Objective: Systemic Lupus Erythematosus (SLE) is a multi‐system disease that predominately affects women. Considering the lack of data on health related quality of life (HRQoL) especially in sub‐ Saharan Africa, we undertook a literature review on HRQoL of SLE patients in developing countries to collate the existing evidence and identify information gaps. A mixed methods qualitative and quantitative study of lived experiences of South African women with SLE was performed. Methods: A literature search was conducted on medical databases using MeSH terms pertaining to HRQoL amongst SLE patients in the developing or low income countries to identify articles published between January 1975 and February 2018. The main study included 25 consenting SLE patients attending two tertiary hospitals in Johannesburg and Cape Town. Individual in‐depth interviews, using a topic guide, were conducted and analysed using NVivo software. In addition, participants completed the Short Form‐36 (SF‐36), Functional Assessment Instrument (FAI) and functional assessment of chronic illness therapy (FACIT) for fatigue questionnaires. The questionnaires were analysed per each tool's scoring method and SPSS software was used to calculate mean, standard deviations and correlations. Results The review of 31 articles, from 11 countries indicated that SLE women have a poor general HRQoL. In addition, we found relationships between disease factors including disease activity, organ damage, functioning, and mental health. Poor socioeconomic status worsened SLE outcomes by limiting patients' access to health care and psychosocial services. In the main study, the majority (72.0%) were black Africans, unemployed (76.0%), with low formal educational level and singlehood status (72.0%). The mean (SD) mental and physical composite SF‐36 scores were poor (50.9 (22.1) and 49.1 (20.5) respectively), and 68.0% of women had FACIT scores of severe fatigue. The mean (SD) FAI was 1.33 (0.8), showing that activities of daily living (ADL) were performed with difficulty. Major themes expressed were fatigue, pain, impaired functioning, depression, pregnancy, aesthetic concerns and sexuality issues. Disease chronicity, fatigue and pain were described by many participants as ‘taking over life' and impacting on performing ADL and career opportunities contributing to indigence. Negative pregnancy outcomes were frequently exacerbated by poor sexual relationships and miscommunication between patient and health care workers. Lack of understanding of SLE by patients, community and family as well as suicidal ideations and depressive symptoms were expressed. Although the quantitative tools measured these aspects, they were unable to explore complexities such as limitations in job acquisition, suicidal ideations, disease understanding and support systems. Conclusion This study underscores the complex, chronic and challenging life experiences, often exacerbated by poverty, of SA women with SLE. Quantitative tools may be inadequate in capturing important aspects of HRQoL that emerged from the qualitive interviews. Awareness of these limitations, together with psycho‐social support and education, might improve HRQoL. This thesis recommends multi‐centred, interventional longitudinal studies that incorporate mixed methods and focus on strategies to improve the negative outcomes in SLE.

Includes bibliographical references / Background: Systemic lupus erythematosus (SLE) is a multisystem autoimmune disease commonly affecting females of child-bearing age, hence hormonal changes in pregnancy are thought to play a role in disease activity - often necessitating changes in immunosuppression therapy. SLE is common in Cape Town, however, the effect of pregnancy on SLE and vice versa has not been well characterised. The aim of this study is to report on the pregnancy outcomes of patients with SLE presenting to the maternity department of Groote Schuur Hospital, Cape Town. Methods: This study was designed as a retrospective review of records of pregnant women known with SLE and followed up at the maternity section of Groote Schuur Hospital. The duration of the survey was from 1 January 2003 to 31 December 2013. Records were identified using the attendance registers in the relevant departments. Results: There were 61 pregnancies reviewed in 49 patients; 80.3% of the pregnancies were in patients of mixed ancestry and the rest (19.7%) in black African patients. The mean age at presentation of the current pregnancy was 27215.0 years. Mean gestational age at presentation and delivery was 13.0 ± 6.0 weeks and 28.9 ± 9.8 weeks respectively and 47.5% of the pregnancies were in patients with lupus nephritis (LN). Thirty-nine (63.9%) pregnancies reached the third trimester and 11.5% of all pregnancies ended in the first trimester. There was a lower number of live births to mothers of African ancestry than to those of mixed ancestry (p=0.001). In 55.7% of the pregnancies, no flare was reported while a renal flare was reported in 23%. Pregnancies in patients with LN had higher frequencies of flares (58.6% vs 31.3%; p=D.O32), pre-eclampsia (34.5% vs 12.5%; p=D.O41), longer stay in hospital (12.0 ± 9.1 days vs 6.1 ± 5.1 days; p=0.DO-4) and low birth weight babies (1.94 ± 1.02 kg vs 2.55 ± 0.95 kg; p=D.O46) than in patients without LN. Only 36 (59%) of the neonates were discharged home alive and of these 2 (5.6%) were to mothers of black African ancestry (p=0.001). Conclusion: Increased lupus activity in pregnant SLE patients may account for the increased deaths of neonates born to SLE mothers. Patients of black African descent and those with LN tend to have a poorer outcome. A multi-disciplinary approach to the management of SLE patients (of child-bearing age or pregnant) needs to be further evaluated.

No description available.

Tang, Xiaolin. / Thesis (Ph.D.)--Chinese University of Hong Kong, 2013. / Includes bibliographical references (leaves 132-144). / Electronic reproduction. Hong Kong : Chinese University of Hong Kong, [2012] System requirements: Adobe Acrobat Reader. Available via World Wide Web. / Abstract also in Chinese.

This thesis is about the growth and sustainability of a systemic consultancy that for more than ten years has experienced continuous growth and development. It sets out to describe the kind of distinctive dialogical relational practices (Shotter, 2006, 2008) that enables the conditions for a continuous creation of novel and innovative practices which has been expressed into an ever growing and mutating practice both within the community but also in relation to clients. It is argued that it is the distinctive systemic way of being irreverent towards one's own practice; that is privileging curiosity over certainty (Cecchin, 1987), imagination over inference (Rorty, 1989, 1991a), that is perhaps the most specific difference between systemic theory-practitioners and other ways of consulting. Through cases these ideas are described from within the experiences of those participating offering unique expressions of how this difference is lived in a day-to-day conduct. The treatment of these episodes leads to the hypothesis that innovative practices become a 'way of being' in the world rather than a special feature applied on practice which means that it is not only something we do it is also how we see ourselves grow and develop as individuals as well as a community. How this is expressed into client relationships is explored through two cases of innovative consultancy. The thesis is also a self-reflexive portrait described through neo-pragmatic ideas as found in Rorty's (1980, 1989, 1991a, 1991b, 1999) writing. This project is providing a tension within the project of developing the thesis re-viewing my previous systemic vocabulary through the use of new words and metaphors, through which the reader is invited into an extension of the idea of 'irreverence' with Rorty's writing on irony and redescription. During the course of this project a portrait of the kind of leadership practice that facilitates a relationally dialogical way of being in an organisation is described, which serves as a kind of self portrait. The research methods applied is best captured by the notion of participant research (Lindlof, 1995. Wadel, 1991), which entails using a series of data such as interviews, on the spot observations, written material, post episode reflections and participant dialogues in relation to the different meanings an episode can have. All the data used is discussed and related to the theoretical project within the thesis.

published_or_final_version / Medicine / Master / Doctor of Medicine

Thesis (Ph. D.)--Ohio State University, 2004. / Title from first page of PDF file. Document formatted into pages; contains xviii, 212 p.; also includes graphics (some col.) Includes bibliographical references (p. 185-212). Available online via OhioLINK's ETD Center

Thesis (Ph. D.)--University of Hong Kong, 1998. / Includes bibliographical references (leaves 137-161).

No description available.

published_or_final_version / Pathology / Doctoral / Doctor of Philosophy