Date Published: February 13, 2019
Author(s): Delarise M. Mulqueeny, Myra Taylor.
Patients play a major role in the success of any antiretroviral treatment (ART) programme. Hence, their needs should be articulated on a regular basis for interventional processes to promote adherence, retention and quality care.
This study investigated whether patients’ needs were being met, described which needs were met, which were not and how such needs could be met.
The study took place at four ART clinics in eThekwini district public hospitals.
This study formed part of a larger study that utilised a sequential mixed-methods design. However, only the qualitative component is documented herein. Twelve HIV-infected patients engaged in in-depth interviews (three patients from each of the four hospitals). A socio-ecological framework divided responses into four categories, namely, the individual, interpersonal, institutional and policy. Each category presented (1) patients’ needs that are being met, (2) needs that are not being met, (3) recommendations on how they can be met and (4) researchers’ observations.
All 12 patients reported that all their needs were not being met. They further shared their met needs, unmet needs and made recommendations for meeting their unmet needs. These needs varied per antiretroviral clinic because of unique processes at each institution.
To adequately address the needs of HIV-infected patients, it is imperative for all stakeholders involved in the public ART programme to gain an understanding of what constitutes ‘patients’ needs’. The results reflect patients’ willingness to be involved in their care, treatment and interventional strategies to adequately meet their needs.
The South African public antiretroviral treatment (ART) programme was initiated in 2003 and has been in operation for over 10 years.1 It has been hailed as one of the largest globally, with success in reducing morbidity and mortality rates.2,3,4,5
To achieve rich data on how patients’ needs are being met, this article addresses the qualitative component of a sequential mixed-methods study that explored HIV-positive patients’ experiences of the ART programme at ARV clinics based in four public hospitals. In the larger study, 400 questionnaires were collected and analysed prior to the qualitative data collection taking place. Therefore, the qualitative data assisted in explaining the quantitative results. The qualitative sample comprised 12 ART literate patients who were purposively recruited between August 2015 and November 2015 when they accessed treatment. Six males and six females, three patients from each of the four primary ethnic categories and three patients from each of the four ARV study sites, participated in the in-depth interviews (IDIs). This process ensured retrievable, comprehensive data aimed at maximising the diversity and uniqueness of all sites and patients’ needs. It also adequately interrogated the study aim and ensured data saturation was reached, which promoted content validity. All the participants were HIV-positive patients who received ART from one of the sites for 1 year and more and were 18 years and above. The exclusion criteria related to eligible patients who were too ill to participate in the study. The IDIs and non-participatory observation were the data collection tools. All the participants declared they were proficient in English. Two research assistants who were proficient in English, Afrikaans and Zulu sat in on the IDIs. No refusals were recorded as all 12 invited patients willingly participated after the study process, confidentiality and voluntary consent were explained to them. The first author led the interviews utilising an interview schedule with mostly open-ended questions after informed consent forms were distributed, read and signed by all 12 participants. The interviews continued until repetitive data emerged, which is referred to as ‘data saturation’.22
A socio-ecological framework was utilised whereby participants’ responses were divided into the individual, interpersonal, institutional and policy categories. Each category presents: (1) patients’ needs met, (2) unmet needs, (3) patients’ recommendations on how their needs can be met and (4) non-participatory observations. Varying responses for similar processes were dependent on the ARV clinic that participants attended.
‘Patients’ needs’ is a complex phenomenon as it relies on the individual’s subjective reality because what one patient considers an important need, another patient may not. The discussion incorporates the findings, the varying processes and procedures of the four ARV clinics and integrates the findings according to the four categories of the socio-ecological model.
Patients’ needs should be given primary attention. Further studies should be conducted on a regular basis to be cognisant that patients’ needs and satisfaction with services are contextual and vary with time and can be catalysts for change and improvement.
As the study was conducted within the eThekwini district an opportunity for larger studies in other districts and geographical locations exists, as such studies could yield richer data regarding patients’ needs. The research team members’ disclosure of their HIV-positive status could be perceived as bias. A sample of 12 could be considered a limitation. The CCMDD, Ideal Clinic and UTT had not been implemented at the four sites during the data collection process; hence data collected after their implementation may have yielded different results. Patients’ negative experiences, unmet needs and recommendations might not be fully addressed and/or resolved at the site and might need to be referred to provincial and national gatekeepers.
The study results indicate that participants reported that all their needs are not being comprehensively met and highlights the successes and challenges of the current ART programme from the very people the programme aims to serve, its patients. It further provides recommendations directly from the programme’s clients to improve the programme. This study exposed patients’ willingness to be included in their healthcare to improve their HIV journey and ensure a patient-centred programme. As patients are ambassadors of the ART programme an understanding of their needs is vital to future planning, interventions and service delivery. The study also highlights the innovative role that other government departments, CBOs and non-governmental organisations (NGOs) can make in assisting the Department of Health to meet patients’ needs.