In the United States alone, disability touches the lives of a tremendous amount of people. An increased prevalence of chronic illness, coupled with an aging population means it is likely and perhaps inevitable that everyone will experience disability in one way or another over the course of their lifetime. However not everyone who is disabled is recognized as such. Culturally, the narrative of “the healthy disabled person,” – or someone who is healthy, permanently, predictably, and visibly disabled renders many people with chronic and episodic pain, fatigue, and illness as unrecognizable as disabled. Even though increasing numbers of disability scholars have begun to acknowledge that the embodied experiences of disability are far more fluid than the theoretically static divisions between healthy or ill, abled or disabled allow for, there has been little research that explores the experiences that exist in between these spaces In this dissertation I use narrative analysis to examine “who counts” as disabled in the United States, and why by exploring the interconnected narratives of disability at the cultural, institutional, and personal levels of society. In the first of three substantive chapters I examine cultural narratives about contested illness published in The New York Times between 1999 and 2016. I argue that stigmatization of episodic illness and disability occurs when the reality of lived experiences contradict the cultural assumptions and expectations; namely that health and illness, disability, and ability are natural, discrete, and static states of being for physical bodies. In the second chapter I examine institutional narratives of disability as they are told in town hall meetings for the Americans with Disabilities Amendment Act. I argue that these narratives serve to distinguish between morally good people with disabilities who deserve to be protected and accommodated in the workplace, and those who would use disability as an excuse to take advantage of their employers. In the final substantive chapter, I examine how women with chronic and contested illness reconstruct their identities through narrative in an online forum. I argue that these online spaces are an important site from which these women are able to counter the stigmatization and isolation that results from the dominant narrative that portrays them as morally corrupt. In each of these three chapters I find that the shifting and unpredictable reality of bodies that appear normal, healthy, and abled sometimes, and periodically ill, impaired, and disabled others are at best culturally unrecognizable as disabled and at worst, subject to disbelief and hostility regarding their claims as such. I argue that in order to overcome the stigmatization and disbelief of invisible and episodic disability, we need a cultural reorientation towards the story of disability; one that moves away from the belief that it is something that only happens to a small number of people in society, and towards an understanding of disability as an inevitable experience for the majority of the population; and in doing so works towards a more inclusive society that is designed to meet the needs of an ever changing and diversifying population.

Polycystic ovary syndrome (PCOS) is a chronic illness that affects approximately five million premenopausal women in the United States and is associated with significant cosmetic, reproductive, metabolic, and psychological consequences. Despite its prevalence, few studies have explored the lived experiences and illness perceptions of women living with PCOS. Identifying illness perceptions of women living with (WLW) PCOS is important, because mounting research suggests that a person's perceptions of their chronic illness and its management determine that person's coping behaviors (e.g., adherence, self-management) and, consequently, illness outcomes. In this dissertation, the Common Sense Model (CSM) is used as a framework to identify the illness perceptions of PCOS held by WLW the syndrome. As such, this dissertation is the first to test the ecological validity of the CSM in a population of women diagnosed with PCOS. In addition, the relationship between illness perceptions and (1) infertility, a common symptom of the syndrome, and (2) health-related quality of life (HRQoL) is explored. Lastly, this study makes a novel contribution to the literature by describing one of the first samples of WLW PCOS recruited through a social networking site. This includes a discussion of the participant's demographic information, fertility experiences, and HRQoL. This is a two-phase mixed methods study. Phase one consisted of an online quantitative survey capturing data on 376 participants' demographic information and medical history. Data were also collected on each participant's HRQoL using the SF-36, a generic, well-validated measure of the phenomenon. Of the 376 survey participants, 34 were interviewed via phone or video chat in the fall 2013 and spring 2014 semesters. Quantitative data were downloaded from Qualtrics® and analyzed using SAS statistical software version 9.3. In this analysis, descriptive statistics were generated to describe sample characteristics and SF-36 domain scores were calculated for each participant. In the qualitative analysis, data were analyzed through a series of sorting techniques and transcripts were imported into NVivo 10 and subjected to content analysis. The mean age of survey participants was 31.8 years (SD=5.8). Respondents were primarily non-Hispanic (92.5%), white (88.3%), straight (94.4%), and married (73.4%) with a college education (64.1%). On average, participants reported living with PCOS for 7.6 years (SD=6.1). Approximately half of the sample reported having biological children (47.9%) and currently trying to conceive (42.1%), and most participants reported a history of infertility (70.7%). In addition, almost half of the total sample reported heights and weights that placed them in the morbidly obese category (BMI>35). Lastly, a history of depression (63.6%) and anxiety (68.6%) was common among participants. Few survey participants reported their general health as being excellent (2.6%) or very good (27.4%). Similarly, women reported the lowest levels of functioning on the dimension of vitality, meaning that, in general, women reported feeling tired and being low in energy. Conversely, women reported the highest scores on the dimensions of physical functioning and role limitations due to physical health, meaning that, in general, women did not report that their health limited their physical abilities or caused problems with work or other daily activities. Interview findings suggest that WLW PCOS generally have illness perceptions of the syndrome that are consistent with the domains identified in the CSM. In addition, it was found that, in relation to their illness cognitions, WLW PCOS described the extent to which they felt they had a comprehensive understanding of the syndrome, a phenomenon labeled illness coherence. Similarly, participants identified PCOS as a common condition (i.e. labeled perceived prevalence). Lastly, a number of relationships were identified between illness perceptions and (1) infertility status and (2) HRQoL scores. Overall, this dissertation identifies a number of implications for patient education, provider education, clinical practice, and policy improvements. Examples include addressing (1) unmet information needs, (2) significant psychological morbidity and unmet mental health needs, (3) breastfeeding challenges and need for breastfeeding support, (4) poor quality of care and low patient satisfaction, and (5) limited access to care - all among women living with PCOS.

PhD / People with a chronic illness, such as Parkinson’s disease, often live in the community for many years while the illness becomes progressively more debilitating. Little is known about how such people control the impact the disease has upon their various roles in life. This study employed naturalistic qualitative research methods to investigate how people with Parkinson’s disease and their partners continue to actively participate as members of their social community. Using in-depth semi-structured, focused interviews, participants with Parkinson’s disease and their partners were asked to name and describe roles that occupied their daily activity. They were asked about their most significant occupational roles, what they did in these roles, the knowledge or strategies they employed to deal with barriers to occupational role performance, and the personal meaning such roles held. Four basic themes evolved from the data: the impact of the disease on occupational role performance, or ‘doing’, secondary personal limitations to occupational role performance, secondary social limitations to occupational role performance and cumulative barriers to occupational role performance. Loss of control over choice and manner of engagement in occupational roles was a significant element of all four themes. Sense of self and sense of social fit were identified as major elements that informed participants’ perceptions of control. Participants described a range of diverse responses that they used to actively restore personal control of occupational performance in the face of degenerative illness. Learning new coping styles appeared to be underpinned by a personal set of rules or ‘blueprint’, despite professional input. This blueprint was actualised through a problem identification, problem solving and active engagement cycle that was termed a cycle of control. A conceptual model of a cycle of control was proposed as the final stage of the research. The model represented a way of describing how participants acted to restore a sense of personal control once a specific barrier to occupational role performance had been perceived. The findings of this study support the notion that people with chronic illness, such as Parkinson’s disease, are active and knowledgeable participants in health care, and have occupational histories and experiences that they harness when dealing with barriers to performance. Moreover, the findings demonstrate that people with chronic illness work in tandem with significant role partners to constantly maintain the valued partnership in meaningful occupational roles as the disease progresses. A greater understanding of how people with chronic illness and their partners strive to maintain a sense of personal control can enable occupational therapists to work effectively as ancillary partners in care. A greater understanding of the way in which role partners work together to maintain occupational integrity in their lives would be central to assessment and intervention for community programs for people with chronic illness.

Objectives <p>This qualitative study explored the experiences of patients suffering from cancer and other chronic conditions and those of their practitioners during a Reiki treatment. Specific research objectives were to: 1) better understand how participants describe healing, 2) document consecutive therapeutic encounters (i.e. Reiki sessions) as experienced by patients and practitioners over time and, 3) identify meaningful benefits and other relevant outcomes from both perspectives. <p>Materials and Methods p*A convenience sample of four patient-practitioner pairs consented to participate in the study. Data was collected over 12 months via interviews with both the patients and Reiki practitioners. Hour long interviews were conducted before and after their participation in the study. Ten minute telephone interviews were done no longer then 48 hours after each Reiki session to capture participants experiences with that particular session. All interviews were audio taped and transcribed. A phenomenological approach was used for the data analysis. <p>Findings <p>This qualitative study attempted to longitudinally explore the experiences and practices of Reiki from both the patients and the practitioners perspectives. Illness specific symptom relief as well as mental and emotional effects such as decreased anxiety and a better ability to handle stressful situation were experienced by the patients. Spiritual awakening and connection was attributed to the Reiki sessions and the relationship established with their practitioner. Energy directed releases during the Reiki sessions were quite common. Some practitioners experienced different sensory experiences that they attributed to the Reiki energy. The experiences ranged from feeling the energy, temperature changes to seeing different objects during the Reiki treatment. Many of the experiences described by the participants support what has been written in the literature. However, certain concepts such as the evolving concept of healing as well as the altered perception of illness are newer concepts which are beginning to surface. <p>Conclusion <p>Patients and practitioners experiences helped to gain insight in to the therapeutic relationship and their evolving definitions of healing. Several outcomes were noted on the physical, mental and emotional levels of all participants. This information will help lay the groundwork for future research on Complementary therapies including Reiki. <p>Acknowledgement <p>The Department of Community Health and Epidemiology Devolved Scholarship Fund University of Saskatchewan and Hope Cancer Help Centre, Saskatoon Saskatchewan supplied funding.

This study aims to highlight the crisis and adjustment process in individuals who suffered myocardial infarction. The research questions focus on the informants’ experiences of the crisis and life adjustment process, and illuminate the coping strategies that the informants describe important. By using a narrative method and applyingthe crisis theory and coping theory as theoretical guidelines, this study endeavors to illuminate individuals' experiences of the disease from their own perspective. The empirical material consists of four life stories gatheredthrough semi-structured interviews. The result indicates general patterns that characterize the course of the diseaseat the same time as individual aspectsof the crisis process are shown, where individual coping strategies have proven necessary through the different phases. The individual aspect on how one cope with crisis seems to depend on personality and life situation. Major life adjustments have proven necessary in the course of the disease. Changes and priorities seem to be revalued through the different phases, along with a greater appreciation for life. Importance of social support is being emphasized; however the most important element appears to be their own, personalefforts and transformation.

The Brofenbrenner(1979) ecological theory was applied to examine the relationship between parent and child depressive mood and the moderation of relational quality at two levels; 1) parent-child (within family) and 2) family-social support (outside family) levels. It was hypothesized that both levels would buffer the predictive association of parent to child depressive mood. At the first level, the parent-child depressive mood association was qualified by an interaction with relatedness (categorized as inadequate and adequate) that approached a conventional level of significance, R2 = .023, F(1,101) = 2.77, p = .099. At the second level, the addition of social support as a moderator yielded a R2 =.028, F(1,101) = 3.11, p = .081. Exploratory analyses were performed to clarify each moderation. The findings suggest that relational quality within and outside the family have the potential to serve as protective factors in regards to depressive symptoms for children with asthma.

Objectives <p>This qualitative study explored the experiences of patients suffering from cancer and other chronic conditions and those of their practitioners during a Reiki treatment. Specific research objectives were to: 1) better understand how participants describe healing, 2) document consecutive therapeutic encounters (i.e. Reiki sessions) as experienced by patients and practitioners over time and, 3) identify meaningful benefits and other relevant outcomes from both perspectives. <p>Materials and Methods p*A convenience sample of four patient-practitioner pairs consented to participate in the study. Data was collected over 12 months via interviews with both the patients and Reiki practitioners. Hour long interviews were conducted before and after their participation in the study. Ten minute telephone interviews were done no longer then 48 hours after each Reiki session to capture participants experiences with that particular session. All interviews were audio taped and transcribed. A phenomenological approach was used for the data analysis. <p>Findings <p>This qualitative study attempted to longitudinally explore the experiences and practices of Reiki from both the patients and the practitioners perspectives. Illness specific symptom relief as well as mental and emotional effects such as decreased anxiety and a better ability to handle stressful situation were experienced by the patients. Spiritual awakening and connection was attributed to the Reiki sessions and the relationship established with their practitioner. Energy directed releases during the Reiki sessions were quite common. Some practitioners experienced different sensory experiences that they attributed to the Reiki energy. The experiences ranged from feeling the energy, temperature changes to seeing different objects during the Reiki treatment. Many of the experiences described by the participants support what has been written in the literature. However, certain concepts such as the evolving concept of healing as well as the altered perception of illness are newer concepts which are beginning to surface. <p>Conclusion <p>Patients and practitioners experiences helped to gain insight in to the therapeutic relationship and their evolving definitions of healing. Several outcomes were noted on the physical, mental and emotional levels of all participants. This information will help lay the groundwork for future research on Complementary therapies including Reiki. <p>Acknowledgement <p>The Department of Community Health and Epidemiology Devolved Scholarship Fund University of Saskatchewan and Hope Cancer Help Centre, Saskatoon Saskatchewan supplied funding.

Bakgrund: Hepatit C är en leverinflammation som orsakas av ett virus. HCV räknas som blodburen smitta. Den största riskgruppen för att få smittan är sprutnarkomaner, vårdpersonal och patienter som fick smittan i vårdsammanhang, innan blod som användes inom sjukvården testades på viruset. Syftet: Att beskriva hur människor med kronisk hepatit C upplever att leva med sin sjukdom och hur bemötandet från sjukvården och omgivningen upplevs. Metod: Litteraturöversikt med kvalitativ ansats. Sju vetenskapliga, kvalitativa artiklar användes och en manifest innehållsanalys genomfördes. Resultat: Informanterna upplevde en förlorad tro på den egna kroppsförmågan och en sämre livssituation på grund av de fysiska sjukdomssymtomen. Att leva med hepatit C gjorde att framtiden kändes osäker och oförutsägbar. Familjen var ett viktigt stöd. De upplevde ofta negativa attityder och bemötande från omgivningen och sjukvården. Informanterna valde oftast att inte avslöja sin sjukdom på grund av rädsla för social utstötning. Sjukvårdens bemötande upplevdes ofta som fördomsfull och dömande av informanterna. Slutsats: Sjukdomens fysiska symtom var tidvis så dominanta att hela personens liv påverkades. Omgivningens attityder kunde leda till utsatthet och utanförskap. Det fördomsfulla bemötandet medförde att många drabbade distanserade sig från sjukvården och fattade egna beslut kring sin vård. Bristen på kunskap om sjukdomen hos allmänheten och i sjukvården är viktig att uppmärksamma för att minska lidande.

<p>Bakgrund: Hepatit C är en leverinflammation som orsakas av ett virus. HCV räknas som blodburen smitta. Den största riskgruppen för att få smittan är sprutnarkomaner, vårdpersonal och patienter som fick smittan i vårdsammanhang, innan blod som användes inom sjukvården testades på viruset.</p><p>Syftet: Att beskriva hur människor med kronisk hepatit C upplever att leva med sin sjukdom och hur bemötandet från sjukvården och omgivningen upplevs.</p><p>Metod: Litteraturöversikt med kvalitativ ansats. Sju vetenskapliga, kvalitativa artiklar användes och en manifest innehållsanalys genomfördes.</p><p>Resultat: Informanterna upplevde en förlorad tro på den egna kroppsförmågan och en sämre livssituation på grund av de fysiska sjukdomssymtomen. Att leva med hepatit C gjorde att framtiden kändes osäker och oförutsägbar. Familjen var ett viktigt stöd. De upplevde ofta negativa attityder och bemötande från omgivningen och sjukvården. Informanterna valde oftast att inte avslöja sin sjukdom på grund av rädsla för social utstötning. Sjukvårdens bemötande upplevdes ofta som fördomsfull och dömande av informanterna.</p><p>Slutsats: Sjukdomens fysiska symtom var tidvis så dominanta att hela personens liv påverkades. Omgivningens attityder kunde leda till utsatthet och utanförskap. Det fördomsfulla bemötandet medförde att många drabbade distanserade sig från sjukvården och fattade egna beslut kring sin vård. Bristen på kunskap om sjukdomen hos allmänheten och i sjukvården är viktig att uppmärksamma för att minska lidande.</p><p> </p><p> </p>

A variety of psychotherapies have been demonstrated to be efficacious and effective treatments for depression. The cost of psychotherapy, however, and its low availability in some contexts pose significant treatment barriers for many depressed individuals. Based on the idea that peers (i.e., individuals who have successfully recovered from similar problems) may be uniquely able to provide empathy and support to those currently receiving treatment, some community mental health centers have implemented peer treatment models that employ recovered former clients as cost-effective adjunct providers. The effectiveness of these and other peer-administered interventions (PAIs) has not been well-established. The current study is a meta-analysis of the existing outcome research on PAIs for depression. Twenty-six studies were identified as eligible for inclusion and yielded 30 between-groups effect sizes and 29 pre-post PAI effect sizes. Study characteristics and methodological quality were coded and random-effects models were used to calculate and compare mean effect sizes. PAIs produced significant pre-to-post treatment reductions in depression symptoms that were comparable to those found in well-established professionally-administered interventions (.4554). In direct comparisons, PAIs performed as well as professionally-administered treatments (.0848). but not significantly better than treatment-as-usual (e.g., periodic physician check-ins or availability of community mental health services) and wait-list control conditions (.0978). These findings did not change after adjusting for the moderate degree of publication bias in the data. Moderation models revealed that professionally-co-administered PAIs produced significantly worse outcomes than those that were purely peer-administered, and that educational/skills-based PAIs (but not supportive PAIs) produced better outcomes compared with professional treatments. Limitations of this analysis included the heterogeneity of the included interventions and the lack of data on mediators and moderators. Still, these findings suggest that PAIs have promise as effective depression treatments and are worthy of further study.