MSc(Med), Bioethics and Health Law, Faculty of Health Sciences, University of the Witwatersrand / The current exclusion criteria for accessing renal dialysis in South African public hospitals places great emphasis on the allocation of scarce resources. The case of Soobramoney at the Constitutional Court highlighted the ethical and legal implications of providing this scarce resource. Mr. Soobramoney was denied access to renal dialysis on the basis of scarce resources and he did not qualify for care due to not meeting the criteria set for renal care. The Soobramoney case was considered mainly on the basis of scarce allocation of resources and offering treatment on an emergency basis. It was argued by the appellant that the state had an obligation to provide him with the treatment in terms of s 27(3) read with s 11 of the Constitution (para 14). This report takes a different slant and looks at the quality of life argument for increasing access to renal dialysis for those denied it based on current South African protocols. In exploring this concept one would venture to offer a definition of ‘quality of life’ according to Brown as an overall sense of well-being. This includes an individual’s satisfaction with their own lives (Brown, 2007: 72). A health related quality of life extends the definition to include the way a person’s v health affects their ability to carry out normal social and physical activities (ibid). A case is made for increasing access by developing programmes to cater for those in need of enhancing their quality of life. This is what is being motivated for in cases similar to Soobramoney, especially those with comorbid disease. The quality of life argument is based on the fact that there are indications in literature that patients with end-stage renal disease rate their own quality of life to be as important as the quality of life of the general population. Furthermore, there is no indication that the elderly live more miserable lives when they are on dialysis. The idea of respect for persons is highlighted - respect for the autonomous choices patients make concerning how they live their lives and including respect for them towards the end of their lives. Finally, I reflect on some legal issues concerned with the Soobramoney versus the Minister of Health Kwa-Zulu Natal 1997.

The thesis that this dissertation aims to defend is: Certain self-management behaviours in End Stage Renal Disease are predicted by self-efficacy, patient activation, and psychological distress, and in turn predict clinical status. However, self-management is often oversimplified and poorly operationalised, in both the literature and in clinical practice, to adherence and 'good/bad' distinctions that may impede future investigations and interventions. End Stage Renal Disease (ESRD) is a chronic condition associated with significant morbidity and increased risk of death. It is commonly treated with haemodialysis, a life sustaining treatment that last approximately four hours, repeated in a healthcare centre or at home, at least three times a week. ESRD also necessitates adherence to a complex set of dietary and fluid intake guidelines, in addition to a complex medication regimen, if the person is to avoid a further increase in the risk of severe symptoms and death. Chronic illness self-management is more than just adherence to prescribed medical treatments however, and requires an individual to preserve their emotional wellbeing, maintain social support networks, and continue to function in a variety of social roles and situations. While this has long been recognised in the theoretical literature about self-management, these concepts are often not well translated into clinical practice or empirical investigations of self-management behaviour in ESRD. When operationalising self-management, some investigations treat the 'behaviour' element of self-management as being limited to dialysis, medication, and fluid adherence, or are ignored in favour of psychological correlates such as self-efficacy. A frequent criticism of the self-management literature is that self-efficacy is often treated as an outcome, rather than a psychological component of changes in behaviour, wellbeing, or clinical outcomes. The investigations presented in this dissertation seek to investigate self-management in terms of specific behaviours that go beyond adherence. In doing so, they explore two different types of self-management behaviour, here termed 'cooperative' and 'defensive' self-management. These behaviours can then be examined in relation to adherence and self-efficacy, as well as other theoretically related factors including patient activation, psychological distress, and illness perceptions. The first three chapters set out the background to the empirical investigations reported in this dissertation. Chapter one covers the background on ESRD and its treatment. Chapter two describes the current state of the conceptual and empirical literature concerning self-management. Chapter three combines a narrative review of empirical investigations into self-management in ESRD, and a review of publically available resources concerning self-management in ESRD. Chapter four describes the methods used in the following empirical chapters. Chapters five, six, seven and eight report original empirical investigations on self-management in ESRD. Chapter nine is a discussion of the combined findings, and their implications in the wider clinical and academic context. Chapter 5 presents the results of a series of focus groups conducted with people on in-centre haemodialysis for ESRD, and the healthcare professionals involved in their care. These explored what each group understood by 'self-management', the behaviours and tasks that were important, and the practical, social, and emotional facilitators and barriers. A series of interviews conducted with patients eighteen months later revisited these concepts, focusing on motivations for engaging in self-management behaviours. The combined findings revealed that patient and HCP concepts around self-management overlap, but have a different focus, with HCPs seeing self-management as being about adherence, and patients seeing it as a complex balancing act to maintain their health, emotional wellbeing, and social roles. HCPs identified some patients as 'good' and others as 'bad'. Chapter 6 presents the results of a cross-sectional investigation of self-management behaviour and theoretically related psychological factors, including self-efficacy and psychological distress. Self-management was operationalised using an available scale that covered a variety of the behaviours patients and HCPs identified as important in chapter 5, which included both 'cooperative' and 'defensive' subscales. Self-efficacy, patient activation, and psychological distress were related to 'defensive' behaviours, with higher levels of psychological distress being related to the performance of more defensive behaviours. Higher self-efficacy was related to less frequent performance of defensive behaviours. A novel finding was that psychological distress mediated the relationship between self-efficacy and self-management behaviours. The implication that some proactive self-management behaviours may be associated with poorer emotional wellbeing is discussed. Chapter 7 presents the results of an 18 month longitudinal study of self-management behaviour and clinical markers of adherence. It also reports a survival analysis in the same cohort followed up to 30 months. Higher frequency of cooperative self-management behaviours were associated with lower levels of adherence as indicated by clinical markers. This may be due to the dialysis units in which the study took place, and may in fact reflect how self-management support was conducted in the units at the time of the study. Higher self-efficacy was found to be associated with lower mortality over 30 months after controlling for factors such as age and residual kidney function, an original and potentially important finding. The findings in chapters 6 and 7 raised additional questions about how self-management behaviours are measured and what those measurements indicate. To further investigate, and lay the groundwork for a new scale and general guidelines on the operationalisation of self-management in ESRD, a series of cognitive interviews were conducted. These are reported in chapter 8. They were conducted with people on home haemodialysis, a population whose engagement in a whole range of self-management behaviours is likely to be high. The role of social and emotional factors in the scale and behaviours discussed was also explored. The chapter concludes with a series of suggestions for measuring self-management behaviour in ESRD. This dissertation will explore the concept of self-management for people on haemodialysis, the behaviours involved, and their relationship with psychosocial and clinical status.

Made available in DSpace on 2016-04-04T18:28:14Z (GMT). No. of bitstreams: 1 MARCIA CALIXTO DOS SANTOS.pdf: 1003356 bytes, checksum: c4b5e00e909e2559f64ab1568facdc7b (MD5) Previous issue date: 2013-12-11 / Chronic renal failure (CRF) is the gradual and progressive loss of kidney functions, which can promote severe restrictions and psychosocial impact into the individual?s life, even risking to lead her or him to death. Its high prevalence in the current context defines it as a worldwide public health problem. The present study aimed to evaluate the degree of association between adaptive efficacy, psychopathological symptoms and stress levels in chronic renal failure patients and verify whether these variables could predict their adaptive efficacy. We adopted the concept of adaptive efficacy, by Ryad Simon, a measure of the quality of the individual's responses to situations of their day-by-day. The sample was composed of 50 patients with chronic renal failure, of both sexes, attended hemodialysis unit of a general hospital inland city of S?o Paulo. The assessment instruments used were: EDAO-AR - Self-Report Scale of Adaptation, designed to evaluate the quality of the adaptation of the sector Affective-Relational (AR) and Productivity (Pr); EAS- 40 - Assessment Symptoms Scale-40, which assesses the severity of psychopathological symptoms according to four dimensions: psychoticism, obsessiveness-compulsiveness, somatization and anxiety; ISSL Lipp Stress Symptoms Inventory, which assesses the symptoms of stress in the psychological and physical, besides the person?s stress phase. The results suggested that the participants were divided into effectively adapted (76%) and poorly ineffectively adapted (24%). Regarding psychopathological symptoms, the average score was 0,41 (? 0,33) (cutoff 1[E1]); 56% showed no stress and 44 % had stress, in the Resistance Phase (34%) with predominant psychological symptoms of stress (73%). The values of the Spearman Rank Correlation (?) confirmed the initial hypotheses as they pointed to significant and negative associations between psychopathological symptoms and adaptive efficacy and between stress and adaptive efficacy; significant positive association between psychopathological symptoms and stress. The structural equations modeling (SEM) suggested that psychopathological symptoms predict psychological stress and adaptive efficacy, however physical stress and phases of stress are not depicted as predictors of adaptive efficacy. / A insufici?ncia renal cr?nica (IRC) consiste na perda gradativa e progressiva das fun??es dos rins, o que pode causar restri??es severas e impacto psicossocial ao indiv?duo, ou at? mesmo lev?-lo ? morte. Sua alta preval?ncia no contexto atual a define como um problema de sa?de p?blica em n?vel mundial. O presente estudo teve como objetivo avaliar o grau de associa??o entre a efic?cia adaptativa, os sintomas psicopatol?gicos e os n?veis de stress de pacientes renais cr?nicos e verificar se estas vari?veis poderiam predizer a sua efic?cia adaptativa. Adotou-se o conceito de efic?cia adaptativa, de Ryad Simon, uma medida da qualidade das respostas do indiv?duo ?s situa??es de seu dia-a-dia. A amostra ficou constitu?da por 50 pacientes com insufici?ncia renal cr?nica, de ambos os sexos, atendidos na unidade de hemodi?lise de um hospital geral do interior de S?o Paulo. Os instrumentos de avalia??o utilizados foram: EDAO-AR - Escala Diagn?stica Adaptativa Operacionalizada de Autorrelato, que permite avaliar a qualidade da efic?cia adaptativa do setor Afetivo-Relacional (A-R) e Produtividade (Pr); EAS-40 - Escala de Avalia??o de Sintomas 40, que avalia a severidade de sintomas psicopatol?gicos segundo quatro dimens?es: psicoticismo, obsessividade-compulsividade, somatiza??o e ansiedade; ISSL Invent?rio de Sintomas de Stress para Adultos de Lipp, que avalia a presen?a de sintomas de stress nos ?mbitos psicol?gico e f?sico, al?m da fase do stress em que a pessoa se encontra. Os resultados apontaram que os participantes ficaram distribu?dos em adapta??o eficaz (76%) e adapta??o ineficaz leve (24%). Quanto aos sintomas psicopatol?gicos, o escore m?dio foi de 0,41 (? 0,33) (ponto de corte 1[E1]); 56% n?o apresentaram stress e 44% apresentaram stress, dos quais 34% na Fase de Resist?ncia e com predom?nio de sintomas psicol?gicos do stress (73%). As correla??es por postos de Spearman (?) confirmaram as hip?teses iniciais, indicando associa??es significantes e negativas entre sintomas psicopatol?gicos e efic?cia adaptativa e entre stress e efic?cia adaptativa; associa??o significante positiva entre sintomas psicopatol?gicos e stress. A modelagem de equa??es estruturais (MEE) indicou que sintomas psicopatol?gicos predizem o stress psicol?gico e a efic?cia adaptativa, entretanto o stress f?sico e as fases do stress n?o se configuram como preditores da efic?cia adaptativa.

Thesis (Masters) -- The College of Saint Elizabeth, 2009. / Typescript. Available at The College of Saint Elizabeth - Office of Graduate Programs. "December 2009"

Violence in the work environment is growing; being nursing is one of the professions in health more likely to suffer it. Throughout this research, it was chosen to investigate violence in the work of nursing in hemodialysis service. The objectives of this study consisted in identifying the determinants of violence at work recognized by the nursing staff of hemodialysis service and know the strategies adopted concerning the issue. It is a qualitative research which had as study environment a service of hemodialysis. Inclusion criteria were: being a nurse, technician or auxiliary nurse, to be a current employee and be working at the period of data collection. The focus group technique was chosen to obtain the data, which occurred in June 2010, according to the ethical guidelines for research involving humans. The data were treated according to theme analysis, being organized and discussed through three theme lines: the understanding given to violence in work environment, workplace violence in the space of chronic kidney disease when the patient is the assailant and, finally, the strategies used by nursing staff to face violence at work in the service of hemodialysis. Eight nursing staff participated in the study. It was highlighted that the concept of workplace violence is complex, depending on individual conceptions of each worker. Violence was described as quotidian in the context of chronic illnesses, being the verbal form the main one in these environments. The patient on hemodialysis was highlighted as the main agent of violence in this context, being influenced by chronic disease status of relations with the nursing staff, due to personal characteristics of the patient and, finally, as a matter of everyday life. Participants stated that violence causes pain and illness in the team, adopting the following strategies: tolerance for violence by the health condition of the patient; giving in not to be attacked, take a strong position and get away from the offender patient. It can be said that violence in nursing work is present in hemodialysis services studied and, with this study, awoke to taking actions that seek ways to face this reality. In this sense, it is understood that these results should not be taken as absolute and direct to the paths that can be investigated, recommending the expansion of the discussions about violence at work in other hemodialysis services. / A violência no trabalho vem crescendo, sendo a enfermagem uma das profissões da área da saúde mais propensas a sofrê-la. Neste estudo, optou-se por investigar a violência no trabalho de enfermagem em um serviço de hemodiálise. Os objetivos do estudo consistiram em identificar os fatores determinantes da violência no trabalho reconhecidas pelos trabalhadores de enfermagem de um serviço de hemodiálise e conhecer as estratégias adotadas frente à questão. Trata-se de uma pesquisa qualitativa que teve como ambiente de estudo um serviço de hemodiálise. Os critérios de inclusão foram: ser enfermeiro, técnico ou auxiliar de enfermagem, estar efetivado e trabalhando no serviço no período de coleta dos dados. O grupo focal foi a técnica escolhida para a obtenção dos dados, que ocorreu em junho de 2010, conforme os preceitos éticos para pesquisas com seres humanos. Os dados receberam tratamento conforme a análise temática, sendo organizados e discutidos em torno de três eixos temáticos: o entendimento dado a violência no trabalho; violência no trabalho no espaço da doença renal crônica quando o paciente é o agressor; e, por último, as estratégias utilizadas pelos trabalhadores de enfermagem frente à violência no trabalho no serviço de hemodiálise. Participaram do estudo oito trabalhadores de enfermagem. Evidenciou-se que o conceito de violência no trabalho é complexo, dependendo de concepções individuais de cada trabalhador. A violência foi descrita como cotidiana no contexto de adoecimento crônico, sendo a verbal a principal forma nestes ambientes. O paciente em hemodiálise foi destacado como principal agente de violência neste contexto, sofrendo influência da situação de doença crônica pelas relações com os trabalhadores de enfermagem, por características pessoais do paciente e, por último, por questões do dia a dia. Os participantes afirmaram que a violência causa sofrimento e adoecimento na equipe e adotam como estratégias: tolerância à violência pela condição de saúde do paciente; contornar e ceder para não ser agredido; adotar um posicionamento firme e se afastar do paciente agressor. Pode-se afirmar que a violência no trabalho da enfermagem está presente no serviço de hemodiálise estudado e, com a realização deste estudo, despertou-se para a tomada de ações que busquem formas para o enfrentamento desta realidade. Neste sentido, entende-se que estes resultados não devem ser tomados como absolutos e direcionam-se aos caminhos que podem ser investigados, recomendando-se a ampliação das discussões acerca da violência no trabalho em outros serviços de hemodiálise.

Introdução: A doença renal crônica afeta de 10 a 15 % da população adulta mundial e a piora da função renal, se associa com várias complicações, tais como: desnutrição, inflamação, doenças cardiovasculares e distúrbios do metabolismo mineral. A mortalidade desses pacientes é elevada sendo de 6 a 8 vezes maior que a de indivíduos saudáveis. Cerca de 22% dos pacientes incidentes, ou seja, no primeiro ano de diálise, vão a óbito. O objetivo do presente estudo foi avaliar as características clínicas, laboratoriais de pacientes incidentes em diálise além de identificar fatores de risco que contribuíssem para a mortalidade desses pacientes. Métodos: Estudamos 424 pacientes com sinais e sintomas de uremia e indicação de tratamento dialítico admitidos no serviço de emergência do Hospital das Clínicas entre Janeiro de 2006 e Dezembro de 2012. O tempo de acompanhamento foi de um ano. Analisamos os parâmetros clínicos, tipo de via de acesso para hemodiálise, fatores de risco ligados a doenças cardiovasculares e as alterações do metabolismo mineral bem como eventos clínicos ocorridos durante o seguimento. Avaliamos a sobrevida e os fatores que influenciaram a sobrevida dos pacientes, pela curva de Kaplan-Meier e análise de regressão de Cox, respectivamente. Resultados: A média de idade foi de 50±18 anos, 58,7% eram homens e 69,1% brancos. Hipertensão arterial foi a principal etiologia da doença renal primária (31,8%) seguida de DM (29,5%). Os principais fatores de risco encontrados foram tabagismo (19,6%), dislipidemia (48,8%), doenças cardiovasculares (41%) e na admissão a maioria dos pacientes não tinha acesso vascular para hemodiálise (89,4%). Os resultados dos exames laboratoriais revelaram que a maioria dos pacientes estava anêmico (83,7%), com níveis de PCR elevados (79,9%). Os distúrbios do metabolismo mineral como hipocalcemia, hiperfosfatemia, elevação dos níveis de paratormônio e diminuição dos níveis de 25(OH) vitamina D estavam presentes em praticamente todos os pacientes. Ao término de um ano, 60 pacientes faleceram (14,1%). Esses pacientes eram significativamente mais idosos, apresentavam sinais de insuficiência cardíaca congestiva, de desnutrição, de inflamação, níveis reduzidos de 25 (OH) vitamina D, desenvolveram maior número de infecções e não tinham acesso vascular definitivo para hemodiálise. Conclusões: A avaliação conjunta de parâmetros clínicos, laboratoriais e dos fatores de risco revelou que a idade mais avançada, presença de insuficiência cardíaca congestiva, desnutrição, inflamação, deficiência de vitamina D e a falta de via de acesso para hemodiálise foram fatores preditores de mortalidade em pacientes incidentes em hemodiálise / Introduction: Chronic kidney disease affects 10-15% of the world adult population, and the worsening of renal function is associated with several complications, such as malnutrition, inflammation, cardiovascular diseases and disorders of mineral metabolism. Mortality of those patients is high and 6 to 8 times higher than that of healthy individuals. About 22% of incident patients, that is, during the first year of dialysis, will die. The aim of this study was to evaluate the clinical and laboratory characteristics of incident dialysis patients and identify risk factors that contribute to the mortality of these patients. Methods: We studied 424 patients with signs and symptoms of uremia and dialysis indication admitted to the emergency service at Hospital das Clínicas between January 2006 and December 2012. Follow-up time was one year. We analyzed the clinical parameters, type of hemodialysis access road, risk factors linked to cardiovascular diseases and changes in mineral metabolism as well as clinical events occurred during follow-up. We evaluated survival and the factors that influenced patient survival by Kaplan-Meier curves and Cox regression analysis respectively. Results: Mean age was 50 ± 18 years old; 58.7% were males and 69.1% were white. Hypertension was the main cause of primary kidney disease (31.8%) followed by DM (29.5%). Major risk factors found were smoking (19.6%), dyslipidemia (48.8%), cardiovascular disease (41%), and upon admission most patients had no vascular access for hemodialysis (89.4%). Results of laboratory tests showed that most patients were anemic (83.7%), with high CRP levels (79.9%). Disturbances of mineral metabolism such as hypocalcemia, hyperphosphatemia, elevated parathyroid hormone levels and decreased levels of 25(OH) vitamin D were present in almost all patients. At the end of a year, 60 patients died (14.1%). These patients were significantly older, had signs of congestive heart failure, malnutrition, inflammation, low levels of 25(OH) vitamin D, developed greater number of infections and had no definitive vascular access for hemodialysis. Conclusions: The joint evaluation of clinical and laboratory parameters and risk factors revealed that older age, presence of congestive heart failure, malnutrition, inflammation, vitamin D deficiency and lack of hemodialysis access road were predictors of mortality in incident patients undergoing hemodialysis

Introdução: A doença renal crônica afeta de 10 a 15 % da população adulta mundial e a piora da função renal, se associa com várias complicações, tais como: desnutrição, inflamação, doenças cardiovasculares e distúrbios do metabolismo mineral. A mortalidade desses pacientes é elevada sendo de 6 a 8 vezes maior que a de indivíduos saudáveis. Cerca de 22% dos pacientes incidentes, ou seja, no primeiro ano de diálise, vão a óbito. O objetivo do presente estudo foi avaliar as características clínicas, laboratoriais de pacientes incidentes em diálise além de identificar fatores de risco que contribuíssem para a mortalidade desses pacientes. Métodos: Estudamos 424 pacientes com sinais e sintomas de uremia e indicação de tratamento dialítico admitidos no serviço de emergência do Hospital das Clínicas entre Janeiro de 2006 e Dezembro de 2012. O tempo de acompanhamento foi de um ano. Analisamos os parâmetros clínicos, tipo de via de acesso para hemodiálise, fatores de risco ligados a doenças cardiovasculares e as alterações do metabolismo mineral bem como eventos clínicos ocorridos durante o seguimento. Avaliamos a sobrevida e os fatores que influenciaram a sobrevida dos pacientes, pela curva de Kaplan-Meier e análise de regressão de Cox, respectivamente. Resultados: A média de idade foi de 50±18 anos, 58,7% eram homens e 69,1% brancos. Hipertensão arterial foi a principal etiologia da doença renal primária (31,8%) seguida de DM (29,5%). Os principais fatores de risco encontrados foram tabagismo (19,6%), dislipidemia (48,8%), doenças cardiovasculares (41%) e na admissão a maioria dos pacientes não tinha acesso vascular para hemodiálise (89,4%). Os resultados dos exames laboratoriais revelaram que a maioria dos pacientes estava anêmico (83,7%), com níveis de PCR elevados (79,9%). Os distúrbios do metabolismo mineral como hipocalcemia, hiperfosfatemia, elevação dos níveis de paratormônio e diminuição dos níveis de 25(OH) vitamina D estavam presentes em praticamente todos os pacientes. Ao término de um ano, 60 pacientes faleceram (14,1%). Esses pacientes eram significativamente mais idosos, apresentavam sinais de insuficiência cardíaca congestiva, de desnutrição, de inflamação, níveis reduzidos de 25 (OH) vitamina D, desenvolveram maior número de infecções e não tinham acesso vascular definitivo para hemodiálise. Conclusões: A avaliação conjunta de parâmetros clínicos, laboratoriais e dos fatores de risco revelou que a idade mais avançada, presença de insuficiência cardíaca congestiva, desnutrição, inflamação, deficiência de vitamina D e a falta de via de acesso para hemodiálise foram fatores preditores de mortalidade em pacientes incidentes em hemodiálise / Introduction: Chronic kidney disease affects 10-15% of the world adult population, and the worsening of renal function is associated with several complications, such as malnutrition, inflammation, cardiovascular diseases and disorders of mineral metabolism. Mortality of those patients is high and 6 to 8 times higher than that of healthy individuals. About 22% of incident patients, that is, during the first year of dialysis, will die. The aim of this study was to evaluate the clinical and laboratory characteristics of incident dialysis patients and identify risk factors that contribute to the mortality of these patients. Methods: We studied 424 patients with signs and symptoms of uremia and dialysis indication admitted to the emergency service at Hospital das Clínicas between January 2006 and December 2012. Follow-up time was one year. We analyzed the clinical parameters, type of hemodialysis access road, risk factors linked to cardiovascular diseases and changes in mineral metabolism as well as clinical events occurred during follow-up. We evaluated survival and the factors that influenced patient survival by Kaplan-Meier curves and Cox regression analysis respectively. Results: Mean age was 50 ± 18 years old; 58.7% were males and 69.1% were white. Hypertension was the main cause of primary kidney disease (31.8%) followed by DM (29.5%). Major risk factors found were smoking (19.6%), dyslipidemia (48.8%), cardiovascular disease (41%), and upon admission most patients had no vascular access for hemodialysis (89.4%). Results of laboratory tests showed that most patients were anemic (83.7%), with high CRP levels (79.9%). Disturbances of mineral metabolism such as hypocalcemia, hyperphosphatemia, elevated parathyroid hormone levels and decreased levels of 25(OH) vitamin D were present in almost all patients. At the end of a year, 60 patients died (14.1%). These patients were significantly older, had signs of congestive heart failure, malnutrition, inflammation, low levels of 25(OH) vitamin D, developed greater number of infections and had no definitive vascular access for hemodialysis. Conclusions: The joint evaluation of clinical and laboratory parameters and risk factors revealed that older age, presence of congestive heart failure, malnutrition, inflammation, vitamin D deficiency and lack of hemodialysis access road were predictors of mortality in incident patients undergoing hemodialysis