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“Training for Language Comfort”: Enhancing the Informed Consent Process at TB/HIV Clinical Research Sites

HCRU project

The HCRU is formally part of the South African Medical Research Council (SAMRC) funded Advancing Care & Treatment for TB/HIV (ACT4TB/HIV) consortium, in collaboration with the Aurum Institute. Several molecular, clinical and social researchers, multiple sites and projects are involved in this consortium, with the HCRU’s focusing on enhancing the informed consent process (ICP) at TB/HIV clinical research sites using qualitative methodologies.

During the consent process of a clinical trial, participants are provided with a large amount of information. Understanding this information may be difficult in a context of cultural and linguistic diversity, poverty and limited scientific literacy. Achieving successful trial retention and adherence may depend in part on how information is conveyed to, and understood by participants. For this collaboration, the HCRU focused on enrollers and recruiters' accounts of the ICP, since little literature exists on their experiences’ even though they are an integral part of the process. While patient and community members’ experiences of informed consent (IC) is useful, to improve interactions between patients/participants and healthcare professionals (HCPs), and enhance participant understanding of information, a greater focus on the experience and skills of the HCPs involved, is thought important.

The HCRU has worked closely with the recruiters and enrollers at a clinical research site in Rustenburg, North West Province. During this time, we aimed to assess what the communicative barriers and facilitators during consent and enrollment in two clinical trials are. Data was gathered in the form of reflective diaries, focus group discussions and ethnographic field notes. Challenges highlighted include: terminology, jargon, the length and format of the consent documents, procedure related challenges such as blood withdrawal, as well as contextual challenges. Based on the findings, the HCRU held communication training workshops with the recruiters and enrollers in order to jointly develop a more flexible, user- friendly and contextually appropriate ICP. When comparing the existing standardised ICP versus the new modified ICP in two TB/HIV clinical studies at the site, findings revealed that a contextually tailored approach can improve participant comprehension, decrease length taken to explain concepts, as well as increase overall level of language comfort during the interaction. Recruiters and enrollers provided positive feedback on the experience, and particularly valued the opportunity to have been part of the development of the new ICP.

The study emphasises the valuable role that recruiters and enrollers play in TB/HIV clinical research and their invaluable insight into contextual factors. The inclusion of community advisory boards and local experts in the development of clinical research protocols and consent documents has the potential to increase the yield of trial enrolment, enhance trust amongst researchers and communities, as well as ensure positive communication outcomes.

Some of the findings from this project were presented at the International Critical Health Psychology Conference (ISCHP) in Loughborough, United Kingdom (UK) in July 2017.

The Blood Sugars Project: Drama and Diabetes

blood sugar project

This recently completed UK Wellcome Trust International Engagement Grant funded project aimed to understand how communities, healthcare professionals and patients can work more effectively to combat diabetes in an urban South African Context. This project was a collaboration between the HCRU, Drama for Life (DfL) and Chris Hani Baragwanath Academic Hospital’s (CHBH) Diabetes/Endocrine Clinic in Soweto, Johannesburg.

During the project, data was collected in the form of ethnographic observation, interviews and focus groups held at the Diabetes/Endocrine Clinic (HCRU). In addition, research team members also attended the CHBH Endocrine Clinic Type 1 Diabetes camps for adolescents, in order to better understand the contextual and daily challenges faced for those living with diabetes from various age-groups.

Based on the research findings, several drama workshops were created and held at the clinic. The workshops, facilitated by drama therapists (DfL), have aimed to create a healthier dialogue and improved communication between patients and healthcare professionals, as well as provide key opportunities for reflection, engagement and discussion around the contextual- and daily-challenges of living with, and treating Type I and II diabetes.

The research project has also been produced into a travelling play which has been showcased to various community, clinical and academic audiences and age-groups across Johannesburg where it has received positive review. A film of the research process, directed by Jessica Denyschen, and featuring the photography of Yeshiel Panchia, has also been developed.

Furthermore, we were pleased to showcase the project and play at the Symposium Launch for the Second Lancet Series on Adolescent Health in September 2016, as well as the Royal Society for Public Health webinar focused on arts in health in Africa in April 2017. The project was also chosen as a keynote performance at the Culture, Health & Wellbeing International Conference in Bristol, United Kingdom, in June 2017.

Emergency Call Project: Understanding and Improving Communication in Emergency Medical Calls in South Africa 

HCRU project

This project is funded by the National Research Foundation and is a collaboration between the HCRU and the Western Cape Government Emergency Medical Services (EMS) in Cape Town. We have also partnered with the Department of Emergency Medicine at the University of Cape Town.

Establishing location is a critical feature of emergency calls. The caller and call-taker, through an interrogative series of questions and answers, must swiftly establish a contact number, the geographic location or place reference, as well as sufficient details about the medical emergency in order to send out an appropriate medical team. The ramifications of inaccurate, obscure, or misunderstood place references can be catastrophic.

Contextual issues are very important to this process. Evidence suggests that call efficiency is influenced by geographic context, by language mismatches in multilingual settings, and by the system used by the call Centre. In addition, interpersonal and emotional factors including the presence of conflict or mental health issues may impinge on the efficiency of the call.

We have transcribed and analysed over 200 EMS calls thus far, using Conversation Analysis principles. Findings from this project reveal that several challenges exist in South African calls that include unique social, linguistic and geographical features. Through micro-level analysis and exemplification of calls, the HCRU has been able to highlight the complexity of the process, the high burden of responsibility placed on the call taker and the consequences of getting it wrong. Our findings reflect the importance of integrating system knowledge with local expertise as a relevant solution for promoting call and system efficiency.

A model of training has been devised and a set of training guidelines developed. The training component of the project took place in early 2017, with additional training expected.

Some of the findings from this project were presented at the International Critical Health Psychology Conference (ISCHP) in Loughborough, United Kingdom (UK) in July 2017.

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