Development and validation of a health literacy measure for limited literacy public sector patients in South Africa
- Authors: Marimwe, Chipiwa
- Date: 2018
- Subjects: Health literacy -- South Africa , Patient education -- South Africa , Communication in medicine -- South Africa , Health literacy -- Social aspects -- South Africa , Poor -- Medical care -- South Africa , Analysis of variance , Multidimensional Screener of Functional Health Literacy (MSFHL)
- Language: English
- Type: text , Thesis , Doctoral , PhD
- Identifier: http://hdl.handle.net/10962/62661 , vital:28227
- Description: The growing complexity of healthcare demands greater patient involvement and skills to navigate this complex system. It has therefore become increasingly important to identify individuals with inadequate health literacy, by using efficient, short and reliable measures for doing so. Most research on the development and validation of health literacy tests has been conducted in high-income countries, with very little reported from low-and middle-income countries (LMICs). Existing health literacy measures have come under scrutiny for their lack of cultural sensitivity, bias towards certain population groups and failure to acknowledge health literacy as a multidimensional concept. These measures usually have limited application in LMICs due to the significantly different structuring of healthcare systems, they overlook the extreme discrepancies in educational levels, and rely too heavily on the ability to read health information. No health literacy data for South Africa are available, and only a few health literacy-based research papers have been published in this country. The aim of the study was to develop and validate a health literacy measure that is contextually and culturally appropriate to measure health literacy in limited literacy public sector patients in South Africa. An Item Bank of 30 questions was developed with the input of a diverse expert consultant panel, and included skills-based and self-reported questions which ensured cultural, contextual and educational level appropriateness. The Information and Support for Health Actions Questionnaire (ISHA-Q) is a health literacy measure developed to assess health literacy for LMICs which includes 14 core scales. These were useful in ensuring coverage of a range of health literacy constructs within the Item Bank. The 30 questions were then allocated to one of three health literacy domains: Procedural knowledge, Factual knowledge and Access to healthcare, health services and social support. Ethical approval for the study was obtained. The questions were translated into isiXhosa and underwent pilot testing. Following pilot testing, 120 isiXhosa first-language speakers, at least 18 years old, who attended public sector facilities and had a maximum 12 years of education were recruited from a primary healthcare clinic in Grahamstown. An interpreter was trained and he participated in all interviews. A questionnaire was used to collect data on the 30-question Item Bank. The Multidimensional Screener of Functional Health Literacy (MSFHL) was used as the primary comparator.The second phase of the study involved the refinement of the 30 questions in the Item Bank, which involved a multi-stage process. Data were analysed statistically using t-test, correlations, chi-square and ANOVA tests at a 5% level of significance, in order to identify problematic questions. Item Response Theory was used to ascertain difficulty and discriminatory ability of the questions. Each question was further subjected to in-depth interrogation by a panel of healthcare professionals to ensure that questions were supported by the conceptual framework and the definitions of health literacy adopted for this study. The number of questions was reduced from 30 to 12, and formed the new Health Literacy Test - Limited Literacy (HELT-LL). To validate the HELT-LL, 210 patients with the same inclusion criteria as previously noted, were recruited from four primary healthcare clinics in the Eastern Cape Province. Individual interviews were conducted with the assistance of the interpreter to collect sociodemographic data as well as data from the HELT-LL, the primary comparator (MSFHL), and a secondary comparator which was a South African modified version of the Newest Vital Sign (NVS-SA). The HELT-LL was re-administered to 40 patients in a follow-up interview two weeks later. The HELT-LL categorised only 17.6% of the patients as having adequate health literacy, just over a third with inadequate health literacy, and the majority with marginal health literacy. Questions in the cognitively demanding Procedural knowledge domain were the most poorly answered, with a mean score of 48.6±24.9%. Patients had great difficulty performing the basic numeric tasks in this domain. The overall mean score for the HELT-LL was 52.8±18.4%, compared with the more cognitively demanding NVS-SA with a mean of 28.6±21.1%, and clearly illustrated the impact of the strategy to include in the HELT-LL a variety of questions with differing cognitive load. The MSFHL, which is based on demographic characteristics and perceived difficulties with reading and writing, had an overall mean score of 44.4±26.2%. Demographic characteristics including age, education and English literacy, were found to be good predictors of limited health literacy, with significant correlations being found between these variables and the mean HELT-LL score. An acceptable value for Cronbach’s alpha, excellent test-retest reliability and excellent concurrent validity show that the HELT-LL is a valid and reliable measure of health literacy in our target population. As there is a paucity of health literacy research emanating from developing countries, this study presents a significant contribution to literature. It is the first study to report the development and validation of a health literacy measure to address the dearth of available health literacy measures applicable for South Africa. If implemented for use in clinical settings and for research purposes, it could provide valuable South African health literacy data which could inform the development of interventions focusing on improving health literacy and health outcomes.
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Illustrated medicines information for HIV/AIDS patients: influence on adherence,self-efficacy and health outcomes
- Authors: Barford, Kirsty-Lee
- Date: 2012
- Subjects: AIDS (Disease) -- Treatment -- South Africa , HIV infections -- Treatment -- South Africa , AIDS (Disease) -- Patients -- South Africa , HIV-positive persons -- South Africa , AIDS (Disease) -- Study and teaching -- South Africa , Antiretroviral agents -- South Africa , Communication in medicine -- South Africa , Communication in public health -- South Africa
- Language: English
- Type: Thesis , Masters , MPharm
- Identifier: vital:3863 , http://hdl.handle.net/10962/d1015678
- Description: South Africa has an estimated 920 000 patients on antiretrovirals (ARVs), the largest number of patients in any country. ARV therapy demands adherence levels in excess of 95% to avoid development of drug resistance, but adherence to ARV therapy is estimated to be only between 50% and 70%. Poor medication adherence is acknowledged as a major public health problem, reducing the effectiveness of therapy and promoting resistance to ARVs. More than two thirds of the South African population have marginal reading skills and this significantly influences a patient’s ability to read and understand health-related information. Patient education materials tailored for the South African population could be a useful aid in facilitating communication with patients and perhaps impact positively on their medicine-taking behaviour. This behaviour is influenced by patient knowledge, beliefs, attitudes and expectations and includes self-management, self-efficacy and adherence. Self-efficacy, which refers to patient confidence in the ability to self-manage medicine taking, is a key factor influencing adherence. This study aimed to develop illustrated patient information leaflets (PILs) and medicine labels for all first-line ARV regimens used in the public health sector in South Africa and, using a randomised control study design, to investigate the impact of these illustrated information materials on knowledge, medication-taking behaviours and health outcomes in HIV/AIDS patients taking ARVs. To achieve this aim, the objectives were to assess HIV/AIDS and ARV-related knowledge, as well as self-efficacy and adherence to ARV therapy; to assess the influence of demographic variables on knowledge, adherence and self-efficacy; to assess the influence of the information materials on knowledge, self-efficacy and adherence and to assess the association of knowledge with health outcomes. Medicine labels and PILs, both English and isiXhosa, were developed for ARV regimens 1a, 1b, 1c and 1d. The 8-item Morisky Medication Adherence Scale (MMAS-8) and HIV Treatment Adherence Self Efficacy Scale (HIV-ASES) instruments for measuring respectively adherence and self-efficacy, were modified to optimize clarity, simplicity and cultural acceptability and were translated into isiXhosa using a multi-stage translation-back translation. The questions and the rating scales, for both the MMAS and HIV-ASES, underwent preliminary qualitative evaluation in focus group discussions. Patients were recruited from local Grahamstown clinics. A pilot study to evaluate applicability of the instruments was conducted in 16 isiXhosa AIDS patients on ARVs and the results from this study informed further modifications to the instruments. One hundred and seventeen patients were recruited for the randomised control trial and were randomly allocated to either control group (who received standard care) or experimental group (who received standard care as well as pictogram medicine labels and the illustrated PIL). Interviews were conducted at baseline and at one, three and six months. Data were analysed statistically using the t-test, chi-squared test and ANOVA (Analysis of Variance) at a 5% level of significance. Correlations were determined using Pearson and Spearman rho correlations. Approval was obtained from Rhodes University Ethical Standards Committee, Settlers Hospital Ethics Committee and the Eastern Cape Department of Health. The results of this research showed that illustrated PILs and medicine labels enhanced understanding of HIV/AIDS and ARV information, resulting in a mean overall knowledge score in the experimental group of 96%, which was significantly higher than the 75% measured in the control group. Variable knowledge scores were measured in three areas: baseline knowledge of general HIV/AIDS-related information was good at 87%, whereas knowledge scores relating to ARV-related information (60%) and side-effects (52%) were lower. These scores improved significantly in the experimental group over the 4 interviews during the 6 month trial duration, whereas in the control group, they fluctuated only slightly around the original baseline score. There was no significant influence of gender on knowledge score, whereas health literacy, education level and age tested (at one and three months) had a significant influence on knowledge. Self-efficacy and adherence results were high, indicating that the patients have confidence in their ability to adhere to the ARV therapy and to practice optimal self-care. Age, gender and education, in most cases, significantly influenced self-efficacy, but were found to have no effect on adherence. The CD4 count improved over the trial duration which may have been influenced by a number of factors, including better knowledge of ARVs and improved adherence. No significant parametric correlation was found between knowledge score and change in CD4 count, however, Spearman's rho showed significance (rs=0.498; p=0.022). Both patients and healthcare providers were highly enthusiastic about the illustrated labels and PILs, and indicated their desire for such materials to be routinely available to public sector HIV/AIDS patients. The isiXhosa version of the PIL was preferred by all the patients. These simple, easy-to-read leaflets and illustrated medication labels were shown to increase understanding and knowledge of ARVs and HIV/AIDS in low-literate patients, and their availability in the first-language of the patients was central to making them a highly useful information source.
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