Includes abstract. / Includes bibliographical references (leaves 43-47). / People living with HIV/AIDS experience many losses, one of which may be loss of sexual expression. Sexuality has a broader meaning than mere sexual intercourse; it encompasses intimacy and impacts on psychosocial and spiritual realms. Despite the broader meaning of sexuality and that HIV is mainly a sexually transmitted disease; carers generally avoid real issues of sexuality. This study explored issues of sexuality in people living with AIDS who are given an optimistic outlook to life by the availability of HAART.

Includes bibliographical references. / The study aimed to provide an understanding of health-related quality of life and psychological well-being amongst low-income women living with the Human Immunodeficiency Virus (HIV) or Acquired Immune Deficiency Syndrome (AIDS) in South Africa. The research examined the relationships among biomedical and psychosocial factors and health-related quality of life (HRQOL) and the levels of suicidality (psychological distress) of women with HIV and AIDS in the province of KwaZulu-Natal. One hundred and thirty three (133) women over the age of 18 years (average age 32.96 yrs) participated in the study. In order to assess psychological distress, participants completed a Suicidality Measure (SM). Psychosocial factors were accessed through participants’ perceived social support as measured by the Multidimensional Scale of Perceived Social Support (MPSS). Information on social/contextual variables including income, marital status, employment status, number of children and number of family members in the household was obtained. Participants completed the Health Related Quality of Life Survey (HRQOL) – SF-36. The two biomedical measures were CD-4 count and time since diagnosis information. The findings revealed that perceived social support was inversely related to suicidality, and there was a significant correlation between perceived social support and two SF-36 domains: vitality (VT) and mental health (MH). Overall, the findings indicated that the women did not have adequate social support in their lives. Certain social/contextual factors, for example low income; being employed; number of family members in the household and having a greater number of children negatively impacted on aspects of health-related quality of life of the women. CD-4 count was not a significant predictor of health-related quality of life and suicidality (psychological distress). The findings further indicated a compromised level of HRQOL (i.e. physical, social and emotional functioning) in the HIV-infected women in the study. After controlling for biomedical factors, all the psychosocial factors did not explain the majority of the variance in quality of life. This suggests that these may not have been the most suitable variables used to explain health-related quality of life. Similarly, the psychosocial variables did not account for the variance in suicide scale once the effect of the biomedical variables had been taken into account. Although the women seldom thought of suicide, there was a significant negative relationship between time since diagnosis and suicidality. Newly diagnosed patients were less likely to think of suicide as an option than women who had been diagnosed some time before.

Includes abstract. / Includes bibliographical references (leaves 61-67). / The study was conducted at Tshwane District Hospital (TDH) in Pretoria, Gauteng Province, South Africa. TDH is a district hospital that provides comprehensive primary level health care services to patients from a large part of the greater Tshwane Municipality (estimated population of 2,2 million people). The aim of this retrospective cohort study was to identify factors that may predict the outcome of individuals started on HAART and to formulate a guideline to assist health care workers to identify and better support patients more at risk of mortality or poor outcome.

Includes bibliographical references. / The objective of this study is to identify the common medical problems seen in late stage HIV/AIDS patients in rural Mpumalanga, South Africa and the resources used for their care.

Includes bibliographical details. / In Tanzania, palliative care is relatively new, and faces the common challenges of access to services, crucial medications, and education. Since 2004, an initiative within the health system of the Evangelical Lutheran Church in Tanzania (ELCT) began to promote and develop palliative care, using as a model the Selian Hospice and Palliative Care Programme. The hospitals which are the sites for team development and service delivery are widely scattered throughout rural Tanzania. Access to oral morphine was only a dream, as it is for much of the rural population of the world. In 2007, a program called CHAT (Continuum of care for people living with HIV/AIDS in Tanzania), funded by the U.S. government, allowed the up-scaling of these palliative care programs, resulting in 13 strong and mature teams by 2011, though still lacking oral morphine. Part of the monitoring and quality assurance of the program has been use of a tool developed by APCA: the APCA African Palliative Outcome Scale (POS). Hundreds of people living with cancer and HIV were subjected to the questions of the tool, which was always sent on to the core supervising team for assessment and feedback. Tramadol was the strongest analgesic available to the teams throughout the study time. 145 APCA African POS results on cancer patients were assessed, looking at differences in pain scores (0 to 5 scale) over time as well as assessing the other domains of care (psychological, spiritual, social, and family). 11 Palliative care nurses were also interviewed, asked to reflect on specific cases from their experience with both good and bad pain control. 5 of the nurses came from Selian, with access to oral morphine, while 6 of them came from the CHAT hospitals. Significant improvement in pain scores over 4 weeks was noted (3.83 to 2.31, p < 0.0001). All other domains assessed in the POS also improved significantly. Nurse interviews revealed an emphasis on the holistic approach and a strong preference for having access to oral morphine. In this rural Tanzanian environment, effective palliative care services – including pain control - were delivered even in the absence of oral morphine. Such services can become a strong advocacy at the government level for achieving breakthroughs in palliative care, including access to oral morphine.

Background: Patients often present to the Emergency Department (ED) at the end of life. Caring for these patients present a unique set of challenges, and often the patients' and families' needs are at odds with the pervasive rescue-oriented ED culture. A potential solution to this problem is an Acute Palliative Care Unit. Groote Schuur Hospital opened such a unit in April 2011, managed by the ED staff. This kind of service was not available in this tertiary, academic state hospital prior to that. Objectives: This study aimed to evaluate aspects of care at the Groote Schuur Hospital Palliative Care unit by designing a questionnaire based on the Liverpool Care Pathway assessing elements of care, describing the population admitted demographically, recording outcomes and making recommendations based on the findings. Methods: A retrospective folder review was completed on all patients who were admitted to the unit between April 2011 and May 2013. Data was collected onto an Excel spreadsheet, and was analysed using the SmallStata 13 software package. Demographic data collected included sex, age, area from which the referral came, diagnosis, length of stay and outcomes. Data on care were grouped into physical care, psychological care, spiritual care, communication skills and bereavement care. Results: 176 folders were identified. 167 were reviewed (nine were missing). Nine folders did not meet inclusion criteria. 158 folders were included in the study. The vast majority of patients were admitted from home via the ED. Mean age was 59.49 years (95% CI 56.76 – 61.53). Median length of stay was 25 hours (IQR 7-47). 97 patients had palliative care needs in the absence of malignancy, 60 had cancer. 111 (70.7%) patients died in the unit, 5 (3.18%) died en route to the unit, 16 (10.19%) went home, 8 (5. 1%) were referred back to other specialities and 17 (10.83%) were referred to step down facilities. 96% of patients had their medication adjusted, and 128 (81.53%) were commenced on syringe drivers. Morphine, haloperidol and hyoscine butyl bromide were the commonest prescribed medicine in the syringe driver. None of the patients had an official "Do Not Resuscitate" (DNR) form completed, but more than 75% of patients had a note or clear proxy measures indicating that resuscitation is not indicated. Difficulty with communication was present in 8 (5.26%) patients and 10 (6.58%) families. Less than 15% of patients had documented psychological support and less than 30% had documented spiritual care. Bereavement care was also poorly documented. Conclusion: This study described the demographics of, and evaluated the care offered in the Groote Schuur End-of-Life unit. Much of the care is comparable to current recommendations, but there is concern that symptoms may be underestimated in the absence of formal tools. Recommendations include using different terminology w.r.t. the unit, establishing a consulting and outpatient service based at the hospital, implementing formal symptom assessment tools, implementing the formal policy w.r.t. DNR orders, and improved overall documentation. There is scope for further research on interventions such as this one, especially on its impact on staff and its cost-effectiveness. This model of care achieves care comparable to current global recommendations in end-of-life care and can be implemented in similarly resource-restricted contexts.

Includes abstract. / Includes bibliographical references (leaves 138-149). / A survey was done in the City of Cape Town Health District to identify possible barriers and other factors that influence the referral of patients to hospice by oncologists. Factors that influenced referral of patients to hospice included lack of training of oncologists in palliative care, the view of the oncologist's individual role in the care of his patients as well as the ability to communicate comfortably with patients regarding end-of-life care. Reasons for non-referral included hospice not being available in the area or not accessible to patients, the perception of the doctor that he/she is giving up on the patient, previous dissatisfaction with service by hospice and not wanting to lose control of the treatment of the patient.

Bibliography leaves 66-68. / The Tumelong Hospice in Winterveldt, North West Province, South Africa, is a residential care backup for a home based care program. It is unique in that it is run by a staff of lay caregivers trained in basic palliative care with the support of one professional nurse and a visiting doctor. The hospice experienced criticism from some professionals who feel that lay caregivers are not able to run a residential hospice service. Past experience in Winterveldt has shown that lay caregivers can deliver good care with appropriate training and backup support. A literature review revealed that little research has been done in palliative care in Africa. The aim of this study was to determine patients' experience of care in Tumelong Hospice, and whether the standard of care is acceptable to the people who utilise the serivce.

INTRODUCTION: Heart failure is a chronic cardiac condition that would benefit from palliative care and yet palliative care is still mainly provided for people with cancer or HIV. Patients with end-stage heart failure experience similar clinical symptoms as patients with advanced cancer with significant physical and emotional suffering. This research study investigated and assessed the benefits of palliative care in this vulnerable population at a district hospital in Cape Town and emphasized the importance of a hospital-based palliative care facility. METHODOLOGY: A cross-sectional descriptive qualitative study was conducted with in-depth interviews of people living with heart failure using thematic analysis of patient interviews. The study was conducted at a palliative care facility at a government district hospital. Purposive sampling was used for patient selection. A total of 12 participants were interviewed until data saturation. RESULTS: The mean age of the 7 men and 5 women interviewed was 52 years, the youngest participant was aged 27 years old and the eldest was 78. Analysis of these 12 semi- structured interviews produced five main themes. The first theme that emerged focused on issues of high service usage due to recurrent hospitalizations in the group, the second on communication factors in palliative care. The third theme was on information and education, the fourth on the importance of resources in palliative care and the last theme was on the Abundant Life Palliative Care Programme. DISCUSSION: Findings from this study supports the importance of palliative care for people with heart failure. Palliative care early in the disease aims to improve the quality of life for such patients and their families. The data supports the fact that early referral for palliative care resulted in greater symptom control and benefit to the patient long before hospice care is needed. Previous studies have also proven to reduce re-hospitalization rates of this population while reducing costs to the healthcare system.

Includes bibliographical references. / Background: Quality of life is an important concept because it is the essence of health as defined by the WHO. Pain and other distressing symptoms affect children's quality of life. There is very little published information on pain in children with HIV infection, its prevalence or its affect on their quality of life. This study will add to a growing body of literature on health-related quality of life (HRQOL), but more specifically address these issues in a South African context of HlV/AIDS in children. Such data is currently not available. Methods: A cross sectional descriptive study with an analytic component was performed on a convenience sample of 30 caregivers who attended the Paediatric HIV Clinic at Chris Hani Baragwanath Hospital, Johannesburg. All data was collected by a single investigator over a 4 month period. An established, multidimensional health related quality of life assessment tool (The PedsQL(TM) 4.0) designed for children, was used to measure HRQOL. Results: Mean HRQOL scores were evaluated as well as those for physical and psychosocial health. Scores resembled those of children with other chronic diseases. Disease progression affected the scores with lower values for those children with advanced disease. Where no disclosure of HIV status occurred scores were lower for all dimensions. The prevalence of pain in HIV-affected children was 83%. Caregivers reported 55 individual pains in 12 different regions of the body. On average each patient had 2.3 pain sites. Parents often had difficulty describing the nature of the children's pain. Moderate to severe pain was associated with decreased HRQL scores. Discussion: This study is the first to examine pain and HRQOL in HIV-infected children in South Africa. As the nature of HIV changes to a chronic disease with the availability of antiretroviral treatment, HRQOL will become more important as a medical outcome measure. The PedsQL inventory is brief, easy to understand and takes only about 10 minutes to complete. This makes it an ideal tool for a busy clinic setting. Comprehensive, multidisciplinary health services will be required to minimize long-term illness and disability and to maximize children's potential as they move into adolescence and adulthood. The small study number leant itself to a descriptive study of exploratory nature. A follow up study which includes children's self report in their first language would be valuable.