Perceived challenges in the informed consent process: Mismatches between enrollers and researchers at a South African clinical research site.

Enrollers play a critical yet often overlooked role in clinical research, particularly in informed consent processes. Study retention may depend in part on how complex information is conveyed to potential participants. This qualitative study aimed to assess communicative barriers during consent and enrolment in two South African TB/HIV clinical studies. In particular, we compared our own perceptions of potential challenges to consent with that of thirteen enrollers, gained via reflective journaling and focus group discussions. Some overlap of identified challenges was evident, including terminology, jargon and consent document format. However there were mismatches to identified challenges. Enrollers provided further insights into potential challenges to consent, in particular, blood withdrawal, discussion of sexual issues and misunderstanding of study participation. Enrollers also reported feeling ill-equipped to provide counselling when participants became distressed. We offer several recommendations for strengthening the inclusion of enrollers in the development of clinical research protocols and consent documents.

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.

Opt-in or opt-out to increase organ donation in South Africa? Appraising proposed strategies using an empirical ethics analysis.

Utilising empirical ethics analysis, we evaluate the merits of systems proposed to increase deceased organ donation in South Africa (SA). We conclude that SA should maintain its soft opt-in policy, and enhance it with 'required transplant referral' in order to maximise donor numbers within an ethically and legally acceptable framework. In SA, as is the case worldwide, the demand for donor organs far exceeds the supply thereof. Currently utilising a soft opt-in system, SA faces the challenge of how to increase donor numbers in a context which is imbued with inequalities in access to healthcare, multiplicitous personal beliefs and practices, distrust of organ transplant and varying levels of education and health literacy. We argue that a hard opt-in, opt-out or mandated consent system would be problematic, and we present empirical data from Gauteng Province illustrating barriers to ethically sound practice in soft consent systems. Ultimately, we argue that in spite of some limitations, a soft opt-in system is most realistic for SA because its implementation does not require extensive public education campaigns at national level, and it does not threaten to further erode trust at a clinical level. However, to circumvent some of the clinical-level barriers identified in our empirical study, we propose a contextually sensitive option for "enabling" soft opt-in through "required transplant referral". We argue that this system is legally defensible, enhances ethical practice and could also increase donor numbers as it has in many other countries.

'Too much for one day': a case study of disclosure in the paediatric HIV/AIDS clinic.

BACKGROUND: Despite acknowledgement of the complexity and challenges of the process of disclosure of HIV status to adolescents, little work has been carried out on the communication features which facilitate or hinder the process. This qualitative case study reflects the interactional dynamics of an interaction between caregiver, physician and counsellor around the topic of disclosure in a South African clinic. METHODS: A 40-minute encounter between a doctor, the grandmother of an adolescent with HIV/AIDS and a counsellor around the process of disclosure was transcribed and examined in detail in relation to its structure, topics, timing and sequence as well as its movement towards a collaborative ending. Analysis was based on elements of conversational and thematic analysis. RESULTS: The session was characterized by distinct stages and the emergence of multiple voices and perspectives from the participants. The negotiated management of the session sheds light on multiple barriers to care as well as the influence of contextual factors on the process. The important mediating role of the counsellor in the triad emerges. The analysis highlights both unique features of the consultation and common challenges to clinicians when disclosing. DISCUSSION AND CONCLUSIONS: The task of disclosure is complex and intricate. Results suggest team processes are critical, as are temporal and contextual factors and the need for an understanding of communication. Implications for the clinic team are discussed and suggestions made for the development of collaborative partnership based on an understanding of roles and responsibilities, time factors and enhancement of features such as trust and communication.

'And then you can decide'--antenatal foetal diagnosis decision making in South Africa.

BACKGROUND: Decision making is integral to genetic counselling and the premise is that autonomous decisions emerge if patients are provided with information in a non-directive manner. The pivotal activity in antenatal diagnosis counselling with at-risk pregnant women is decision making regarding invasive procedures. This process is not well understood in multicultural settings. OBJECTIVE: This study examined multicultural genetic counselling interactions with women of advanced maternal age (AMA). It aimed to investigate the participants' orientation towards the amniocentesis decision. DESIGN: Data were collected during 14 video-recorded consultations between six genetic counsellors and 14 women of AMA in a genetic counselling clinic in South Africa. The design was qualitative and conversation analysis was used for analysis. RESULTS: Analysis revealed that counsellors used several strategies to facilitate discussions and decision making. However, the invitation to make a decision regarding amniocentesis was not perceived as being neutral. Both the counsellors and the women appeared to treat the offer as one which should be accepted. This resulted in a paradox, as strategies intended to allow neutral discussion seem to achieve the opposite. It is suggested that these results may be linked to the local health-care setting. CONCLUSION: The results suggest that the understanding of decision-making processes and enhancing autonomy may require a more detailed investigation into psychosocial, political and historical factors in the local health-care setting. Models of practice as well as the training of genetic counsellors need to be sensitive to these influences. A closer examination of interactional variables may yield new and relevant insights for the profession.

An International Perspective on Quality of Life in Aphasia: A Survey of Clinician Views and Practices from Sixteen Countries.

OBJECTIVE: To gain an insight into speech and language therapists' perspectives on and practices in quality of life in aphasia. PARTICIPANTS AND METHODS: The International Association of Logopedics and Phoniatrics Aphasia Committee developed a survey questionnaire, which was delivered online, anonymously, through SurveyMonkey (November 2012 to April 2013) to clinicians working with people with aphasia in 16 countries across the world. RESULTS: A large number of speech and language therapists responded to the survey, with 19/21 questions answered by 385-579 participants. Clinicians were well informed on what constitutes quality of life and viewed it as a complex construct influenced by health, participation, in/dependence, communication, personal factors, and environmental factors. In their clinical practice, they considered quality of life as important, used informal approaches to explore it and aimed to address quality of life goals; yet, the majority did not evaluate quality of life in a systematic way. CONCLUSION: There is a need for training on quality of life to help speech and language therapists incorporate quality of life outcome measures in their interventions. There is also a need for further research on which interventions improve quality of life in aphasia.

Beyond physical access: a qualitative analysis into the barriers to policy implementation and service provision experienced by persons with disabilities living in a rural context.

INTRODUCTION: Persons with disabilities make up approximately 15% of the world's population, with vulnerable communities disproportionately affected by the incidence of disability. Research reflects that persons with disabilities are vulnerable to stigma and discrimination, social isolation, and have physical barriers to accessing support services, all of which serve to perpetuate a sense of uncertainty and vulnerability within their lives. Recently a number of policies and models of intervention have been introduced intended to protect the rights of those affected by disability, yet limited research has been conducted into the lived experiences of persons with disabilities, particularly in rural contexts. This implies that little is known about the impact of the rural context on the lived experience of disability and the ways in which context impacts on the implementation of policies and practices. METHODS: The current study employed a qualitative design underpinned by the principles of narrative inquiry and participant observation. Thirty adults with a variety of congenital and acquired disabilities (15 men and 15 women, ranging in age from 19 to 83 years) living in 12 rural communities in the Mpumalanga Province of South Africa were recruited through snowball sampling. Data collection comprised a combination of narrative inquiry and participant observation. Narratives were collected in SiSwati with the assistance of a SiSwati-speaking research mediator and were transcribed and translated into English. Data were analysed inductively according to the principles of thematic analysis. RESULTS: Findings confirmed that the experience of living with a disability in a rural area is associated with discrimination, social exclusion, and isolation and barriers to accessing services, underpinned by numerous context-specific experiences, including mortality rates, exposure to numerous and repeated forms of violence across the lifespan, and corruption and lack of transparency in the implementation of government policies and practices. These experiences are not currently reflected in the literature or in guidelines on the implementations of policies and service provision, and thus have the potential to offer novel insights into the barriers faced by persons with disabilities living in rural areas. CONCLUSIONS: The results of this study suggest that barriers to service provision extend beyond physical obstacles, and include a variety of sociocultural and sociopolitical barriers. By failing to take these into account, policies and current models of service provision are only able to provide limited support to persons with disabilities living in rural areas. The findings reveal narrative inquiry to be a powerful and culturally safe tool for exploring lived experience among vulnerable populations and hold significant implications for both practitioners and policy developers. Furthermore, it emerges that one-size-fits-all policies are unable to meet the needs of persons with disabilities living in rural areas. However, the implementation of site-specific needs analyses with the use of flexible and culturally appropriate tools has the potential to redress the discrepancies in policy implementation and can be used to strengthen institutional ties and referral pathways.

Understanding of genetic inheritance among Xhosa-speaking caretakers of children with hemophilia.

Hemophilia A and B are X-linked recessive inherited bleeding disorders that have a profound impact on the family of affected individuals. Education is vital to enable women to appreciate the implications of being a carrier and the implications for a prospective child. Prior research has shown that cultural, socio-economic and linguistic issues in South Africa are major barriers to communication for first-language Xhosa-speakers. This exploratory study aimed to investigate the basic knowledge of genetic inheritance among this cultural group in order to promote culturally-sensitive, effective genetic counseling. Ten in-depth interviews were conducted with Xhosa-speaking mothers or caregivers of boys with hemophilia. Results suggest that the participants had a very limited understanding of the clinical management, genetic consequences and cause of hemophilia. While treatment and care by health care service providers was fully accepted, several participants believed that traditional methods would provide them with more satisfactory explanations. These findings suggest that there is a critical need for socio-culturally tailored, language-specific education for families with hemophilia.

"Only two months destroys everything": a case study of communication about nonadherence to antiretroviral therapy in a South African HIV pharmacy context.

Adherence to antiretroviral treatment (ART) is a complex phenomenon and patients do not always adhere for a variety of reasons. The quality of communication and the therapeutic relationship between health professionals and patients have an important influence on adherence, as do contextual and environmental factors. Little qualitative research exists that examines health care interactions in the context of adherence counselling. This article presents a case study of a discussion about nonadherence between a pharmacy assistant and a patient in a South African HIV context. A hybrid analytical approach revealed various themes such as how the topic of nonadherence is addressed, participants' responses to the patient's nonadherence, and the process of negotiating a new commitment to adherence. The case provides insight into the impact of contextual factors on the interaction and challenges involved in discussing nonadherence-in particular, the patient's attempts to save face, the pharmacy assistant's irritation and anger, and the patient's expressed regrets. This case raises questions around issues of patient agency. Health professionals are encouraged to consider the influence of context, lifeworld, and culture on patients' ability to adhere to treatment regimens. By working to improve communication processes and strengthen the therapeutic relationship, patients may be empowered to achieve better adherence levels.

Botox(®) to reduce drooling in a paediatric population with neurological impairments: a Phase I study.

BACKGROUND: The treatment of drooling in a paediatric population with neurological impairments is clinically challenging. Surgery is considered invasive, while behaviour modification techniques, correction of situational factors and oral-motor therapy do not always produce sustained improvement. In recent years the use of Botox® to decrease drooling has been investigated. AIMS: To review the clinical data from a Drooling Treatment Project for children with neurological impairments and to establish the validity of the drooling severity and frequency rating scales, establishing Phase I-level information about the therapeutic use of submandibular salivary gland injections of Botox® in various contexts. METHOD & PROCEDURES: A retrospective, explanatory design was used to review the data. Nine children, seven with cerebral palsy and two with operculum syndrome, ranging in age from 5 to 17 years (mean = 9;3 years) were included. Drooling was assessed by qualified speech-language therapists using drooling rating scales, in five different situations and at different time points pre- and post-Botox® injection up to 6 months. Quantitative and qualitative analyses were computed. Parents'/primary caregivers' perceptions of drooling and treatment with Botox® were also considered using an interview form and a quality of life questionnaire. OUTCOMES & RESULTS: Statistically significant reductions in drooling with large effect sizes were obtained in the communicating and general appearance situations. There was a difference in the pattern of response between the children with cerebral palsy and those with operculum syndrome. Discrepancies between the parents and the speech-language therapists regarding the context of drooling reduction were found. Most parents/primary caregivers felt their children's lives and their own had improved following the Botox® injection and would repeat the treatment. The drooling rating scales were a valid method to assess drooling in a clinical situation. CONCLUSIONS & IMPLICATIONS: In the clinical setting of the Drooling Treatment Project, the results indicated that the context in which drooling occurs is an important factor and suggested the value of considering the situational context when making drooling judgments. Further, there was a difference in the pattern of response between the children with cerebral palsy and those with operculum syndrome, suggesting that aetiology may be involved in the response to Botox®.

The treatment of anomia in Sesotho: a case for parametric aphasiology.

South Africa, as a multilingual country, offers the opportunity for examining the interaction between aphasic symptomatology and the parameters of language. Effective intervention techniques depend on an understanding of clinical linguistics. This article describes an intervention study with two Sesotho-speaking individuals with anomia. Sesotho as a noun class and syllable-timed language offers the opportunity to study the influence of cueing techniques, which are based on such linguistic parameters. Word lists were designed using non-aphasic participants and three cueing techniques for anomia were evaluated over a period of 4 months. Findings suggested a positive response to the techniques of true phonemic cueing and prosodic cueing, whereas initial phonemic cueing (a technique commonly used for English-speaking anomic patients) had no impact. This supports the need for a parametrically informed approach to aphasia therapy and strengthens the recommendation that a linguistic basis is paramount in the training of effective clinicians.

Grandmothers as gems of genetic wisdom: exploring South African traditional beliefs about the causes of childhood genetic disorders.

With its diverse cultural and linguistic profile, South Africa provides a unique context to explore contextual influences on the process of genetic counseling. Prior research suggests intergenerational differences regarding models of causation which influence treatment-seeking paths. This pilot study therefore aimed to explore South African traditional beliefs regarding common childhood genetic disorders. Three focus groups were conducted with fifteen grandmothers from different cultural backgrounds in an urban community. Questions pertained to the role of the grandmother, traditional beliefs regarding causes of genetic disorders, explanations of heredity, and prevention and management of genetic disorders. Results indicate a variety of cultural explanations for causes of childhood genetic disorders. These causes can be classified into categories related to lifestyle, behavior, social issues, culture, religion, genetic, and familial causes. Prevention and treatment issues are also highlighted. These findings have implications for genetic counseling practice, which needs to include a greater focus on cultural issues.

"Tell me so I know you understand": pharmacists' verification of patients' comprehension of antiretroviral dosage instructions in a cross-cultural context.

OBJECTIVE: Patient comprehension of dosage instructions is an essential condition for adherence to treatment regimens, but previous studies show that pharmacists do not generally check understanding. This study aims to describe and discuss the effectiveness of various strategies for verifying patients' understanding of ARV dosage instructions in a cross-cultural context. METHODS: Twenty-six cross-cultural pharmacist-patient interactions in an ARV pharmacy in South Africa were analysed using Conversation Analysis techniques. Interviews with participants were analysed using Thematic Content Analysis. RESULTS: Various strategies for verifying patient understanding were identified in the data, including eliciting a demonstration of understanding, using specific questions to verify understanding, using response solicitations and monitoring patients' verbal and non-verbal responses. These strategies are illustrated with relevant data extracts. Interviews revealed that patients appeared to have good understanding of ARV-related concepts. CONCLUSION: These strategies for verification of patient understanding appear to be effective tools which enable pharmacists to identify misunderstandings or initiate clarification sequences. PRACTICE IMPLICATIONS: The strategies are felt to be particularly useful in cross-linguistic pharmacy interactions and have implications for other professionals.

Auditory disorders in a South African paediatric TBI population: some preliminary data.

South Africa has an exceptionally high incidence of traumatic brain injury in its paediatric population but very little systematic research has been conducted on the outcome of such injury. A number of socio demographic variables influence the mechanism of injury as well as its management. This paper reports on a study documenting the educational and audiological outcomes of a group of 100 subjects who sustained their injuries prior to the age of 12 years. The hearing and communication profile of this group is considered in relation to educational outcome. An illustrative case study will demonstrate the multiple influences on outcome in this setting, as well as the need for integrated team management. In the sample, 31% had a reported hearing loss, confirmed audiologically in 14% of subjects. The majority of the sample returned to a mainstream school. However, analysis indicated that about 75% of the sample was in need of specialized education, while only 22% of that sample had received any additional support. The implications of these findings for audiological policy and practice are highlighted.

Community perspectives on tuberculosis care in rural South Africa.

Patient nonadherence to tuberculosis (TB) treatment is an ongoing challenge, particularly since the advent of drug-resistant TB and complications posed by HIV/AIDS. Some solutions may lie in understanding patient and community perspectives about barriers to TB care and treatment adherence. Using a qualitative framework, we explored community perceptions and beliefs about TB and perceived facilitators and barriers to care in a rural South African community affected by TB. We were particularly interested in capturing cross-cutting themes and the "merged voices" of participants. Interviews were conducted in 2013 and 2014 with 43 participants, including home-based care workers, clinic staff, patients living with TB and community members in and around a primary healthcare clinic. The data were analysed using principles of thematic analysis. The study reveals the complex interplay between contextual factors and community understandings of the disease. Cultural beliefs about causality and treatment-seeking paths were often mentioned in conjunction with biomedical views. There was a strong interface between TB and HIV in this community, and knowledge of TB was often confused with HIV. HIV-related stigma has been extended to those living with TB. The impact of poverty on treatment adherence was a particularly important theme. Other themes related to the role of the clinic in the community. Our study highlights the socioeconomic vulnerability of this community and the fragility of existing care systems. The findings reinforce the need for a community-centred approach to TB care that takes cognisance of lifeworld issues. We discuss some implications of this study for practice and policy.

Bench, bed and beyond: Communication and responsibility in decentralised tuberculosis care.

BACKGROUND: South Africa faces one of the world's worst drug-resistant tuberculosis epidemics. Implementing successful care in this context has proven challenging for a number of reasons. Communication is an essential yet neglected feature of care and research in the field of tuberculosis. AIM: The primary aim of this qualitative study was to explore communication facilitators and barriers at several tuberculosis care sites. In this article, we focus on communication practices across the chain of diagnosis, treatment, discharge and follow-up in decentralised care approaches and present evidence of gaps in communication. SETTING: The study was conducted at three tuberculosis care sites in two South African provinces. METHODS: Participants included healthcare workers, patients, community members and home-based carers. Data included 79 interviews, 4 video-recorded interactions between patients and healthcare workers, and ethnographic observations at each site. We analysed the data using thematic analysis and a qualitative sociolinguistic framework. RESULTS: Communication in decentralised care contexts is complex because of multiple sites and role players. Responsibility for communication seems to be unduly placed on patients, treatment guidelines are not implemented consistently across sites and assumptions are made about the role of others in the chain. Patient and healthcare worker reports suggest confusion and frustration. CONCLUSION: Communication in the South African tuberculosis care context appears fragile and current mechanisms for detecting flaws in the care chain are not sensitive to communication issues. We make recommendations for strengthening home-based care resources, providing team training and focusing on communication processes in monitoring and evaluating systems.

The Interface Between Violence, Disability, and Poverty: Stories From a Developing Country.

People with disabilities are vulnerable to multiple forms of violence in their everyday lives, including structural violence, deprivation, and physical, emotional, and sexual exploitation. Despite increasing reports of violence against people with disabilities, little is known about this phenomenon, especially in the context of poverty. Furthermore, the various types of violence have traditionally been studied in isolation, which has led to a limited understanding of the nature and persistence of violence in society, and has affected our understanding of the relationship between different forms of violence. In this article, we explore the relationship between violence, disability, and poverty among people living in a rural area of South Africa. Thirty adults with a variety of disabilities living in 12 rural villages in the Mpumalanga Province of South Africa participated in the study. Each of the participants was provided with an opportunity to tell their life story. Narrative inquiry and participant observation were used to explore the ways in which violence pervades the participants' everyday experiences. Results were analyzed using thematic analysis and suggest that in the context of poverty, it is impossible to separate the experience of disability from the experience of violence. Structural violence was shown to underpin all other forms of interpersonal violence, making persons with disabilities vulnerable to additional forms of exploitation, and serve to further isolate people with disabilities from society, compromising both health and human rights. The findings suggest that an understanding of contextual factors is fundamental to understanding the relationship between violence and disability.

Interprofessional communication in organ transplantation in Gauteng Province, South Africa.

BACKGROUND: Communication is essential to the transplant process, but it is challenging in South Africa (SA) because of the complexity of the country and the health system, the nature of transplantation as a technical procedure with inherent psychological considerations, and the large number of professionals involved. Transplant communication has not been explored in SA, and this study was the first to use health communication methods to generate empirical evidence relating to it. OBJECTIVE: To explore communication in transplant settings in Gauteng Province, SA. METHODS: Qualitative methods were used to collect data across six hospitals and transplant centres in Gauteng. State and private institutions were equally represented. Health professionals and transplant co-ordinators participated. Thematic analysis of data was undertaken. RESULTS: Facilitators of interprofessional transplant communication included appreciation of its importance to good practice and cohesive individual transplant teams. Barriers to interprofessional communication were observed when individual teams had to come together in a multi-team, interdisciplinary environment, when interchange became aggressive, and when information was not passed on to other health professionals timeously. These barriers had implications for continuity of care and ethics, which could lead to moral distress. CONCLUSION: Transplantation in Gauteng is characterised by aspects of good teamwork, and the importance of effective communication is acknowledged. Transplantation also faces some challenges in terms of interprofessional communication. Recommendations for mitigating some of the gaps include integrating a health communication specialist into the transplant process, 'knotworking', the use of apology, and an advance warning text-message system for transplant professionals.

When seconds count: A study of communication variables in the opening segment of emergency calls.

The opening sequence of an emergency call influences the efficiency of the ambulance dispatch time. The greeting sequences in 105 calls to a South African emergency service were analysed. Initial results suggested the advantage of a specific two-part opening sequence. An on-site experiment aimed at improving call efficiency was conducted during one shift (1100 calls). Results indicated reduced conversational repairs and a significant reduction of 4 seconds in mean call length. Implications for systems and training are derived.

Managing language mismatches in emergency calls.

The complex linguistic profile of South Africa has the potential to limit the efficiency of emergency calls. Emergency services depend on rapid resolution of a call, dispatch of an ambulance and response at scene. Resolving language mismatches is a critical feature of everyday practice in such a setting. This study examined accommodation to language shifts in a call centre using conversation analysis methods. Three main call trajectories were identified and the analysis suggested marked differences in responsivity, reflecting attitudinal and societal stratification. Conversation analysis provided insight into communication barriers and contextual features, which have implications for training.