Jennifer Watermeyer

Why don't patients take their drugs? The role of communication, context and culture in patient adherence and the work of the pharmacist in HIV/AIDS

OBJECTIVE This study examined facilitators and barriers to adherence in four South African antiretroviral therapy (ART) clinic sites and explored context and communication factors in relation to the role of the pharmacist. METHODS Data were collected from interviews and narratives of patients and health professionals around the issues of adherence and qualitatively analysed using principles of Thematic Content Analysis. RESULTS Findings confirm the complex interplay between illness, communication, sociocultural, economic, context and systemic issues. Analysis suggests adherence is multifaceted and reinforces the critical role of communication factors in achieving concordance between patient and pharmacist. CONCLUSION Successful treatment of HIV/AIDS depends on pharmacists and healthcare teams understanding contextual and interactional factors which play a role in adherence. PRACTICE IMPLICATIONS The findings reinforce the importance of embedding a patient-centred approach in the training and everyday practice of pharmacists. The value of qualitative methods in understanding barriers to adherence and the potential value of the cultural broker in intercultural settings is discussed. Some suggestions are made as to how adherence counselling can be made relevant and effective.

Informed consent and aphasia: Evidence of pitfalls in the process

Background: Persons with aphasia are particularly vulnerable when taking part in research studies. The process of informed consent (IC) depends on a number of factors, which may be compromised in aphasia. Very little research has been conducted on the process, and the issue is often neglected in published research. Aims: The aim of the research was to identify potential facilitators and barriers to the process of IC, focusing on verbal and nonverbal components of the interaction. Methods & Procedures: As part of a larger study, the IC process for three trial participants was examined in detail. Specific portions of the enrolment process dealing with the explanation of the concepts “placebo”, “randomisation”, and “double blind” were analysed. Our methods were qualitative and comprised systematic observation and analysis of video‐recorded recruitment as well as feedback sessions with these participants after the study had been completed and their participation in the research was over. Outcomes & Results: Results demonstrated that the process of IC was widely discrepant. There were marked differences in the way that the participants reacted to the process and in the behaviours of the clinician during each enrolment, also differences in terms of length of enrolment and the degree of confidence with which the researchers believed consent had been authentic. We also present a review of published research on informed consent in aphasia, with this evidence suggesting that IC is often neglected and at best difficult to obtain. Paradoxically, attempts to facilitate the process seemed to have an inhibitory effect. Conclusions: There are multiple influences on the process of IC in aphasia, which include the potential for therapeutic misconception. The process seems particularly jeopardised in qualitative and clinical research. There are many possible reasons why a person might agree to take part in a trial, but there are numerous pitfalls and barriers to the process. Recommendations for policy and practice are made, and a model proposed for enhancing IC in aphasia.

She will hear me: how a flexible interpreting style enables patients to manage the inclusion of interpreters in mediated pharmacy interactions.

Interpreters are frequently called upon to assist with communication across language barriers in health care contexts. Research has neglected the voice of the patient, and interpreting practices are often dominated by assumptions about how best to include an interpreter in interactions. Data from a South African study of interpreted pharmacy interactions provide some novel insights into how a flexible interpreting style may enable patients to initiate and manage the inclusion of interpreters in health care interactions. This study confirms the inappropriateness of the conduit model of interpreting and suggests that a flexible approach based on patient preferences and communicative needs may be more successful in realizing communication goals and achieving patient-centered interactions. Recommendations for how this style might be implemented are provided.

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.

Caregiver recall and understanding of paediatric diagnostic information and assessment feedback.

Abstract Objective: Providing appropriate feedback to caregivers is an important part of the paediatric audiological assessment. This preliminary study explored caregiver recall and understanding of audiological diagnostic information subsequent to an initial paediatric diagnostic assessment. Design: A qualitative study was conducted at an audiology clinic at a hospital in South Africa. Data collection included observation and video-recording of assessment and feedback sessions as well as post-session semi-structured interviews with the audiologists and caregivers. Recorded sessions were analysed using sociolinguistic methods and a transcription-less approach. Interviews were analysed via content analysis. Study sample: Participants included four audiologists and five caregivers whose children had been referred for an initial audiological assessment. Results: Feedback sessions included explanations of the hearing mechanism, tests, audiogram, diagnosis and recommendations. Most caregivers were able to recall the final diagnosis and recommendations, but demonstrated poor recall and understanding of explanations of the audiogram and hearing mechanism. Conclusions: Results highlight the importance of tailoring information towards specific caregiver needs during feedback sessions and acknowledging the goals and agenda of the caregiver. There is a need for a greater focus on information counselling in curricula and training programmes, and several suggestions are made in this regard.

‘Are we allowed to disclose?’: a healthcare team's experiences of talking with children and adolescents about their HIV status

Talking with a child about their HIV status is a complex, emotionally laden and difficult task for caregivers and healthcare providers. Disclosure is an important process which may have psychosocial and health benefits. Despite existing guidelines and materials, disclosure does not always happen for various reasons.

This clinic is number one: a qualitative study of factors that contribute toward "successful" care at a South African Pediatric HIV/AIDS clinic.

HIV/AIDS has significantly affected health care practices. The need for high adherence and regular clinic visits places pressure on health care providers and patients. Poor quality of care has been described in many contexts, but some clinics have achieved excellent treatment results. Using a success case approach, this study aimed to understand factors which contribute to successful care at a South African pediatric HIV/AIDS clinic with documented high patient adherence and follow-up rates. Data included over 50 hours of ethnographic observations and interviews with a total of 35 clinic staff and caregivers. Thematic analysis highlighted strong congruence between caregiver and staff perceptions. Factors which seemed to contribute to successful care included organizational routines, staff–patient relationships, communication, teamwork, leadership, job commitment, caregivers’ negative experiences at other clinics, and faith in the “life-saving” care at this clinic. Results suggest the need for all factors to be present in order to promote quality of care. Recommendations for other clinic settings are discussed.

Features of cultural brokerage in interpreted child psychiatry interactions: a case of paradoxical practice

Many intercultural health care interactions take place in the presence of a third party who is usually expected to serve a function which extends well beyond that of mere language interpreter. An examination of these features is likely to provide insight into the wider organisational and environmental context and provide directions for training. We report on a study in a child psychiatry clinic in South Africa which examined a partnership between a physician and a cultural broker. The interactive and language dynamics of 10 mediated interviews were explored using qualitative methods and video-recordings of interactions and interviews with participants. Data analysis included transcription, translation (from Xhosa) and back-translation using principles of conversation and thematic analysis. Two organisational routines emerged in the triad (use of asides and quotatives) which had a paradoxical effect: while they helped to break down the typical asymmetry of the interactions and enabled displays of mutual understanding, there were also occurrences aligned with problematic interpreting practice. While some of these triadic features seem unconventional, paradoxically they may have validating and relationship consequences that can be understood within a framework of the Ethics of Care and suggest the need for models of evaluation and training more sensitive to context.

Communicating dosage instructions across cultural and linguistic barriers: Pharmacist-patient interactions in a South African antiretroviral clinic

Over the past decade, HIV/AIDS has spread with astounding rapidity. The global introduction of antiretroviral drugs (ARVs) has decreased mortality rates and brought hope to many. However, the nature of ARV treatment is such that the patient must remain on it for the duration of life and research has shown that adherence levels of 80-95% are required to ensure treatment success (Gross et al. 2001; Paterson et al. 2000). The advent of the HIV/AIDS epidemic has greatly increased the pharmacists workload. Aside from dispensing drugs and monitoring for drug interactions and toxicities, pharmacists are also expected to provide counselling and advice that is tailored towards each patients needs, as well as to ensure patient adherence to ARVs (Hardy 2005; Kansanaho 2006). However, pharmacists are rarely trained in communication skills (Salter et al. 2007). Communication has been identified as a huge potential barrier in health settings and there is evidence of interference from psychosocial and HIV/Aids-related factors, as well as cultural and linguistic barriers. The manner in which a message is communicated by a health professional and understood by a patient is vital, because poor communication or misunderstanding of instructions may lead to non-adherence or difficulties in taking medicines (Sleath et al. 1999). In an age of globalisation, patient caseloads are increasingly multilingual and multicultural and the pharmacist must play a specific role in ensuring that communication with patients is successful despite cultural and linguistic barriers.

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.