Thesis (D.P.H.)--University of Alabama at Birmingham, 2008. / Title from first page of PDF file (viewed Sept. 16, 2008). Includes bibliographical references (p. 89-99).

Made available in DSpace on 2016-07-27T14:20:53Z (GMT). No. of bitstreams: 1 Mariana Costa Brasil.pdf: 1110930 bytes, checksum: e7725a875e7e23db24cc62784943d3dc (MD5) Previous issue date: 2016-02-05 / This dissertation aims to understand how the process of resilience happens in family caregivers of leukemia patients, whether it s acute or chronic, lymphatic or myeloid. It s presented in two articles: the first article is a systematic review of literature and the second one is empirical research. The aim of this revision was to present a global view of the national and international study about resilience in family caregivers of chronic diseases, from articles published and filed between 2005 and 2015. It was reached 34 studies to make this article. It concludes that researches about family caregivers has grown around the world, with the increase of anual publications. However, the fact that the concept is not unanimous to the researchers makes it dificult to have just one way of thinking about the theme. It was also perceived that latin publishment, specially in Brazil is still very much underdeveloped. When talking about empirical research, it s wise to recall that it s related to a quality study about series cases, with variations of quantities, descriptive and exploratory. It took part in the research 14 family caregivers followed by their leukemia patients, ten women and four men, with ages between 20 and 69 years old. Futhermore, as considered resilience as a process, it was possible to realize the way each family caregivers live the experience. Although, some factors were detected as regular to them when talking about promoters or inhibitors inside the process, the most relevant were the social support and life quality. It was detailed as the major difficulties faced by the families caregivers when they assumed the function. Therefore, to study the phenomenon which shows the human s potential, as in the resilience, has been more necessary. This happens because to understand how people can face extremely stressful situations, get over them and grow up in front them, makes the health professionals pay close attention to these phenomenon, making it possible to create programs and favorables projects in this field of overcoming and human development. / Esta dissertação buscou compreender como se dá o processo de resiliência de cuidadores familiares de pacientes com leucemia, seja ela aguda ou crônica, linfoide ou mieloide. Ela está organizada em dois artigos, sendo o primeiro uma revisão sistemática da literatura e o segundo uma pesquisa empírica. O objetivo da revisão foi apresentar um panorama da produção nacional e internacional acerca do estudo sobre resiliência em cuidadores familiares de doenças crônicas, a partir de artigos publicados e indexados entre os anos de 2005 e 2015. Chegou-se a 34 estudos para a construção deste artigo. Concluiuse que as pesquisas sobre resiliência em cuidadores familiares têm se expandido no mundo, com crescimento nas publicações anualmente. No entanto, o fato do conceito não ser unânime aos pesquisadores, torna difícil levantar uma única linha de pesquisa sobre o tema. Notou-se também que a publicação latina, sobretudo no Brasil ainda é muito incipiente. Em relação à pesquisa empírica vale ressaltar que trata-se de um estudo qualitativo série-de-casos, com variáveis quantitativas, descritivo e exploratório. Participaram 14 cuidadores familiares acompanhantes de pacientes portadores de leucemia, sendo dez mulheres e quatro homens, com idades entre 20 e 69 anos. Ao se considerar a resiliência como processo, foi possível perceber que ela é vivenciada de forma singular por cada cuidador familiar participante. Porém, alguns fatores foram levantados como comuns a eles quando se tratou de promotores ou inibidores deste processo, sendo os mais aparentes a rede de suporte social e a qualidade de vida. Foram descritas as principais dificuldades pelas quais os cuidadores familiares passam ao assumirem este papel. Assim estudar fenômenos que mostrem a potencialidade humana, como é o caso da resiliência tem sido cada vez mais necessário. Isto porque, ao compreender como as pessoas conseguem enfrentar, superar e crescer diante de situações extremamente estressoras, faz com que os profissionais de saúde possam se atentar para estes fenômenos, possibilitando a criação de programas e projetos favoráveis a esse universo de superação e de desenvolvimento humano.

Background: Liver cirrhosis is a global health problem and a national health problem in Egypt. There is a lack of literature on Health-Related Quality of Life (HRQOL) and symptoms experience of liver disease and cirrhotic patients in Middle East, particularly in Egypt. Aims: This PhD had three major aims: First aim: To describe HRQOL of Egyptian liver cirrhotic patients and to identify and evaluate the factors associated with (HRQOL) physical and mental health domains. Second aim: To explore and describe experienced symptoms (prevalence, severity and hindrance) in Egyptian cirrhotic patients and to identify and evaluate factors associated with symptoms severity and symptoms hindrance (distress). Third aim: To explore and describe how cirrhotic patients in Egypt perceive social support from spouse, family and friends and to identify and evaluate factors associated with general perceived social support. Method: A cross-sectional study with a convenience sample of 401 patients from three hospitals in Cairo, Egypt, was conducted between June and August 2011. Patients were interviewed to complete a background data sheet, Short Form-36v2 (SF-36), the Liver Disease Symptom Index (LDSI)-2.0 and the Multidimensional Scale of Perceived Social Support (MSPSS). Results: Findings for first aim: The findings showed that all domains and component summary scores [Physical component summary score (PCS) and mental component summary score (MCS)] of the generic SF-36 were below the norm (cut-off score 50), suggesting that patients with liver cirrhosis in Egypt have poor HRQOL. About 87.2% of the patients rated their general health as poor or fair, which means the majority of these patients have low perceived general health. Many socio-demographic and medial factors were shown to be significantly associated with perceived HRQOL. Women, illiterate and unemployed people, and patients with frequent hospitalisation had poor PCS and MCS, while patients with advanced disease stage, increasing number of comorbidities and complications and those admitted to inpatients had significantly poorer PCS only. Perceived social support from a spouse had a statistically significant positive association with PCS and MCS, while perceived social support from family and friends had a statistically significant positive association with MCS only. Also, severity and hindrance of symptoms significantly correlated with PCS and MCS. Using stepwise multiple linear regression analysis, two models were developed to identify factors associated with PCS (Model 1) and MCS (Model 2) health. Model 1 could significantly explain 19% of the variation in PCS (R2 = 0.190, R2adj = 0.180, p = 0.0005), and four factors (symptoms severity, disease stage, comorbidities and employment status) were significantly (p ≤ 0.02) associated with PCS. Model 2 could significantly explain 31.7% of the variation in MCS (R2 = 0.317, R2adj = 0.308, p = 0.0005), and four factors (symptoms severity, employment status, perceived spouse support and perceived family support) were associated (p ≤ 0.04) with MCS. The key findings of this study were that severity of symptoms and social support from spouse and family were associated with HRQOL. Where patients with high symptoms severity were likely to report poor PCS and MCS; and patients with low perceived social support were likely to report poor MCS. Symptoms severity contributed significantly in explaining 28.7% of the variation in PCS and 43.6% of the variation in MCS. Findings for second aim: This study found that the majority of patients had one or more of a wide range of symptoms and social problems. Two-thirds of patients reported joint pain (78.3%), decreased appetite (75.6%) and memory problems (77.3%). Joint pain and depression were reported to have the biggest impact on daily life. Symptoms severity and distress were significantly higher among patients who were: female, illiterate, unemployed, and who had advanced cirrhosis with more complications and comorbidities (p ≤ 0.006). Symptoms severity (r=-0.206) and symptoms distress (r=-0.205) were negatively associated with perceived social support (p=0.005). Stepwise regression analysis showed that the regression model could significantly explain 19.6% of the variation in symptoms severity (R2 = 0.196, R2adj = 0.180, p = 0.0005), and 14% of the variation in hindrance of symptoms (R2 = 0.140, R2adj = 0.132, p = 0.0005). Being female, having an increasing number of liver disease complications, and having low perceived support from spouse were significantly associated with high-perceived symptoms severity and hindrance (p≤0.01). Findings for third aim: This study found that social support score was relatively high among patients with cirrhosis in Egypt (total score mean of MSPSS was 2.02± standard deviation (0.537), while perceived support from spouse was the highest source of support. 67.5% of the patients felt their spouse is around when they need him/her and 71.7% of them share their joys and sorrows with their spouse. Likewise, 64.9% of married people feel their spouse cares about their feelings. In relation to the perception of adequacy of family support, it was observed that 52.6% felt that their families do not really try to help them. At the same time, 52.1% reported that they got the emotional help and support that they needed from their families. Regarding perceived support from friends, more than half of the patients reported that their friends do not really try to help them (57.9%), they cannot count on their friends when things go wrong (65.6%) and they cannot talk about their problems with their friends (56.4%). There was a significantly positive association between the perception of social support and general health perception (GHP), suggesting that when social support decreases GHP also decreases or and vice versa (r= 0.208, p = 0.0005). Stepwise regression analysis showed that the regression model could significantly explain 10.9% of the variation in perceived social support (R2 = 0.109, R2adj = 0.100, p = 0.0005). Marital status, gender, age and employment status were significantly associated with general perceived social support (p ≤ 0.01), while unmarried, females, unemployed and elderly cirrhotic patients were vulnerable groups that were likely to perceive low social support. Overall discussion and conclusion: This is the first study to investigate HRQOL, symptoms experience and perceived social support in patients with liver cirrhosis in Egypt. All aspects of HRQOL of Egyptian cirrhotic patients were poor, and they were experiencing various symptoms that can affect their daily life. However, social support was found to be related to perceived symptoms severity and perceived poor mental health. Hence, social support may alleviate suffering for certain cirrhotic patients. Nurses have a responsibility to assess and treat symptoms that cirrhotic patients experience, particularly such treatable symptoms as depression, pain and decreased appetite. Also, nurses should involve the patient’s family in any plan of care. Future intervention studies that aim to develop programs to relieve treatable symptoms and enhance social support are also recommended.