Lived Experiences of People Living with HIV (PLHIV) and on Antiretroviral Therapy in South Africa

Scientific Study, 2016

12 Pages








6.1. Sampling strategy

7.1. Face-to-face interviews

8.1. Informed consent
8.2. Voluntary participation
8.3. Confidentiality

9.1. Data analysis strategies for the study

10.1. Knowledge regarding Antiretroviral treatment
10.2. Attitudes to Antiretroviral treatment
10.3. Experiences of people living with HIV on Antiretroviral treatment

11.1. Introduction
11.2. Sumary of Findings According to the Objectives
11.2.1. Objective 1: Knowledge of People Living with HIV Towards Antiretroviral Treatment
11.2.2. Objective 2: Attitudes of People Living with HIV Regarding Antiretroviral Treatment
11.2.3. Objective 3: Experiences of People Living With HIV Towards Antiretroviral Treatment
11.2.4. Objective 4: Economic Factors that Support People Living with HIV




Despite advances in the prevention strategies the HIV and AIDS pandemic is still one of the most challenging health issues that South Africa has ever had to deal with post apartheid era. The Antiretroviral therapy programme is one of the biggest in the world with more than 3.5 million people accessing HIV treatment and more than 7 million people living with the disease[1]. Furthermore, HIV and AIDS pose a serious threat to the social and economic development of the country. In addition, South Africa has only 0.7% of the world population but is carrying 17% of the HIV and AIDS burden of the world. Adherence to ARV therapy is essential to maintaining long-term health benefits, and avoiding the development of viral resistance [1]

However, there is a need for strong support systems for PLHIV and that systems should be established within the facilities that render comprehensive care management and treatment of PLHIV, including ART[2]. Counselors trained on the ART programme could facilitate the establishment of support groups for people taking ART as their chronic medication and to reinforced community-based structures. Furthermore, People living with HIV and on ART have to be encouraged to identify social support structures in their communities and to disclose their HIV sero-status, as these factors directly impact on the success of an ART programme [2].


Antiretroviral medication regimes for HIV infection are complex and inconvenient to PLHIV. They often produce side-effects and must be taken for long periods [3]. The minimum level of adherence required for ARVs to work efficiently is 95%. Furthermore, important socio-economic predictors of ART adherence include transport and access to health service. It is important for the patients to take seriously the issues of adherence and commit to their treatment for the ART programme to be a success [4]. The failure to adhere to treatment satisfactorily leads to complications or progression of varied diseases [5]. Barriers to adherence included fear of disclosure, forgetfulness, health illiteracy, financial constraints and patients being away from their medications [6].


The aim of this study was to assess the knowledge, attitudes and experiences of people living with HIV and who are on antiretroviral treatment (ART) at a public health clinic in Limpopo, South Africa.


The following objectives were formulated to guide this study. The researcher wanted to:

- Assess the knowledge that people living with HIV have on ART.
- Identify attitudes of people living with HIV towards ART.
- Discover the experiences of people living with HIV and on ART.


The research was conducted using the qualitative enquiry method to collect data. Qualitative researchers exemplify a common belief that this method can provide a deeper understanding of the social phenomenon than would be obtained from purely quantitative data [7]. The goal of the study was to evaluate the knowledge, attitudes and experiences of people living with HIV and on ART in the health facility. Given this goal, a qualitative method approach was called for.

Furthermore, qualitative design explores attitudes, behavior and experiences through such methods as open-ended, face to face interviews and focus groups. In this study, data were collected using interviews conducted with the people living with HIV who are on ART [8]. In addition, qualitative research is any data gathering technique that generates open-ended, narrative data. It tends to be exploratory and descriptive in nature and designed to develop an understanding of individuals in their natural environment [9]. In this study, the researcher interviewed participants to be able to gain an understanding of the concept being studied. Qualitative design was preferred because it gave the participants an opportunity to talk and expand more on the topic and answer open-ended questions [10]. The aim was not to generalize, but to get the understanding of the issues related to knowledge, attitude and experiences of the participants.


Sampling is defined as the selection of some units to represent the entire population from which the units were drawn. There is very little or no assumption that the sample will be representative of the larger population and as a result the findings cannot be generalized [11]. In purposive sampling, the researcher uses his/her own judgments when selecting possible participants for the study [12]. In this study, the researcher used purposive sampling strategy to select the participants.

6.1. Sampling strategy

Efficient sample size in a qualitative study is dependent on the amount, depth and richness of the data the researcher wants to gather [13]. Following the intensity sampling strategy as described by Collins, Onwuegbuzie and Jiao [14], the researcher purposely recruited participants attending the wellness clinic in the facility. The participants for the face-to-face interviews were purposefully chosen as they present themselves at the wellness clinic. On a daily basis, clients present to a dietician consulting room for dietetic services. As they present to the Dietician (researcher), the researcher had an opportunity to request them to participate in the study. Those accepted to be part of the study were interviewed and five participants accepted to participate in the interviews.


Since a qualitative research design was used [15], the researcher followed one data generation strategy. It is discussed in greater detail below. Data collection is defined as the precise and systematic gathering of information relevant to the research purpose, objectives and questions. The researcher was totally involved and able to interact with the participants[9].

7.1. Face-to-face interviews

Interview schedule is defined as a written list of questions, open or closed-ended, prepared for use by an interviewer, in a person to person interaction [16]. In addition, this may be face-to-face or by use of telephone or any media. The researcher used face-to-face interviews as a method of data collection.

The face-to-face interviews were approached as structured conversations based on the on a pre-arranged set of questions[16].The interview sessions were scheduled over five days in the Witpoort Hospital dietician private room in June 2013. All sessions interviews were tape-recorded and notes were taken as a back-up. The researcher commenced each interview by greeting his interviewees and thanking them for taking part in the study. Each interview took about half an hour to an hour. All interviews were conducted in Sepedi, but interviewees were also allowed to express themselves in their language of choice.


The researcher did not encounter any difficulties with accessing his units of observation (which were five people living with HIV who are on ART) as he had been working in this Hospital as a Dietician. In considering the ethical implications of the study, the researcher tried to remain true to the notion of this study as a critical examination of underlying social systems with the purpose of furthering human rights and social justice [17].

In addition, the provision of dietetic services to people living with HIV was regarded as a human right and those rights are being upheld in the interest of social justice. It was not difficult for the researcher to conduct the interviews as an insider of the research site, because he followed all the relevant ethical considerations in conducting social research. The basic considerations when conducting social research involve recognizing and making ethical choices, making principled decisions, ensuring confidentiality and obtaining informed consent from participants whilst maintain research integrity[18]. The basic procedural considerations that guided the data generation and data analysis steps followed in this study are discussed below.

8.1. Informed consent

The researcher provided accurate information to his participants regarding the purpose of the study and what participation entailed.

8.2. Voluntary participation

The participants in this study had the right to voluntary decide whether or not to participate. Participants also had the right to terminate their participation at any time during the study without fear of intimidation or penalties. The researcher informed all the participants about the purpose of the study and participants voluntarily participated.

8.3. Confidentiality

Interviews were conducted in a private room. Confidentiality refers to protecting and not sharing personal information of the participants without their consent [19]. In this study, the collected information, recordings, informed consent forms and other project materials were kept in a locked space at researcher’s office. The information was accessible to the researcher alone. The tape recorder was password protected and only available to researcher. The researcher is planning to dispose of the raw data five years after the degree has been conferred.


The interviews data, which was collected by means of tape recorder, was transcribed. The theoretical framework used in the research guided the conceptualization of the categories and themes in the data analysis.

9.1. Data analysis strategies for the study

In this study, data analysis will start with listening to the tape recordings numerous times. The tape recorded interviews will be transcribed and translated to English. Similar patterns were extracted from the interview transcripts. The data were coded and analyzed manually. Themes were identified. In thematic analysis, the researcher is predominantly interested in the emergence of themes from the collected data


The study that was conducted by Dimatteao and others looked into the model to improve adherence to antiretroviral treatment. The model comprises of the three important clinical actions [20]:

(1) Ensuring that patients have the right information (Knowledge) and know how to adhere – including listening to patients’ concerns, encouraging their participation and partnership in decision-making, building trust and empathy, and enhancing recall;

(2) Helping patients believe in their treatment and become motivated to commit to it – that is, addressing the cognitive, social, cultural normative and contextual factors that affect patients’ beliefs, attitudes and motivation; and

(3) Assisting patients to overcome practical barriers to treatment adherence and develop a workable strategy for long-term disease management – including assessing and enhancing patients’ social support, identifying and treating their depression and helping patients overcome cost-related treatment barriers.[20].

10.1. Knowledge regarding Antiretroviral treatment

The knowledge about HIV and AIDS and the benefits of ART are regarded as crucial for accepting the offer to get tested. Therefore, efforts should be made to intensify the dissemination of HIV and AIDS information and to fight stigma and discrimination in society. Since cultural background plays an important role in the individual response to HIV-related stigma, counseling and health education of patients should be adapted to cultural characteristics [21]. In addition, the study that was conducted in the Eastern Cape and recommended that an inaccuracy of the ART programme should be addressed; this should include improving knowledge translation during training of ART programme staff, ensuring the implementation of established data verification policies and procedures, rethinking the design of the programme to reduce the burden on health facilities and personnel, and standardizing information management procedures amongst the various governmental and non-governmental stakeholders. Knowledge is referred to as the facts known about the treatment, feelings or experiences by a person or group of people, the state of knowing, awareness, consciousness, or familiarity gained by experience or learning specific information about the subject [22].


1. Thomas, E.(2014). South Africa was oncenotorious for apartheid. Emerging Johannesburg. Routledge. P185

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8. Perez, A., Holt, N., Gokiert, R., Chanoine, J.P., Legault, L., Morrison, K., Sharma A. and Ball, G. (2015). Why don't families initiate treatment? A qualitative multicentre study investigating parents' reasons for declining paediatric weight management. Paediatrics & Child Health, 20(4) 179-84

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21. Seeling, S., Mavhunga F. and Thoma, A.B. (2014). Barriers to access to antiretroviral treatment for HIV-positive tuberculosis patients in Windhoek, Namibia. International Journal of Mycobacteriology, 3(4). 268-275.

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Lived Experiences of People Living with HIV (PLHIV) and on Antiretroviral Therapy in South Africa
University of South Africa
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Rodney Mulelu (Author)Marie Matee (Author), 2016, Lived Experiences of People Living with HIV (PLHIV) and on Antiretroviral Therapy in South Africa, Munich, GRIN Verlag,


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