This qualitative study focuses on the experiences of adults with Charcot-Marie-Tooth disease (CMT), a neuromuscular condition, and explores what living with this disease encompasses. The study is structured around two fundamental research questions that amount to people's experiences regarding how (in which areas) the disease affects them, and how they continuously deal with it. In order to address the research questions, data gathered from participants was qualitatively analysed, using grounded theory methodology. The study culminated in the formulation of a substantive grounded theory as to how affected people manage the disease's manifestations in order to optimise their continuous adaptation and well-being. A tripartite of concerns comprised the core concern, whereas the basic social psychological process of engaging with CMT emerged as the core strategy used by affected people to deal with the concerns. The core's three sub processes constituted three mostly sequential stages that CMT-affected people pass through in their adaptation to the disease. The identified theory and existing stage models of adaptation to chronic illnesses and disabilities were juxtaposed and discussed. The three stages were compared to and integrated with the relevant literature. These actions revealed that there are a number of new formulations and processes contained in all three stages, and that the first and last stages (orientating and optimising) are themselves unique. It emerged that there is no theoretical end-point to the adaptation process, but that a relative saturation point amounted to a variant of an outcome, called qualified wellness. For most, the core strategy was successful in resolving the main concern. A few, however, still experienced fear and agony about inheritance and dependency issues. This study contributes, via the route of knowledge and insight empowerment, to the well-being of people with CMT, including those who are struggling but do not know that they have this disease. Broadening of insight may also benefit medical help professionals and streamline service delivery. / Psychology / D. Litt. et Phil. (Psychology)

In order to obtain a closer look into the psychosocial impact of chronic conditions, symptom severity, loss of resources, and demoralization were investigated through a mediation analysis. The function and implication of social support was also explored within the circumstances of chronic conditions. Lastly, symptom chronicity was probed as an influential element in the understanding of the consequences of being chronically ill. Participants were 200 men and women, with a mean age of 46 years, and the dataset came from the VOICE (Verification of Illness and Coping Experience) survey. The concepts of Conservation of Resources (COR) theory and Demoralization Syndrome were utilized to portray the underlying processes experienced by individuals with chronic condition. Analyses between symptom severity and demoralization via loss of resources as the mediator were statistically significant. Symptom chronicity did not interact with symptom severity on predicting loss of resources, but analyses showed that individuals with less symptom chronicity reported both larger loss of resources and demoralization. Social support was confirmed as a moderator, buffering the effects of symptom severity on loss of resources. Exploratory analyses with the inclusion of both symptom severity and chronicity as the predictor variable and the use of age as a moderating factor at the prediction of loss of resources was statistically significant, showing that when symptoms were more severe and chronic, younger participants experienced more losses than older participants. Additionally, when age was included as a moderator of the effect of symptom chronicity and severity on the prediction of social support, it was indicated that when symptoms were less chronic and severe, the average perception of social support was higher among younger participants, but, on the other hand, when symptoms were more chronic and severe, younger participants suffered an abysmal drop in their social support perception. In light of the aforementioned results, risk, protective, and developmental aspects are discussed, along with implications for health care providers.

CoordenaÃÃo de AperfeiÃoamento de Pessoal de NÃvel Superior / ApÃs duas dÃcadas dos primeiros registros da SÃndrome da ImunodeficiÃncia Adquirida (Aids) no Brasil, a assistÃncia à saÃde de pessoas com HIV/Aids ainda à um desafio. Nesse contexto, discute-se a necessidade de efetivar uma polÃtica de atenÃÃo integral a essa populaÃÃo, em especial à saÃde bucal, sendo que o Programa de SaÃde da FamÃlia (PSF) representa uma possibilidade potencial de enfrentamento desse problema. Este estudo tem como objetivo caracterizar as estratÃgias polÃticas e organizacionais da atenÃÃo odontolÃgica a pessoas vivendo com HIV/Aids no MunicÃpio de Fortaleza, CearÃ, e verificar a existÃncia de assistÃncia odontolÃgica na rede bÃsica do MunicÃpio de Fortaleza a pessoas portadoras da doenÃa. A metodologia consistiu, primeiramente, em pesquisa qualitativa documental baseada em revisÃo sistemÃtica da literatura e documentos tÃcnicos do MinistÃrio da SaÃde, do Estado do Cearà e do MunicÃpio de Fortaleza. No segundo momento, optou-se pelo estudo quantitativo, usando como fonte de dados secundÃrios o Sistema de InformaÃÃo de Agravos de NotificaÃÃo - SINAN e, por fim, uma descriÃÃo da realidade por meio da aplicaÃÃo de um questionÃrio a 186 cirurgiÃes-dentistas (CDs) inseridos no PSF de Fortaleza. A anÃlise baseou-se em estatÃstica descritiva, utilizando tabelas e mapas temÃticos para possibilitar uma distribuiÃÃo espacial da doenÃa em Fortaleza, alÃm da anÃlise documental. Encontrou-se pouca documentaÃÃo oficial (polÃticas e diretrizes) relacionada à atenÃÃo a saÃde bucal de pessoas com HIV/Aids, em especial, na esfera federal, que tem como principal material disponÃvel artigos e manuais, em sua maioria, relacionados à biosseguranÃa e a lesÃes bucais oportunistas. No nÃvel municipal, encontrou-se a maior parte da documentaÃÃo oficial. Observou-se que, atà 2007, o nÃmero de pessoas com HIV/Aids vivas residentes em Fortaleza foi de 3.311 e que essas pessoas residem distribuÃdas por todo o MunicÃpio. Constatou-se que mais da metade (58,06%) dos CDs que trabalham no PSF tÃm conhecimento sobre a presenÃa de pessoas portadoras de HIV/Aids, entretanto, apenas 29,57% confirmaram ter atendido essa demanda na unidade onde trabalham. O atendimento odontolÃgico destinado a esse mesmo pÃblico nÃo ocorreu igualmente em todo o municÃpio de Fortaleza, sendo concentrado mais em alguns locais, destacando-se a Secretaria Executiva Regional II. Conclui-se que, apesar do Programa Nacional de DST/Aids ser reconhecido internacionalmente, hà a necessidade de avanÃar na discussÃo sobre a saÃde bucal dessa populaÃÃo e que a assistÃncia odontolÃgica a pessoas com HIV/Aids nÃo està consolidada como aÃÃo de saÃde bucal do PSF, embora jà exista uma polÃtica municipal direcionada para esse fim, indicando a necessidade de reorganizaÃÃo e reorientaÃÃo da assistÃncia odontolÃgica a pessoas com HIV/Aids. / Two decades following the first cases of the Acquired Immunodeficiency Syndrome (Aids) registered in Brazil, health care for individuals living with HIV/Aids is still a significant challenge. Within this context, the need to implement an integrated health policy for this group has been frequently discussed. This is particularly relevant for oral health services, where the Family Health Program (PSF-Programa SaÃde da FamÃlia) offers a potential tool to address this issue. This study has the objective of examining the political and organizational oral health strategies for people with HIV/Aids in the municipality of Fortaleza, Cearà state, and verifying the extent of oral care services in the municipal basic health structure. The methodology consisted of a qualitative and documentary study based on a systematic review of the literature and technical guidelines issued by the Ministry of Health and the secretariats of the State of Cearà and Municipality of Fortaleza. Additionally, the researchers used a quantitative approach using secondary data from the National Notifiable Diseases Health Information System (SINAN - Sistema de InformaÃÃo de Agravos de NotificaÃÃo). Finally, a snapshot of current conditions was taken by means of a questionnaire applied to 186 dental surgeons (DS) working in the PSF in Fortaleza. Analysis was undertaken using descriptive statistics, in particular tables and thematic maps to display the spatial distribution of the disease in Fortaleza, in addition to the literature review. Relatively little official documentation was found (policies and technical guidelines) relative to the oral health services for people living with HIV/Aids, especially at the federal level which only has articles and manuals available, mostly dealing with biosecurity and opportunistic oral lesions. The majority of official documentation was found at the municipal level. The study showed that until 2007, there were 3,311 people living with HIV/Aids in Fortaleza and that these individuals reside throughout the municipality. It was also determined that over half (58.06%) of the DS working in the PSF are aware of the presence of people with HIV/Aids in their working area, yet only 29.57% affirmed that they had treated members of this group in their health unit. The oral health care offered to this group was not equally distributed in the municipality; rather it was concentrated in a few locations, particularly the Executive Secretariat of Region II. It has been concluded that, despite international recognition given to the Brazilian National STD/Aids Program, it is necessary to move forward the debate on oral health services offered to this population group and that the treatment given to people with HIV/Aids has not been consolidated as a key component of oral health services offered by the PSF. This goes against a municipal policy already in existence directed towards this goal, thereby indicating the need for the reorganization and reorientation of the oral health care available to people with HIV/Aids.

This qualitative study focuses on the experiences of adults with Charcot-Marie-Tooth disease (CMT), a neuromuscular condition, and explores what living with this disease encompasses. The study is structured around two fundamental research questions that amount to people's experiences regarding how (in which areas) the disease affects them, and how they continuously deal with it. In order to address the research questions, data gathered from participants was qualitatively analysed, using grounded theory methodology. The study culminated in the formulation of a substantive grounded theory as to how affected people manage the disease's manifestations in order to optimise their continuous adaptation and well-being. A tripartite of concerns comprised the core concern, whereas the basic social psychological process of engaging with CMT emerged as the core strategy used by affected people to deal with the concerns. The core's three sub processes constituted three mostly sequential stages that CMT-affected people pass through in their adaptation to the disease. The identified theory and existing stage models of adaptation to chronic illnesses and disabilities were juxtaposed and discussed. The three stages were compared to and integrated with the relevant literature. These actions revealed that there are a number of new formulations and processes contained in all three stages, and that the first and last stages (orientating and optimising) are themselves unique. It emerged that there is no theoretical end-point to the adaptation process, but that a relative saturation point amounted to a variant of an outcome, called qualified wellness. For most, the core strategy was successful in resolving the main concern. A few, however, still experienced fear and agony about inheritance and dependency issues. This study contributes, via the route of knowledge and insight empowerment, to the well-being of people with CMT, including those who are struggling but do not know that they have this disease. Broadening of insight may also benefit medical help professionals and streamline service delivery. / Psychology / D. Litt. et Phil. (Psychology)

Having a chronic illness may feel alienating, yet examination of the literature shows limited research on social connectedness and health. In order to contribute to the understanding of this impact of illness, I examined perceived levels of social connectedness in persons with chronic diseases (CD), functional somatic syndromes (FSS) and medically unexplained symptoms (MUS). A major focus of this study was to investigate the association of social connectedness with depression, anxiety, and general health in patients with ongoing symptoms of illness. Data collection was obtained through the use of four online surveys collectively known as VOICE (Verification of Coping, Illness and Experience). For the purposes of this study, five measures were used: the Social Connectedness Scale, Short Form Health Survey (SF-36), Patient Health Questionnaire depression scale (PHQ-8), Hopkins Symptoms Checklist (HSCL) and the Social Impact Scale. Participants were recruited through announcements via online message boards and support groups, as well as through the distribution of brochures in local medical practices. A total of 148 participants (80% female) completed all four surveys. Results indicated that the chronic illness groups did not significantly differ in social connectedness, although there was some indication that the FSS group felt more social isolation. Regression analyses indicated that, while accounting for socio-cultural and health factors, social connectedness was the strongest predictor of depression (β = - .43, p < .001), anxiety (β = -.48, p < .001) and general health (β = .34, p < .001) in chronically ill persons. The independent and robust relationship of social connectedness with psychological and physical health in individuals with chronic illness suggests that this is an important factor deserving of future research with important clinical applications.

Background Primary care practices in the United States (US) are currently constrained in their ability to deliver high quality care due to population aging, insurance expansion, and an increasing prevalence of chronically ill patients. The nurse practitioner (NP) workforce plays a critical role in meeting the growing demands for primary care, particularly in rural and underserved areas. NPs are also more likely to deliver care to clinically and socially complex populations such as high-need high-cost (HNHC) patients. HNHC patients are adults who suffer from multiple chronic conditions and experience additional functional, behavioral, or socioeconomic needs. Despite comprising only 5% of the US population, HNHC patients account for nearly half of total health care expenditures and over 90% of Medicare expenditures. HNHC patients with behavioral health diagnoses such as depression or substance abuse face heightened challenges managing their conditions and consequentially have higher preventable spending and emergency department (ED) utilization compared to the overall HNHC population. Significant policy attention has been placed on enhancing primary care practices as a strategy to improve outcomes and reduce costs in HNHC patients. Structural capabilities are features of primary care practices (e.g., after-hours care or care coordination) which are needed to deliver high quality primary care and chronic disease management. Yet, to date little research has been done on structural capabilities in primary care practices where NPs deliver care to HNHC patients. The overall purpose of this dissertation is to understand how to enhance primary care delivery and structural capabilities to improve outcomes for HNHC patients. We have achieved the following specific aims: (1) Establish a clear definition of HNHC patients, (2) Identify existing primary care and payment models used among HNHC patients and evaluate their impact on ED utilization and costs, (3) Evaluate structural capabilities in NP primary care practices located in Health Professional Shortage Areas (HPSAs), and (4) Analyze the association between NP practice structural capabilities and ED utilization among HNHC patients with behavioral health conditions. Dissertation Chapters and Key Findings Chapter One includes an introduction to the landscape of current primary care delivery, the role of the NP workforce in expanding access, and the unique challenges of delivering care to HNHC patients. This chapter also discusses the conceptual framework guiding the dissertation, the specific aims of each study, and how each study will fill a gap in the literature. Chapter Two (Aim 1) consists of a concept analysis of HNHC patients using the Walker and Avant framework. Three subgroups of HNHC patients were identified: adults over the age of 65 who suffer from multiple chronic conditions with functional or behavioral health needs, the frail elderly, and patients under 65 years old with a serious mental health condition or disability. Antecedents that predispose an individual to becoming a HNHC patient include challenges accessing timely care, low socioeconomic status, or unmet needs. Persistent high spending occurs as a result of poorly managed chronic diseases leading to acute exacerbations, preventable health service utilization, and fragmented care between the acute and primary care settings. Chapter Three (Aim 2) is a systematic review of studies conducted from 2000-2020 on primary care and payment models used with HNHC patients. About half of the primary care models evaluated in the systematic review (11 out of 21 studies) showed no significant difference in ED utilization among HNHC patients. Care coordination and care management (15 out of 21 studies) demonstrated both positive and negative associations with ED utilization and costs. Primary care models that demonstrated significant reductions in ED utilization had shared features, including frequent follow-up, multidisciplinary team-based care, enhanced access, and care coordination. Chapter Four (Aim 3) includes a cross-sectional study of NP survey data from 2018-2019 on practice structural capabilities linked with data on primary care shortages (i.e., HPSA designation). Bivariate analyses and multivariable regression models were used to compare NP characteristics and structural capabilities in HSPA practices compared to non-HPSA practices. The majority of NPs in our sample (61%) delivered care in HPSA practices. NP practices located in HPSAs were significantly more likely to deliver care coordination compared to non-HPSA practices. We found no significant difference in prevalence of registries, after-hours care, or shared communication systems. Chapter Five (Aim 4) is a study of cross-sectional NP survey data from 2018-2019 on practice structural capabilities linked with Medicare Part A and Part B claims to identify HNHC patients and ED utilization. Multivariable Poisson models were used to estimate the association between ED utilization and structural capabilities in practices serving HNHC patients with behavioral health conditions including depression, alcohol use, and substance use disorder. Care coordination was associated with decreased rates of ED utilization among the overall HNHC population and those with alcohol use, but not among HNHC patients with depression or substance use disorders. Shared communication systems were associated with decreased rates of all-cause and preventable ED utilization among HNHC patients with alcohol use and substance use disorders. Chapter 6 is a summary of findings across studies in this dissertation and will present the strengths, limitations, and contributions to science. This chapter will also discuss implications for policy, practice, and directions for future research. Conclusion HNHC patients face complex and wide-ranging medical, social, and behavioral health needs resulting in poor clinical outcomes and high costs. Enhancing primary care is an urgent goal for policymakers to improve disease management while reducing overall costs of care. Findings from these studies demonstrate that NPs practice in underserved areas and are significantly more likely to deliver care coordination in HPSA practices and to HNHC patients with behavioral health conditions. Care coordination has the potential to increase effectiveness of primary care delivery by tailoring models to target specific HNHC patients. Shared communication systems also show promise for improving primary care delivery and reducing ED utilization among HNHC patients with alcohol use and substance use disorders. Future research should continue to explore how structural capabilities may enable NPs to deliver timely, high quality, cost-effective primary care for HNHC patients.

MCur / Department of Advanced Nursing Science / Diabetes mellitus is a global health issue affecting people of all ages. It is defined as a non-communicable chronic disease caused by abnormal insulin production, impaired insulin utilization or both. Its prevalence and complications is increasing rapidly. The aim of this study was to assess knowledge of Diabetes mellitus chronic complications among diabetic patients in the Vhembe district of the Limpopo Province, South Africa. The study objectives were: to assess the knowledge of Diabetes mellitus chronic complications amongst diabetic patients; to determine the knowledge of diabetic patients regarding self-care practice, control and management of diabetes in the Vhembe District, and to identify challenges faced by diabetic patients regarding chronic complications of Diabetes mellitus in the Vhembe District A quantitative descriptive design was used. The study population was diabetic patients who were visiting the selected 4 hospitals, 2 health centers and 2 clinics were in Thulamela Municipality. Convenient sampling was used to sample 259 respondents (184(71%) females and 75(29%) males) and to select the 8 health care services. A structured, closed-ended selfadministered questionnaire in Tshivenda was used to collect data on the day that diabetic patients were coming for follow-up treatment, and after they had been attended to by the health care providers. Data were analyzed using the / NRF

The purposes of this study are: a) to understand the treatments compliance behavior of the patient with chronic disease at the behavioral level, particularly, the relationship between treatments compliance behavior and normative beliefs; b) develop a behavioral model of patient's treatments compliance behavior that could be used for predicting, combating, treating, tracking and controlling the treatments compliance behavior of the patients with chronic disease. Seventy-two patients from senior daycare centers in the Dallas area, who suffer or had suffered from at least, one chronic disease, participated in the study. Data gathering was conducted using paper-based questionnaire. The most significant finding of this study is the relationship between normative beliefs and the treatments compliance behavior of the patient with chronic disease. Normative beliefs were found to have significant impact on the treatments compliance intent and behavior of the patients with chronic disease. Another important finding showed that side-effects of prescribed treatments have little or no influence on the treatments compliance behavior of the patient with chronic disease. A relationship between the effectiveness of medicine, particularly, predictive medicine, and treatments compliance behavior was established. The design of the study was intended to provide coverages for a set of constructs that may be the interacting units in the environment of any chronic disease treatments decision. It depicts relational, information communications links between the constructs. The Imhonde model of treatments compliance behavior was designed to include cultural norms and other beliefs that are significant for real-time human ailments decisions behaviors. It is recommended that further studies may include the use of a larger population of participants from diverse cultures and localities in multiple states and countries, with the object of finding the differences that culture and local environments may have on the normative leaning for treatments compliance behavioral decisions in chronic disease cases.

No description available.

Text in Afrikaans / Summaries in Afrikaans and English / Vigs is 'n "sluipende moordenaar "_ Dit toon geen respek vir kultuur, status,ouderdom of geslag nie. Vigs veroorsaak 'n onnnatuurlike dood wat vriende en familie bedreig en vervreem, lank na die dood van die vigsslagoffer. Die navorsingsdoel van hierdie studie was om riglyne daar te stel vir die psigoterapeutiese hantering van die vigslyer en sy gesin. Die navorsing het getoon dat 'n stigma en skuldgevoelens rondom die vigslyer en sy gesin ontstaan het, en dat hulle direk verantwoordelik gehou word vir die siekte bloot omdat hulle betrokke is by mekaar. 'n Vraelys wat aspekte (soos dit uit die literatuurstudie geblyk het) inkorporeer, is opgestel en aan die vigslyer en sy gesin gegee om te voltooi. Van die belangrikste elemente wat na vore gekom het, is die vrees vir die onbekende, die stigma verbonde aan die siekte en die pad wat die siekte loop ten opsigte van naiwiteit en valse gerugte ten opsigte van die siekte. 'n Verdere hoofstuk fokus op die literatuur om die hoofaspekte van die probleem vas le stel, en sodoende riglyne vir 'n terapieprogram daar te stel om die vrese te onderskep en die familie te help om die siekte beter te begryp_ Die doel is om die samelewing te laat begryp dat vigs nie 'n kulturele of "klas" siekte is nie, maar dat dit alle lae van die samelewing kan tref. 'n Afdeling is gewy aan 'n wye verskeidenheid terapeutiese tegnieke wat geimplimenteer kan word tydens hulpverlening aan die vigslyer en sy gesinslede. Verder verskaf hierdie studie ook riglyne om ondersteuning en hulp aan die vigslyer en sy gesin te bied, om sodoende hulle selfkonsep te verbeter. / Aids is a "stalking killer''. It has no respect for culture, breeding, age or sex. It is an unnatural death which offends and alienates many friends and family, even after the victim has died. A questionnaire incorporating important aspects of the cause and effect of aids was compiled and given to the aids sufferers and family to complete. From the responses it was clearly evident that the fears of the unknown, the stigma attached to the victim's close associates and family, was a problem, and the route course of incredible naive and false rumours. A chapter of the research focused on literature to establish what was the major aspects of the problem expressed by the media. Guidelines were provided whereby therapy could address and allay these fears to assist the family to better understand the illness and it's effects. This chapter has in mind to provide the Psychologist with guidelines to provide therapy to both the victim and the family in this regard. This study confirms that the survivors are the actual victims. / Educational studies / M.Ed. (Voorligting)