, as the experience of searching for care with ME reveals weaknesses in a system that is focused on acute care. Patient narratives reveal institutional patterns that obstruct access to medical care, such as disbelief from clinicians and lack of training in chronic illness protocols. They also reveal patterns in physician behavior that indicate the likelihood of receiving effective care. These patient narratives serve as a basis for continued examination of ME as well as further reconstruction of medical practice and procedure.

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Created

Date Created
  • 2019

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Parent Caregivers of a Child with a Chronic Illness: Effects on Psychological Outcomes

Description

Over 25% of children in the United States suffer from a chronic illness, and close to 70% of all childhood deaths are due to chronic illness. Prevalence of childhood chronic

Over 25% of children in the United States suffer from a chronic illness, and close to 70% of all childhood deaths are due to chronic illness. Prevalence of childhood chronic illness continues to increase, and as a result, the pervasiveness of parents faced with stress associated with caregiving for their child with a chronic illness is also rising. The Stress Process Model (SPM) conceptualizes the caregiving experience as a multidimensional process influenced by the caregiving context, primary and secondary stressors, resources, and caregiver outcomes. Utilizing the SPM, the goals of this study were to examine the relations between caregiving stress (role overload and role strain) and resources (instrumental support, social support, and positive attitudes) and psychological outcomes (depression and anxiety) to determine whether resources moderated the associations between caregiving stress and psychological outcomes.

Participants included 200 parent caregivers of a child with a chronic illness. Participants responded to an online survey that measured demographics, role overload (Role Overload scale), role strain (The Revised Caregiver Burden Measure), instrumental support and social support (Medical Outcomes Survey), positive attitudes about caregiving (Brief Assessment Scale for Caregivers), depression (Patient Health Questionnaire-9), and anxiety (Generalized Anxiety Disorder scale-7). Pearson correlations and six hierarchical regression models were tested to examine caregiving stress, resources, and psychological outcomes.

Consistent with the study hypotheses, positive correlations between caregiving stress (role overload and role strain) and depression and anxiety were found. Negative correlations were found between resources (instrumental support, social support, positive attitudes) and depression and anxiety. Both instrumental support and social support had negative moderating effects on the relations between role overload and psychological outcomes (depression and anxiety). Positive attitudes also negatively moderated the relations between role strain and psychological outcomes. Thus, when participants reported high instrumental and social support, they also reported low depression and anxiety, even when role overload was high. Participants also reported low anxiety and depression when they reported high positive attitudes, even when role strain was high. Implications of these findings are discussed.

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Created

Date Created
  • 2020

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Couples coping with a childs chronic illness: effects of dyadic coping on stress and well-being

Description

The prevalence of chronic illness among children in the United States is on the rise (CDC, 2014). Having a child with a chronic illness can be a substantial source of

The prevalence of chronic illness among children in the United States is on the rise (CDC, 2014). Having a child with a chronic illness can be a substantial source of stress for a couple, including physical, emotional, and financial demands of caregiving as well as difficult decision-making regarding the child’s health (Mayo Clinic, 2015). Coping with such stressors can have a negative effect on the couple’s well-being, and, if not managed within the relationship, can lead to increased negative outcomes for both partners. Partners can, however, learn to cope with stress by engaging in the coping process together with dyadic coping (DC). Couples can engage in positive (i.e., supportive emotion-focused, supportive problem-focused, and delegated) or negative forms of DC. DC has been shown to mitigate stress for couples, while increasing reports of individual well-being (IWB) and relational well-being (RWB), but it has not been examined in the context of couples with a child with a chronic illness.

To bridge this gap, the present study examined how couples cope with general stress as well as stress associated with their child’s diagnosis of a chronic illness (CI-related stress) and whether positive DC and negative DC moderate association between stress (general stress and CI-related stress) and well-being (IWB and RWB). Consistent with hypotheses, there were significant main effects of both types of stress (general and CI-related stress) on both types of well-being (IWB and RWB). Contrary to the hypotheses that DC (positive DC and negative DC) would moderate the associations between both types of stress and both types of well-being, only one significant interaction was found between CI-related stress and negative DC on IWB. Implications of these findings are discussed.

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Created

Date Created
  • 2016

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Factors influencing teacher-driven parent-teacher communication about students with epilepsy

Description

Epilepsy is the most common chronic neurological condition in children and can have a significant negative impact on education. The current study aimed to examine factors that may influence the

Epilepsy is the most common chronic neurological condition in children and can have a significant negative impact on education. The current study aimed to examine factors that may influence the likelihood that a teacher will contact the parents of a student with epilepsy for information regarding the disorder and its impact within the school environment. Specific variables of interest included teacher knowledge about epilepsy and confidence when teaching at student with epilepsy, parent perceived knowledge about epilepsy, and parent socio-economic status. Variables were assessed through the previously developed Teacher Epilepsy Knowledge and Confidence Scales (TEKCS) as well as case vignettes. Overall findings suggest that teachers provided with a letter from a parent of a student with epilepsy are highly likely to contact the parent for more information regardless of the above mentioned factors. Additional supplemental analyses replicated previous findings indicating that special education teachers and teachers currently teaching a student with epilepsy possess more knowledge and confidence than general education teachers and those teachers who are not currently instructing a student with epilepsy. In addition, this study also examined the specific types of information teachers sought from parents. Study limitations, implications for practice, and future research directions are discussed.

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Created

Date Created
  • 2013