Claire Penn

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.

The profiling of syntax and pragmatics in aphasia

The interactive language of 14 adult aphasic patients was analysed using a syntactic profile (LARSP) and a pragmatic profile, the Profile of Communicative Appropriateness (PCA). Performance on the pragmatic profile, which comprised six separate scales, was correlated with performance on standard measures of communication. The approach to data analysis was taxonomic. Results of the syntactic analysis revealed a characteristic profile type for non-fluent aphasic subjects and at least three distinct profile types for the more fluent subjects. Performance of the subjects on the individual scales of the PCA was widely varied and could not be consistently attributed to aphasia type or locus of lesion, although the degree of severity seemed an accurate predictor of overall skills. Certain global components of communicative competence seemed better retained in the subjects than those demanding specific skills relating to manner of production and control of discourse. A possible relationship between subject variab...

Executive dysfunction as an explanatory basis for conversation symptoms of aphasia: A pilot study

Background: Lack of communicative success for people with aphasia is no longer seen as purely a linguistic deficit. Instead, the integrity of the executive functions (EF) is thought to be at least partly responsible for successful communication, particularly during conversation. In order to inform clinicians regarding both conversation and EF, a merging of two paradigms—conversational and neuropsychological approaches—is proposed. This paper was presented at the Clinical Aphasiology Conference, Ghent, Belgium, May 2006. Aims: First, we explore the relevance of both neuropsychological and conversational approaches to the assessment of aphasia. Second, we present the executive battery that was designed and administered to a single participant (MS) to assess various aspects of EF. The results of a Conversation Analysis (CA) undertaken on an excerpt of MSs conversation are given. Results of the EF analysis are presented with the CA in order to highlight proposed relationships that may impact on conversational strengths and difficulties. Methods and Procedures: The executive battery was designed to assess the following constructs: attention, verbal and nonverbal working memory, memory, planning, generation, and concept formation. The participant was video‐recorded in conversation with a familiar interlocutor. Transcriptions were derived and subjected to Conversation Analysis. A discussion of conversational features is presented in conjunction with results from the executive battery. Outcomes and Results: Several areas including simple sustained attention, interference control, memory, and planning appeared to be preserved. This profile occurred together with the ability to maintain concentration and track meaning during interactions with one interlocutor. Memory for previously stated information was preserved as well as the ability to think and plan ahead. These strengths also co‐occurred with intact turn taking and topic management. However MSs performance also indicated difficulty with shifting attention, verbal and nonverbal working memory, generation, and concept formation. The latter two especially appeared to be mediated by the effects of perseveration, which resulted from a reduced ability to shift focus. In terms of conversation, MS reported difficulty in multi‐party settings. In addition, conversational repair was affected by poor generation and selection of strategies as well as an inability to shift away from current ineffectual forms of expression to more effective, flexible, and potentially successful forms of communication. Conclusions: The notion of merging two distinct and historically separate paradigms presents unique and valuable opportunities for creative and effective treatment of individuals with aphasia who have reached plateaus or who, as in this case, present with relatively intact linguistic skills on formal testing but experience daily frustration during conversation.

Notes and Discussion Papers: 1: Non-verbal communication of aphasic patients

The non-verbal communication of eleven aphasic patients was investigated within a dyadic communication framework. Results were then compared with those of standardised aphasia measures. Appropriateness and functions of the non-verbal behaviours were found to differ among patients and to correlate poorly with other test measures. Case examples are provided and neurological and clinical implications are discussed.

Pragmatic assessment and therapy for persons with brain damage: what have clinicians gleaned in two decades?

Pragmatic competence comprises a number of interrelated skills which manifest in real-time in a range of adaptive behaviors and which are driven by underlying cognitive processes that appear to be variably compromised in brain damage. Differential neurological profiles reflect different pragmatic outcomes. The essence of pragmatic assessment and therapy for clinicians is therefore to capture accurately, measure, and, where possible, enhance the ability of the individual to adapt to a changing communicative environment. Assessment measures differ along a number of dimensions. A distinction is drawn between testing and assessment and the argument proposed that for clinical purposes, it is helpful to keep the notions of functional and pragmatic distinct.

Discourse in a right-hemisphere brain-damaged subject

Abstract This study analysed narrative and procedural discourse samples produced by a right-hemisphere brain-damaged (RHBD) and a non-brain-damaged subject according to a model of discourse coherence. It comprised an investigation in terms of discourse grammar, syntactic complexity, clarity and organizational skills. Results indicated that the RHBD subjects discourse was verbose, noninformative, irrelevant and repetitive and characterized by some reduction in discourse grammar and a higher incidence of unnecessary detail. This finding correlated closely with performance on the Profile of Communicative Appropriateness but was at variance with the oral language portion of the Boston Diagnosis of Aphasia Examination. The method of coherence analysis was considered to be a sensitive and appropriate assessment tool for the discourse of RHBD patients. The data obtained from the RHBD subject were interpreted within two cognitive models: a hypothetical model of semantic memory and a parallel distributed processi...

Absence of GJB2 gene mutations, the GJB6 deletion (GJB6-D13S1830) and four common mitochondrial mutations in nonsyndromic genetic hearing loss in a South African population.

OBJECTIVE The purpose of this study was to determine the prevalence of mutations in the GJB2 gene, the GJB6-D13S1830 deletion and the four common mitochondrial mutations (A1555G, A3243G, A7511C and A7445G) in a South African population. METHODS Using single-strand conformation polymorphism and direct sequencing for screening GJB2 mutation; Multiplex PCR Amplification for GJB6-D13S1830 deletion and Restriction Fragment-Length Polymorphism (PCR-RFLP) analysis for the four common mtDNA mutations. We screened 182 hearing impaired students to determine the frequency of these mutations in the population. RESULTS None of the reported disease causing mutations in GJB2 nor any novel pathogenic mutations in the coding region were detected, in contrast to the findings among Caucasians. The GJB6-D13S1830 deletion and the mitochondrial mutations were not observed in this group. CONCLUSION These results suggest that GJB2 may not be a significant deafness gene among sub-Saharan Africans, pointing to other unidentified genes as responsible for nonsyndromic hearing loss in these populations.

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.

Compensation and language recovery in the chronic aphasic patient

Abstract Two chronic fluent aphasic patients were assessed on a range of standard, functional and linguistic measures at a testing interval of five years. Though no change was noted in the performance of either patient on the standard test, a shift was seen in both patients in functional communication and on certain syntactic and pragmatic dimensions. These shifts were interpreted within a framework of compensatory strategies. Certain processes common to both patients and related to increased communicative effectiveness are described and discussed. The chronic patient is viewed as an individual with potential for dynamic functional language change in certain aspects of communication not directly linked to the structural components of the message. Implications for therapy are discussed.

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.