Harriet Etheredge

A pilot study evaluating an intervention designed to raise awareness of clinical trials among potential participants in the developing world.

Background This pilot study evaluated the speaking book ‘What it means to be part of a clinical trial’. The book aims at empowering populations with information on their rights and responsibilities when enrolled in clinical research. Wide publication of the book—at significant cost—is anticipated. It is important that the book is evaluated within the communities for whom it is intended, and the necessary changes (if any) are made, before translation and large-scale publication takes place. Objective The objective of the study was to measure the efficacy and ease of use of the book. Methods Participants were recruited from a catering company. Participants were questioned on their knowledge of clinical trials and were then given the book. Instructions for use of the book were given to one group (‘experimental’ group). The other group (‘control’ group) was not given any instructions. A week later, the investigators returned, repeated the knowledge questions and asked ‘ease of use’ questions. Results A two-way repeated measure of covariants showed a statistically significant positive increase in knowledge of clinical trials among the intervention group (p=0.02). Results for the control group displayed trends that were not statistically significant. Percentage analysis of ‘ease of use’ questions proved that the book is easy to use, although some changes would be beneficial. Conclusion This study revealed that the speaking book is easy to use. It significantly increased knowledge of clinical trials among the study sample if instructions on use of the book were provided.

Attitudes to organ donation among some urban South African populations remain unchanged: A cross-sectional study (1993 - 2013)

BACKGROUND A 1993 paper in the SAMJ suggested that public attitudes to organ donation in South Africa were positive. However, statistics reveal a decline in the annual number of transplants in this country. OBJECTIVE To repeat the 1993 survey as far as possible and determine whether public attitudes to organ donation in some South African populations have changed over the past 20 years. METHODS The 1993 study was replicated in 2012 to generate a current data set. This was compared with the raw data from the 1993 study, and an analysis of percentages was used to determine variations. RESULTS Generally attitudes to organ donation have not changed since 1993, remaining positive among the study population. However, individuals are significantly more hesitant to consider donating the organs of a relative without being aware of that persons donation preference. Individuals in the black African study population are currently more willing to donate kidneys than in 1993 (66% v. 81%; p < 0.0001), but less willing to donate a heart (64% v. 38%; p < 0.0001), a liver (40% v. 34%; p < 0.036) and corneas (22% v. 15%, p < 0.0059). CONCLUSIONS Publicity campaigns aimed at raising awareness of organ donation should emphasise the importance of sharing donation preferences with ones family in order to mitigate discomfort about making a decision on behalf of another. These campaigns should be culturally and linguistically sensitive. The study should be repeated in all populations over time to continually gauge attitudes.

Public attitudes to organ donation among a sample of urban-dwelling South African adults: a 2012 study.

Published literature suggests that attitudes toward organ donation in South Africa are generally positive. However, there has been a decline in the actual number of transplants taking place annually, which is not consistent with expressed positive attitudes.

A Qualitative Analysis of South African Health Professionals’ Discussion on Distrust and Unwillingness to Refer Organ Donors:

Introduction: South Africa is faced with very low deceased organ donor numbers. Often, sociocultural practices, which are thought to be fundamentally opposed to deceased organ donation, are hailed as the cause. However, other factors such as context, social perceptions, and clinical environment may play a role. Aim: The aim of this article is to present research that explored communication in organ transplant and identified barriers to organ donation decisions in a province of South Africa. Methods: Qualitative methods were used. Thirty semistructured interviews with transplant professionals and 2 focus groups with transplant coordinators took place across 6 health institutions in Gauteng Province. Results: Barriers that may prevent transplant professionals from referring potential donors were identified: The wider public and transplant professionals may be suspicious of biomedicine and have a perception that people could be killed for their organs. Organ donation was sometimes framed as “murder,” “killing,” or a “bunch of vultures.” Doctors may be unwilling to refer brain-dead patients, as this was seen as failing in one’s professional duty to cure the patient. The role of sociocultural practices was inconclusive, with the sample divided based on the extent of their influence. Conclusion: Low donor numbers may be a manifestation of barriers to referral in the clinical setting. These barriers interplay in a context of suspicion and are framed by a clinical transplant discourse that is sometimes loaded with negative connotation. Sociocultural practices are influential, but they may not be the overriding cause of low donor numbers.

Nurses’ knowledge about and attitudes toward organ donation in state and private hospitals in Johannesburg, South Africa

Background . Nurses are intricately involved in organ donation; however, the referral of donors appears to be declining in Johannesburg, South Africa (SA). This may be due to barriers in the referral process. Objectives . The objectives of this study were to explore nurses’ knowledge of the organ donation process and to explore personal beliefs and attitudes around organ donation. Methods . A quantitative, self-administered questionnaire was completed by nurses in Johannesburg, SA. Results. A total of 273 nurses participated, of whom most were female and <50 years old. The majority of participants (64.2%) reported positive attitudes, and 63.2% stated that their personal beliefs about organ donation did not influence the advice they gave to patients. However, only 36.8% felt confident referring potential donors and 35.8% felt that referral was within their scope of practice. Most participants (84.5%) felt that it was the doctor’s responsibility to refer donors, but 80.3% noted that they would refer donors themselves if there was a mandatory referral protocol. Only 61% of nurses were aware that there was access to a transplant procurement coordinator through their hospitals; however, there was uncertainty regarding the role of the coordinator. Conclusion . There is an urgent need to clarify the role of nurses in the process of organ donor referral in SA. Although nurses felt positive about organ donation, they expressed uncertainties about referring potential donors. However, if a clear protocol for referral was introduced, the majority of nurses noted that they would willingly follow it. We advocate for the development and implementation of a nationally endorsed protocol for donor referral and for the training of nurses in organ donation in SA.

“Humanising Healthcare Spaces”: Report on the Development and Impact of a Music Collaboration Between Community Music and Donald Gordon Medical Centre at the University of the Witwatersrand, Johannesburg, South Africa

ABSTRACT This article reports on the evaluation of a new partnership between the University of the Witwatersrand’s Wits Donald Gordon Medical Centre (WDGMC) and the Music Division at the Wits School of Arts (WSOA) in Johannesburg, South Africa. Established in 2015, the partnership aims to bring live music to the wards of WDGMC through a student placement in the hospital, which forms part of the Bachelor of Music students’ fourth year Community Music course. The article examines the effects of live music performances on patients, staff, and hospital spaces more broadly. Data was collected by means of a questionnaire, nurse, and student focus groups, as well as student academic essays. The results revealed a range of benefits and suggest that live music performances may be able to humanise hospital spaces, enabling different modes of musical engagements that confer agency and control to patients, their carers, and nurses. The article concludes by advocating for a mutually-beneficial relationship between the health sciences and the arts, through community music interventions such as this pilot Wits “music in hospital” project.

Challenges in Expanding Access to Dialysis in South Africa—Expensive Modalities, Cost Constraints and Human Rights

South Africa is a country with two distinct health sectors, which are both characterised by inequalities. Within this context, patients with end stage renal disease face unique and sometimes impenetrable barriers to accessing dialysis. There are a number of reasons for this situation. These include: the South African government’s endorsement of discordant, unequal policies, which disadvantage the most vulnerable; a lack of robust national guidelines; and divisive rationing practices, which are ad hoc and place the burden of responsibility for rationing dialysis on the clinician. In this paper, we trace the socio-economic mechanisms of how we have come to be in this situation, and overlay this with a detailed examination of South African legislation. Finally, we make comprehensive practical recommendations for rectifying the situation, which include engagement with key stakeholders, public–private partnerships, and more equitable funding mechanisms.

Enhancing the doctor-patient relationship: Living, dying and use of the living will

This article aims to establish whether processes around the consideration and execution of the living will help enhance the doctor-patient relationship. Studies indicate that the living will is not used frequently, and that the doctor-patient relationship is often deficient. The article explores the two primary topics – the living will, and the doctor-patient relationship – separately, and then presents a synthesis of these separate investigations. This synthesis concludes that the living will can help enhance the doctor-patient relationship. Following this analysis a brief practical model is offered.