Filling the language gap: the feasibility of communication resources used in the provision of healthcare for HIV/AIDS and tuberculosis in the Eastern Cape, South Africa
- Authors: Von Witt, Nathalia Jane
- Date: 2025-04-02
- Subjects: Communication in community health services South Africa Eastern Cape , Language and languages South Africa Eastern Cape , Multilingualism , Medical care South Africa , Communication in public health , Health literacy
- Language: English
- Type: Academic theses , Doctoral theses , text
- Identifier: http://hdl.handle.net/10962/478504 , vital:78192 , DOI 10.21504/10962/478504
- Description: South Africa has the largest number of Human Immunodeficiency Virus (HIV)-positive people in the world, the third-highest rate of Tuberculosis (TB) infections, and the second-highest rate of Multi-Drug Resistant TB (MDR-TB) globally, with up to 60% of HIV-positive healthcare users (HCUs) infected with TB as a co-infection. Both HIV/AIDS and TB require strict medicines adherence for disease management or treatment respectively; however, this is often not attained, and as such these statistics also represent lives affected by or lives lost to these diseases. Moreover, in South Africa, up to 80% of healthcare consultations are conducted through a second language. Despite language policies suggesting the contrary, African languages are neglected in healthcare provision in South Africa. This perpetuates inequalities within the South African healthcare system by limiting HCUs understanding of and agency in their own healthcare and maintaining a barrier to more effective treatment. Such language barriers may also result in HCUs defaulting on treatment. Added to this, the fear and mistrust arising from language power dynamics contributes to high rates of avoidance behaviour. This research therefore aimed to (a) explore how healthcare professionals (HCPs) and HCUs communicate when they are not fluent in the same language in care for HIV/AIDS and TB patients; (b) develop practical and feasible strategies that would enable HCPs to address language barriers in their consultations for HIV and TB and (c) to empirically evaluate these strategies in a pilot feasibility trial in the Eastern Cape. The first aim (a) concerning the problem of language barriers in healthcare consultations was addressed through identifying communication barriers experienced by HCPs in South Africa, exploring the strategies used to navigate or alleviate these barriers, creating and implementing communication resources, and analysing the effects of these resources on HCPs’ communication. A selective narrative review was conducted (Chapter 2) to identify the main communication problems experienced by HCPs and HCUs, as well as the main communication strategies and resources used by HCPs to reduce these communication problems. This was further explored by conducting two needs analyses with HCPs (n=31) in South Africa, and specifically in the Eastern Cape, which revealed differing perspectives on health communication and confirmed HCPs’ need for communication resources. For the second aim (b), existing communication resources were reviewed and selected or further developed following a Participatory Action Research approach, and then (c) empirically evaluated in a pilot feasibility trial with six healthcare sites in the Eastern Cape. Both the needs analyses and the pilot feasibility trial were adapted to employ an online or blended approach due to COVID-19-related limitations. The feasibility and acceptability of both the study protocol and the proposed communication resources were evaluated. Three major findings emerged from this research. First, this research echoed existing literature confirming that HCPs do not have the support they need at a structural level. Second, while it was found that there is no one-size-fits-all solution for resources and training to improve HCP-HCU communication, it was noted that the most appropriate resources are those that are flexible, and those that support HCPs’ language learning. HCPs who were already sensitive to communication barriers and were already taking steps to improve their second language (L2) proficiency also took initiative to use the resources in ways other than those suggested in order to best support the communication needs of them and the HCUs they consulted. Third, and linked to the second finding, it was found that communication resources that covered conditions including, but not limited to, HIV and TB were more appropriate. HCPs who used the resources showed a small, although not statistically significant, increase in communication satisfaction, satisfaction with resource support, and trust after using the resources for one month. Although implementation problems were encountered in some settings of the intervention, it was found that this intervention has the potential to be further evaluated in a larger, multi-site randomised controlled trial (RCT). These findings inform recommendations which are made to improve the feasibility of such a study in order to conduct an RCT; to further develop the resources in order to enhance communication between HCPs and HCUs both in HIV and TB consultations and in other fields of healthcare; and to implement a similar intervention at the university level and as Continuing Medical Education. The insights gained into HCPs’ support for language support resources, which resources were used, and particularly how they were used, are significant for taking actionable steps in supporting HCPs’ provision of more equitable healthcare in multilingual South Africa. , Thesis (PhD) -- Faculty of Humanities, Languages and Literatures, 2025
- Full Text:
- Date Issued: 2025-04-02
- Authors: Von Witt, Nathalia Jane
- Date: 2025-04-02
- Subjects: Communication in community health services South Africa Eastern Cape , Language and languages South Africa Eastern Cape , Multilingualism , Medical care South Africa , Communication in public health , Health literacy
- Language: English
- Type: Academic theses , Doctoral theses , text
- Identifier: http://hdl.handle.net/10962/478504 , vital:78192 , DOI 10.21504/10962/478504
- Description: South Africa has the largest number of Human Immunodeficiency Virus (HIV)-positive people in the world, the third-highest rate of Tuberculosis (TB) infections, and the second-highest rate of Multi-Drug Resistant TB (MDR-TB) globally, with up to 60% of HIV-positive healthcare users (HCUs) infected with TB as a co-infection. Both HIV/AIDS and TB require strict medicines adherence for disease management or treatment respectively; however, this is often not attained, and as such these statistics also represent lives affected by or lives lost to these diseases. Moreover, in South Africa, up to 80% of healthcare consultations are conducted through a second language. Despite language policies suggesting the contrary, African languages are neglected in healthcare provision in South Africa. This perpetuates inequalities within the South African healthcare system by limiting HCUs understanding of and agency in their own healthcare and maintaining a barrier to more effective treatment. Such language barriers may also result in HCUs defaulting on treatment. Added to this, the fear and mistrust arising from language power dynamics contributes to high rates of avoidance behaviour. This research therefore aimed to (a) explore how healthcare professionals (HCPs) and HCUs communicate when they are not fluent in the same language in care for HIV/AIDS and TB patients; (b) develop practical and feasible strategies that would enable HCPs to address language barriers in their consultations for HIV and TB and (c) to empirically evaluate these strategies in a pilot feasibility trial in the Eastern Cape. The first aim (a) concerning the problem of language barriers in healthcare consultations was addressed through identifying communication barriers experienced by HCPs in South Africa, exploring the strategies used to navigate or alleviate these barriers, creating and implementing communication resources, and analysing the effects of these resources on HCPs’ communication. A selective narrative review was conducted (Chapter 2) to identify the main communication problems experienced by HCPs and HCUs, as well as the main communication strategies and resources used by HCPs to reduce these communication problems. This was further explored by conducting two needs analyses with HCPs (n=31) in South Africa, and specifically in the Eastern Cape, which revealed differing perspectives on health communication and confirmed HCPs’ need for communication resources. For the second aim (b), existing communication resources were reviewed and selected or further developed following a Participatory Action Research approach, and then (c) empirically evaluated in a pilot feasibility trial with six healthcare sites in the Eastern Cape. Both the needs analyses and the pilot feasibility trial were adapted to employ an online or blended approach due to COVID-19-related limitations. The feasibility and acceptability of both the study protocol and the proposed communication resources were evaluated. Three major findings emerged from this research. First, this research echoed existing literature confirming that HCPs do not have the support they need at a structural level. Second, while it was found that there is no one-size-fits-all solution for resources and training to improve HCP-HCU communication, it was noted that the most appropriate resources are those that are flexible, and those that support HCPs’ language learning. HCPs who were already sensitive to communication barriers and were already taking steps to improve their second language (L2) proficiency also took initiative to use the resources in ways other than those suggested in order to best support the communication needs of them and the HCUs they consulted. Third, and linked to the second finding, it was found that communication resources that covered conditions including, but not limited to, HIV and TB were more appropriate. HCPs who used the resources showed a small, although not statistically significant, increase in communication satisfaction, satisfaction with resource support, and trust after using the resources for one month. Although implementation problems were encountered in some settings of the intervention, it was found that this intervention has the potential to be further evaluated in a larger, multi-site randomised controlled trial (RCT). These findings inform recommendations which are made to improve the feasibility of such a study in order to conduct an RCT; to further develop the resources in order to enhance communication between HCPs and HCUs both in HIV and TB consultations and in other fields of healthcare; and to implement a similar intervention at the university level and as Continuing Medical Education. The insights gained into HCPs’ support for language support resources, which resources were used, and particularly how they were used, are significant for taking actionable steps in supporting HCPs’ provision of more equitable healthcare in multilingual South Africa. , Thesis (PhD) -- Faculty of Humanities, Languages and Literatures, 2025
- Full Text:
- Date Issued: 2025-04-02
The design and evaluation of targeted patient-centred health information to improve knowledge and behavioural outcomes in tuberculosis patients with limited literacy
- Authors: Patel, Sonal
- Date: 2015
- Subjects: Tuberculosis Patients , Health literacy , Patient education , Communication in medicine , Picture-writing
- Language: English
- Type: Doctoral theses , text
- Identifier: http://hdl.handle.net/10962/194071 , vital:45420 , DOI 10.21504/10962/194071
- Description: South Africa carries a significant TB burden as evidenced in the 2013 statistics which report 450 000 new active TB cases and 890 000 TB-related mortalities. For successful treatment outcomes, 90% adherence is necessary, but many patients prematurely discontinue treatment due to poor knowledge and understanding of their complex TB medicines. Patient education is pivotal in improving knowledge, health literacy and behavioural outcomes such as health information seeking, self-efficacy and adherence. In the under-resourced South African healthcare system, time and capacity to adequately counsel patients are limited. The value of written medicine information (WMI) to supplement the verbal information provided by healthcare professionals (HCPs) has been widely investigated but minimal South African research is available. Current WMI distributed in South Africa is mainly generated by pharmaceutical manufacturers and is complex, incomprehensible and undesirable to patients. TB-related WMI focuses mainly on the disease, with little information relating to TB medicines and their use. The overall aim of this project was to improve patient knowledge about their TB medicines through the use of a simple illustrated patient information leaflet (PIL). Objectives to achieve this aim included: investigation of the medicine information seeking behaviour (MISB) of long term patients attending public health sector facilities; the development and validation of a medicine literacy test (MLT) to identify patients with limited health literacy requiring additional support and counselling; the development and evaluation of a patient-centred illustrated PIL for first-line TB treatment; the assessment of self-efficacy and adherence using modified versions of the HIV Treatment Adherence Self-Efficacy Scale (HIV-ASES) and Morisky 8-item Medicine Adherence Scale (MMAS-8), respectively, and the investigation of the impact of the PIL on patient knowledge and these health-related behaviours. Six focus group discussions (FGDs) conducted in 34 isiXhosa-speaking patients with limited formal education taking long-term treatment explored themes related to information needs, information-seeking practices and awareness of and ability to utilize information sources. Codes were analysed and potential themes and subthemes were identified and refined. The findings of this study reflected a passive, disempowered patient due to both patient-related and systemic healthcare factors. Poor awareness of information sources, lack of health-related knowledge, stigma and lack of awareness of the importance of appropriate medicine-related knowledge contributed to a lack of information-seeking practice. Patients neither asked questions nor were encouraged to do so. All expressed an unmet need for information and a desire for receiving relevant, appropriate, written medicine-related information. Feedback from this phase of the study was used to inform the development of the targeted patientcentred PIL. A double-sided A4 PIL containing information about TB medicines was designed giving careful consideration to content, format and layout features. Twenty five pictograms were designed through a rigorous, iterative design process and were included in the PIL that was evaluated in a randomised control trial (RCT) conducted amongst 120 TB patients attending a high burden TB clinic in South Africa. Interviews were conducted in either isiXhosa or Afrikaans via a trained interpreter. Patients were randomly allocated to either a control (standard care) or an experimental group (standard care plus brief counselling using the PIL). Two interviews were conducted using a prepared questionnaire; one at baseline followed by a 4-week follow-up. Baseline data included demographics, medicine literacy test, health information sources, knowledge of TB medicines, self-reported adherence and self-efficacy. Data collected at the 4-week follow-up interview included TB knowledge, self-reported adherence, self-efficacy, opinion of TB medicine information and interpretation of pictograms. Data were analysed using t-test, correlations, chi-square and ANOVA tests at a 0.05 level of significance. The PIL was successful in improving patient knowledge of the disease, TB medicine-taking, side effects, drug-resistant TB and HIV and TB co-infection. At baseline, there was no significant difference in the overall mean percentage knowledge score between the control and experimental groups (p=0.074). At follow-up, the percentage knowledge score for the experimental group increased significantly from 59.0% to 84.6% (p<0.001) and showed a significantly higher score than the control group (p<0.001), displaying evidence of the impact of the PIL as a counselling tool on patient knowledge. The PIL generated a highly positive response in the experimental group who indicated that they had referred to the leaflet over the last month and that it had played an important role in improving their TB medicine-related knowledge. This was reflected in the experimental group knowledge score of greater than 80% for almost three quarters of the patients whereas only 14% in the control group achieved this score. Patients appreciated the inclusion of pictograms and strongly felt that they helped them to recall and understand the textual PIL content. The study found that patients want side effect information and, interestingly, did not perceive the presentation of side effects in pictorial form to constitute a risk factor for nonadherence. Use of the illustrated PIL (experimental group) resulted in a significant improvement in patient self-efficacy (p=0.002), but showed no effect on self-reported adherence (p=0.563). Neither self-efficacy nor adherence was influenced by gender, age or education. An education effect on knowledge was only observed in the control group at baseline. The newly developed MLT was shown to be a valid and reliable tool and a moderate, positive and significant correlation was noted between the MLT score and baseline TB medicine-related knowledge in both the control and experimental groups. As there is a paucity of studies investigating the influence of take-home written leaflets on TB medicine knowledge and on patient behaviour, this study represents a significant knowledge contribution. It is the first study to report the development and evaluation of a patient-centred PIL to address the dearth of available TB medicine information. The use of targeted user-friendly, illustrated information leaflets can be a valuable counselling aid to improve patient knowledge and self-efficacy, particularly among patients with limited literacy. However, careful consideration of the design and content, with input from the endusers at all stages of the process, will optimise its effectiveness. The proposed framework for the development and implementation of patient-centred health and medicines information in a developing country context presented in this thesis could be used as a theoretical basis for informing the development of effective information materials targeting other disease states. Local patients taking TB medicines identified nurses, WMI and media as their current sources of information but they expressed a strong desire to know more about their treatment. Targeted public health interventions that focus on medicine-taking information and behaviours and encourage patients to adopt a more active, questioning role in health consultations could improve health literacy and empower patients in their medicine-taking practices. , Thesis (PhD) -- Faculty of Pharmacy, Pharmacy, 2015
- Full Text:
- Date Issued: 2015
- Authors: Patel, Sonal
- Date: 2015
- Subjects: Tuberculosis Patients , Health literacy , Patient education , Communication in medicine , Picture-writing
- Language: English
- Type: Doctoral theses , text
- Identifier: http://hdl.handle.net/10962/194071 , vital:45420 , DOI 10.21504/10962/194071
- Description: South Africa carries a significant TB burden as evidenced in the 2013 statistics which report 450 000 new active TB cases and 890 000 TB-related mortalities. For successful treatment outcomes, 90% adherence is necessary, but many patients prematurely discontinue treatment due to poor knowledge and understanding of their complex TB medicines. Patient education is pivotal in improving knowledge, health literacy and behavioural outcomes such as health information seeking, self-efficacy and adherence. In the under-resourced South African healthcare system, time and capacity to adequately counsel patients are limited. The value of written medicine information (WMI) to supplement the verbal information provided by healthcare professionals (HCPs) has been widely investigated but minimal South African research is available. Current WMI distributed in South Africa is mainly generated by pharmaceutical manufacturers and is complex, incomprehensible and undesirable to patients. TB-related WMI focuses mainly on the disease, with little information relating to TB medicines and their use. The overall aim of this project was to improve patient knowledge about their TB medicines through the use of a simple illustrated patient information leaflet (PIL). Objectives to achieve this aim included: investigation of the medicine information seeking behaviour (MISB) of long term patients attending public health sector facilities; the development and validation of a medicine literacy test (MLT) to identify patients with limited health literacy requiring additional support and counselling; the development and evaluation of a patient-centred illustrated PIL for first-line TB treatment; the assessment of self-efficacy and adherence using modified versions of the HIV Treatment Adherence Self-Efficacy Scale (HIV-ASES) and Morisky 8-item Medicine Adherence Scale (MMAS-8), respectively, and the investigation of the impact of the PIL on patient knowledge and these health-related behaviours. Six focus group discussions (FGDs) conducted in 34 isiXhosa-speaking patients with limited formal education taking long-term treatment explored themes related to information needs, information-seeking practices and awareness of and ability to utilize information sources. Codes were analysed and potential themes and subthemes were identified and refined. The findings of this study reflected a passive, disempowered patient due to both patient-related and systemic healthcare factors. Poor awareness of information sources, lack of health-related knowledge, stigma and lack of awareness of the importance of appropriate medicine-related knowledge contributed to a lack of information-seeking practice. Patients neither asked questions nor were encouraged to do so. All expressed an unmet need for information and a desire for receiving relevant, appropriate, written medicine-related information. Feedback from this phase of the study was used to inform the development of the targeted patientcentred PIL. A double-sided A4 PIL containing information about TB medicines was designed giving careful consideration to content, format and layout features. Twenty five pictograms were designed through a rigorous, iterative design process and were included in the PIL that was evaluated in a randomised control trial (RCT) conducted amongst 120 TB patients attending a high burden TB clinic in South Africa. Interviews were conducted in either isiXhosa or Afrikaans via a trained interpreter. Patients were randomly allocated to either a control (standard care) or an experimental group (standard care plus brief counselling using the PIL). Two interviews were conducted using a prepared questionnaire; one at baseline followed by a 4-week follow-up. Baseline data included demographics, medicine literacy test, health information sources, knowledge of TB medicines, self-reported adherence and self-efficacy. Data collected at the 4-week follow-up interview included TB knowledge, self-reported adherence, self-efficacy, opinion of TB medicine information and interpretation of pictograms. Data were analysed using t-test, correlations, chi-square and ANOVA tests at a 0.05 level of significance. The PIL was successful in improving patient knowledge of the disease, TB medicine-taking, side effects, drug-resistant TB and HIV and TB co-infection. At baseline, there was no significant difference in the overall mean percentage knowledge score between the control and experimental groups (p=0.074). At follow-up, the percentage knowledge score for the experimental group increased significantly from 59.0% to 84.6% (p<0.001) and showed a significantly higher score than the control group (p<0.001), displaying evidence of the impact of the PIL as a counselling tool on patient knowledge. The PIL generated a highly positive response in the experimental group who indicated that they had referred to the leaflet over the last month and that it had played an important role in improving their TB medicine-related knowledge. This was reflected in the experimental group knowledge score of greater than 80% for almost three quarters of the patients whereas only 14% in the control group achieved this score. Patients appreciated the inclusion of pictograms and strongly felt that they helped them to recall and understand the textual PIL content. The study found that patients want side effect information and, interestingly, did not perceive the presentation of side effects in pictorial form to constitute a risk factor for nonadherence. Use of the illustrated PIL (experimental group) resulted in a significant improvement in patient self-efficacy (p=0.002), but showed no effect on self-reported adherence (p=0.563). Neither self-efficacy nor adherence was influenced by gender, age or education. An education effect on knowledge was only observed in the control group at baseline. The newly developed MLT was shown to be a valid and reliable tool and a moderate, positive and significant correlation was noted between the MLT score and baseline TB medicine-related knowledge in both the control and experimental groups. As there is a paucity of studies investigating the influence of take-home written leaflets on TB medicine knowledge and on patient behaviour, this study represents a significant knowledge contribution. It is the first study to report the development and evaluation of a patient-centred PIL to address the dearth of available TB medicine information. The use of targeted user-friendly, illustrated information leaflets can be a valuable counselling aid to improve patient knowledge and self-efficacy, particularly among patients with limited literacy. However, careful consideration of the design and content, with input from the endusers at all stages of the process, will optimise its effectiveness. The proposed framework for the development and implementation of patient-centred health and medicines information in a developing country context presented in this thesis could be used as a theoretical basis for informing the development of effective information materials targeting other disease states. Local patients taking TB medicines identified nurses, WMI and media as their current sources of information but they expressed a strong desire to know more about their treatment. Targeted public health interventions that focus on medicine-taking information and behaviours and encourage patients to adopt a more active, questioning role in health consultations could improve health literacy and empower patients in their medicine-taking practices. , Thesis (PhD) -- Faculty of Pharmacy, Pharmacy, 2015
- Full Text:
- Date Issued: 2015
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