A qualitative exploration of the psychosocial factors affecting antiretroviral therapy adherence among HIV infected young adults in Eastern Uganda
Department of Nursing, Faculty of Health Sciences Busitema University, P. O Box 1460, Mbale Uganda
Department of Community and Public Health, Faculty of Health Sciences, Busitema University, P.O Box 1460, Mbale, Uganda
Department of Pharmacology and Toxicology, School of Pharmacy, Kampala International University, P.O Box, 20000, Kampala, Uganda
Department of Physiology, School of Health Sciences, Soroti University, P.O Box, 211, Soroti Uganda
Department of Pharmacology and therapeutics, Faculty of Health Sciences, Busitema University, P.O Box 1460, Mbale, Uganda
*Corresponding Author: Kenedy Kiyimba (kiyimbakennedy@gmail.com, kiyimbakennedy@fhs.busitema.ac.ug, +256702807210)ABSTRACT
Background
The use of anti-retroviral therapy (ART) in management and prevention of HIV/AIDS epidemic is a globally accepted strategy. In Uganda, despite the efforts to increase uptake of ART, adherence remains a huge challenge. This study, therefore, was conducted to explore psychosocial factors which influenced non-adherence to ART among young adults in Eastern Uganda.
Methods
This was an exploratory qualitative study conducted at the ART clinic of Mbale Regional Referral Hospital. A total of 35 in-depth interviews with young adults who had defaulted from taking ART drugs were conducted. Also, five key-informant interviews were conducted among the healthcare workers in the hospital. Thematic analysis approach was followed to analyze the data using NVIVO software (version 11).
Results
Non-adherence to ART was perceived to result from poor social support, poor coping mechanisms, unpredictable and busy work schedules, poverty, incompatible religious beliefs and practices. The poor social support factors included poor caregiver support, non-disclosure of HIV status, stigma and discrimination while factors linked to poor coping mechanisms included alcohol and substance abuse, psychosocial stress, depression, forgetfulness and feelings of self-hatred. Poverty limits access to treatment and basic needs including transportation to health facilities. Long waiting time at the ART clinic was the healthcare system factor which was thought to cause non-adherence among young adults.
Conclusion
Non-adherence to ART at Mbale Regional Referral Hospital in Eastern Uganda is attributed to various psychosocial factors such as stigma and discrimination, mental health problems, work-related problems and low socio-economic status, religious beliefs and poor knowledge, long waiting time in ART clinic and poor family support. Psychosocial counselling should therefore target the perceived causes of ART non-adherence so as to improve the adherence /compliance to ART.
Article notes
Competing Interest Statement
The authors have declared no competing interest.
Funding Statement
The study did not receive any funding
1.0Background
HIV/AIDS is still an epidemic with devastating consequences to humanity worldwide. Globally, an estimated 38.4 million people were living with Human Immune Virus (HIV) in 2021 of which 54% (20.6 million) of the population were in Southern and Eastern Africa [1]. Uganda is one the countries in sub-Saharan Africa with the high burden of HIV infection [2]. In 2021, the prevalence rate of HIV among adults aged 18-49 in Uganda was 5.2% which translated to about 1.3 million people [2]. Uganda is a predominately young population with significant public health implications given that the risk of new infections is highest among the young adults [3]. In Uganda, 37% of all the new HIV infections were among the young adults aged 15-24 years in 2020 [4].
The United Nations AIDS (UNAIDS) has set an ambitious 95-95-95 target to eliminate HIV/AIDS epidemic by 2030 [5]. The 95-95-95 strategy is where 95% of the population are aware of their HIV status, 95% of HIV positive clients are on antiretroviral treatment (ART), and subsequently 95% of HIV positive clients on ART are able to achieve HIV viral load suppression [5]. In Uganda, in 2020, 89% of people living with HIV were aware of their HIV status, 82% of people living with HIV were on ART, and 78% of people living with HIV had viral suppressed loads [2]. Consequently, Uganda is far from meeting the 95-95-95 target [2].
Optimal elimination of HIV transmission and viral load suppression requires strict adherence to ART [6]. The risk of treatment failure is likely to occur following failure to adhere to the lifelong ART [7-9]. Young adults are more likely than adults to miss taking ART drugs [6]. A previous study among youths showed that 37% of the youths living with HIV refused or missed taking ARVs for a period of one month in Rwanda [10], while another study in Uganda reported that 90% of the youths had more than 95% adherence in taking ART drugs [11]. Poor adherence to ART was attributed to poverty, stigma, non-disclosure, discrimination, pill burden, fatigue, depression and side effects [11-17]. Short waiting time, counselling, supportive healthcare workers, peer support and provision of food and transport was found to facilitate good adherence practices among the youth [11]. Previous studies explored adherence in the context of married couples [18], while a few studies among the young adults were quantitative in nature [11]. In this study, a qualitative research design was used so as to further explore and understand the psychosocial factors which hindered adherence to ART among young adults living with HIV.
2.0Methods and Materials
2.1Study design and setting
This study used a phenomenological qualitative study design to explore psychosocial factors which influenced non-adherence to ART among young adults at the ART clinic of Mbale Regional Referral Hospital (MRRH). MRRH is the biggest hospital in Eastern Uganda with a 400-bed capacity serving over 16 districts in Eastern Uganda. The ART clinic at the hospital offers a wide range of services which include health education, HIV counseling and testing, ART dispensing, laboratory services, clinical assessment, ART adherence counseling and psychosocial support.
2.2Study Participants
HIV positive young adults from age 19-35 years who were receiving ART in the hospital and were non-adherent to ART were recruited in the study. Participants who defaulted on ART with adherence of less than 90% in the past three months were selected and were considered to be non-adherent to ART.
The study also included ART clinic staff purposively selected since they worked so closely with the young adults. These clinic personnel included a clinical officer, a nurse who was the in-charge of the ART clinic, a social worker and two primary health care counselors. All the participant Identifiers were not disclosed nor known to anyone outside the research group.
2.3Sample size calculation
The sample size for this study was based on the principle of data saturation when no new information was collected from the interview[19]. In this study, data saturation was reached when a total of 35 in-depth interviews and five key informant interviews were conducted.
2.4Data collection
In-depth interviews (IDIs) were used to collect data from study participants. The interviews were conducted in Luganda, Lugishu and English. The IDIs were conducted by ET, a nursing student in the final year of study and a native speaker of Luganda. The interviews were conducted in a quiet room with adequate privacy. The IDIs with the participants lasted a duration of about 30-45 minutes. A topic guide with open-ended questions were used during the IDIs. The questions asked included what challenges hindered these clients from adhering well to the recommended lifestyle of people living with HIV while at school, home, work places, health facility, any illicit drugs or alcohol use by these clients, feelings of self-hatred, homicidal and suicidal ideas. In addition, social demographic information including age, sex, marital status, level of education, religion, and time the client has spent on ART were collected. Key informant interviews were conducted to understand the perceived psychosocial factors for ART non-adherence among young adults from the lens of experts involved in ART. Key informant interviews, lasted a duration of about 30-45 minutes, were conducted in English using an interviewer guide. The interviewer guided contained questions such as what challenges hinder these clients from adhering well to the recommended lifestyle for people living with HIV while at school, home, work places, health facility, any illicit drugs or alcohol use by these clients, report feelings of self-hatred, homicidal, suicidal ideas or any other mental illnesses. Method triangulation, through use of IDIs and key informant interviews, ensured rigor of the data collected in the study. Audio recording of the interviews was done.
2.5Data analysis
The audio recording were transcribed word to word from Luganda and Lugishu to English by a trained native Luganda speaker (ET and EK). NVIVO version 11 plus was used in the data analysis and processing [20]. Brauna and Clarke thematic analyses was used to analyze the data [21]. The transcript was read for several times to get familiar with the data [21]. A multidisciplinary team of researchers including a social worker, nurse, counsellor and a pharmacologists) were involved in data analysis. The codes generated were discussed by the team to ensure that the codes were grounded and consistent with the data. The interviews were then read by the social scientist (EK) who randomly selected and independently coded three interviews [21]. Codes, sub-themes, and themes were used to describe the data [21].
2.6.Ethical clearance
Ethical approval from Mbale Regional Referral Hospital Ethics and Research Committee (reference number: MRRH-2021-82) was obtained. Informed consent was obtained from individual participants, while confidentiality and privacy were strictly followed; the participant Identifiers(IDs) were not known to anyone outside the research group. The study was conducted during COVID-19 pandemic, and as such, compliance to standard operating procedures were strictly maintained during data collection.
3.0Results
3.1Study participant demographics
A total of thirty-five young adults living with HIV were enrolled in the study. The participants included those who had an adherence of less than 90% in the period of the last three months (table 1). The work experience of key-informants ranged from two to eight years.
4.0DISCUSSION
This study was conducted to explore the psychosocial factors that hindered adherence ART among HIV positive young adults. Non-adherence to ART was perceived to result from stigma and discrimination, mental health problems, work-related problems and low socio-economic status, religious beliefs and poor knowledge, healthcare system factors and poor family support. Addressing these psychosocial factors hindering adherence to ART would promote increased compliance to treatment and hence reduced morbidity and mortality form HIV/AIDS. Stigma and discrimination were described to affect all young adults on care and it was among the most common reasons of failure to swallow the pills while at school, work places, and homes. Stigma is due to perceived unbearable burden for taking medication for life which lessens the self-confidence of the clients leading to non-adherence [11, 15]. Stigma in the healthcare facilities manifests in form of internalized fear of being seen in ART clinic, impatience to wait, and rush in picking the drugs [15]. A study done in Northern Uganda among young adults also reported stigma as the main cause of non-adherence to ART [11]. Similar findings have been reported in Myanmar, where enacted stigma and internalized stigma were associated with worse ART adherence [13]. Stigma and discrimination restrict the freedom of HIV positive in taking their ART pills in the presence of other people resulting in delaying, poor timing and non-adherence to ART. Stigma remains a stumbling block to good adherence and its impact is not only reflected on the recipients of care but also on their care takers, communities, and the entire health care system [15]. The consequent poor counselling and inadequate holistic health assessment of the client worsens adherence practices but may also contribute to ART failure [15].
Disclosure of HIV status has remarkable benefits in promoting drug adherence among other social benefits[22, 23]. In our study, clients who had not disclosed their HIV status found it difficult to ask permission from their superiors to allow them to go and pick their medication from the health facility. Missed appointments, poor timing and skipping to take their medication was noted among students who had not disclosed their HIV status as they were unable to seek permission, special consideration in terms of meals, and receiving adequate social support from the school manned clinic. Similar findings were cited in Ghana where non-disclosure led to low adherence on ART [12]. Non-adherence was significantly more common among clients who had not disclosed their HIV status to their partners, a finding which was consistent with study findings [12]. Therefore, clients who have not disclosed their HIV status should be counselled on the role of disclosure in improve adherence to ART.
Consistent with previous studies [14, 16, 24], failure to adhere to ART was attributed to mental health problems including stress, depression, feelings of self-harm, poor coping mechanisms and use of illicit drugs. In Malawi, young adults who had depressive symptoms were significantly more likely to default on their ART medication [25]. Like in previous studies [14, 24], newly diagnosed HIV positive clients were more likely to resort to the use of alcohol and other illicit drugs to cope with the associated psychosocial stress. Alcohol and substance intake affects social cognition and lowers social inhibition of the clients leading to forgetfulness, irrational behaviors and decisions which consequently comprise the ability of HIV positive clients to adhere to their medications [14]. Promoting adherence requires strong psychosocial counselling services to screen, identify, and appropriately manage clients who are likely to start using drugs and as well clients who are already abusing drugs.
Previous studies have indicated that long waiting time in ART clinics was significantly associated with poor ART drug adherence [26, 27]. A study revealed non-adherence to ART was attributed to long waiting time in 24% of clients [27]. Consistent with previous studies [28], long waiting times and high volume of clients in ART clinics meant that some clients did not honor their appointments, while some clients spent so much time in the clinic, and chose to leave the clinic without receiving their drugs. The high volume of patients relative to the few healthcare workers compromises on the quality of client-healthcare worker interaction, privacy, poor quality of care, and failure of the healthcare workers to identify issues of ART adherence among clients [28]. Measures should be developed to reduce long waiting times in ART clinics so as to reduce issues of non-adherence to medications and consequent treatment failure
Consistent with findings from previous studies[28, 29], poverty, and low-socio economic status contributed to the ART non adherence among HIV young adults. In a scoping review of the factors contributing to ART adherence, logistical and financial support to HIV positive clients were found to facilitate adherence to ART medication [30], which also supports our findings. Non-adherence from lack of money was attributed to failure of the clients to afford basic needs such as food and transport fares to cater for additional demands of taking ART medications. COVID-19 restrictions were attributed to cause poor ART drug adherence related to financial insecurity from closure of business, non-paid leave, laying off workers, and doubling of transport fares. Financial hardships together with poor quality of meals at schools meant that while in school students were not able to buy additional food to supplement their feeding and consequently cope with the demands of taking ART medications. This underscores a need for schools to provide special support to HIV positive clients in school through provision of special meals in order to promote drug adherence.
Some religious beliefs were perceived to be associated with poor adherence to ART medication. Some Muslim clients were implored to stop taking their medication during Ramadan, while some pastors gave false hope to their followers that God would heal them even when they do not take medication. The findings of our study were in agreement with a study findings [31, 32] which cited poor ART adherence was related beliefs in faith healing, alternative traditional medication, and perceptions that HIV was caused by witchcraft. However, this was contrary to the findings in Ghana, where religious beliefs empowered the clients to ignore stigma, become resilient and motivated to take their medications because of their beliefs that God approved the use of ART thus promoting good adherence [33].
6.0Conclusion
Poor timing of taking medication, missed appointments to pick medications, and defaulting in taking ART medication was perceived to result from stigma and discrimination, mental health problems, work-related problems and low socio-economic status, religious beliefs and poor knowledge, long waiting time in ART clinic and poor family support. Mental health problems including stress, alcohol and substance use, and depression were perceived to negatively affect drug adherence. There is need for continuous counselling of young adults living by the Healthcare providers on, mental health, ART adherence, healthy lifestyle, and prompt management of ART side-effects.
Data Availability
The datasets used and/or analyzed during the current study is available at https://doi.org/10.5061/dryad.ns1rn8pxp.
Abbreviations
- AIDS
- Acquired Immunodeficiency Syndrome
- ARV
- Antiretroviral drugs
- ART
- Antiretroviral therapy
- HIV
- Human immunodeficiency Virus
- MRRH
- Mbale Regional Referral Hospital
- HMIS
- Health Management Information System
- IDI
- in-depth interviewees
- KI
- key informants
Declarations
The authors have no conflict interest to declare
Ethics approval and consent to participate
Ethical approval was sought from the Research and Ethics committee of Mbale Regional Referral Hospital. Each participant was made aware that participation is voluntary and that they can opt out of the study at any stage without any penalty. The information shared with the investigator was kept confidential and private by restricting any data access. To maintain privacy, names and any other individual identification were not recorded but unique in-depth interviewee identification numbers and key informant numbers were used in participant identification. Informed consent was sought before data collection from a participant and participants were asked to append their signatures on the consent form. All participants were well educated about the objectives of the study, any risks and benefits.
Consent for publication
Not applicable
Availability of data and materials
The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.
Competing interests
The authors declare that they have no competing interests
Funding
The study did not receive any funding
Acknowledgements
We are grateful to Mbale Regional Referral Hospital, the key informants and the study participants for their valuable input in the study