Understanding Factors Influencing Dropout, Return, Retention, and Adherence to ART Care Among PLHIV in South-Eastern Tanzania
This study delves into the factors affecting dropout from and return to care, and adherence to_antiretroviral therapy (ART) among people living with HIV (PLHIV) in South-eastern Tanzania. Researchers conducted in-depth interviews and focus group discussions with PLHIV, their treatment supporters, and healthcare workers to understand these critical aspects of HIV care.
Study Design and Setting
The research employed a phenomenological approach to capture the lived experiences of adult PLHIV who resumed ART after a prolonged absence, as well as perspectives from their supporters and healthcare providers. The study took place in Ifakara Town Council and Mlimba District Council between July and October 2023.
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Figure 1 Map of the recruitment area. The map shows the recruitment area with red crosses indicating health facilities where participants and healthcare workers were recruited for interviews. |
Participants were selected from St. Francis Regional Referral Hospital and Kibaoni District Hospital. Healthcare workers from several health centers in the area were also included in the study.
Sample Size and Selection Criteria
The research team used purposive sampling to identify participants. They planned to interview 13 PLHIV and 9 treatment supporters, but increased the sample sizes to reach saturation—21 PLHIV and 13 treatment supporters respectively. Three focus group discussions, each involving 6-8 healthcare workers, were conducted.
Eligibility criteria for PLHIV included returning to care after missing visits for at least three months and having ceased ART intake for more than 60 days. Treatment supporters eligible for inclusion were relatives who had cared for PLHIV who dropped out and returned. Healthcare workers over a year in HIV care were also included.
Data Collection and Analysis
Discussions focused on reasons for dropping out, factors for returning, reasons for remaining in care, and adherence to treatment. Interviews were conducted in Swahili and audio-recorded. Transcripts underwent thematic analysis using NVivo 12 software to identify key themes.
Key Findings
The median age of PLHIV participants was 40 years, with 52.4% being males and 47.6% females. Most were self-employed in subsistence farming, and 57% had a primary education. Treatment supporters and healthcare workers, predominantly females, echoed similar demographic profiles.
Reasons for Dropout
Improved Health: Many PLHIV felt cured and stopped attending care. Improved health was cited by both PLHIV and their supporters.
“After using ART for some time, my health greatly improved, and I no longer needed to visit the clinic. Because I felt completely healthy and strong, I continued my farming activities without any health problems” (Female PLHIV, 62 years)
Fear of Disclosure: Stigma and discrimination were significant barriers, leading some to hide their HIV status and stop treatment.
“I had to hide my pills in a different container and take them when no one was looking. I felt like I was living two separate lives. I was afraid they would treat me differently if they found out” (Male PLHIV, 22 years)
Traveling: Mobility for work or other obligations often led to missed visits and treatment. Challenges included losing CTC cards and communication issues.
“I got medicine for six months and went to Tunduma for work. But I forgot to bring my CTC card with me. My boss delayed my payment and return. That made me miss my ART care service the entire time” (Male PLHIV, 52 years)
Self-Denial: Many PLHIV struggled with accepting their diagnosis due to embarrassment and guilt, leading them to deny their condition.
“I did not believe I had HIV. I thought it was a testing mistake. I only had sex with one person in my life. How could I get HIV? I refused to attend my treatment visit. I was in denial” (Female PLHIV, 43 years)
Religious Faith: Some PLHIV believed in alternative treatments, such as prayer and sacred oils, leading them to stop ART temporarily.
“I stopped my HIV treatment because a radio pastor said prayer and oil could heal me. I met him in Dar es Salaam and got his blessing. Then, I stopped my clinic visits from October 2021 to June 2023” (Male PLHIV, 55 years)
Factors Influencing Return to Care
Health Deterioration: Health issues often prompted PLHIV to return to care.
“My health decline led me back” (Female PLHIV, 62 years)
Healthcare Worker Tracking: Regular follow-ups by healthcare workers played a crucial role in encouraging patients to return.
“I felt sad and ashamed. When healthcare workers tracked me by calling me and making a home visit, I noticed they acted differently. I realized they truly cared about my well-being” (Female PLHIV, 43 years)
Completion of Work: Many PLHIV resumed care after completing their work obligations.
“I returned to my ART care service, after completing several months managing a rice farming operation as a tractor supervisor, because it was hard to leave the work behind” (Male PLHIV, 32 years)
Social Support: Family encouragement and practical support were vital in helping PLHIV return to care.
“I committed to returning to ART care services and continuing with ART care because my children were encouraging me and they would assist me with food, transportation costs, and other expenses” (Female PLHIV, 62 years)
Factors Affecting Retention and Adherence
Improved Health: Continued good health motivated PLHIV to stay in care.
“He was motivated to stay in care because of the well-being improvement he saw since returning to his ART care after discontinuing treatments” (Male treatment supporter, 42 years)
Healthcare Worker Follow-Ups: Regular check-ins by healthcare workers ensured continued adherence.
“I appreciated how they cared for me. They called me or texted me to remind me of my appointments. Sometimes, I forgot or felt too tired to go, but they encouraged me to keep up with the ART care services” (Female PLHIV, 43 years)
Counseling and Education: Ongoing counseling and health education helped patients understand the importance of staying on treatment.
“I was able to get back on track with my ART care services after receiving counseling from the nurse and doctors. They helped me understand the importance of remaining in ART care services and how it can help me live a healthy life” (Male PLHIV, 59 years)
Trust in Healthcare: Trust in healthcare systems and professionals motivated adherence.
“I trusted the health care services and workers here. They respected and dignified me. They explained my condition and medication. They supported me through challenges and difficulties. That’s why I returned to the clinic and followed their advice” (Male PLHIV, 59 years)
Family Support: Family encouragement and practical assistance played a critical role in patients’ adherence to ART.
“My grandmother reminded me to take my medications, and in some cases, she even went with me to the clinic. She was also helping me cope with the stigma and the side effects. She made me feel like I wasn’t alone” (Male PLHIV, 21 years)
Long refilling ART: Extended ART medication refills reduced the frequency of clinic visits and transportation costs, motivating adherence.
“I wanted to qualify for the long refilling group, so I followed my ART treatment faithfully. That allowed me to work on my farm without any hassle as well as reduce the number of clinical visits used to seek ARVS drugs” (Male PLHIV, 32 years)
Discussion and Implications
The study highlights the importance of long refilling strategies and support systems in improving adherence and retention in ART care. Multi-month dispensing prescriptions reduce clinical visits, transportation costs, and stigma, facilitating better adherence to ART.
Limitations
The study had limitations, including limited generalizability, self-reported data, and exclusion of those who never returned to care. However, it provides valuable insights into the multifaceted factors influencing ART adherence and retention.
Conclusion
Understanding the factors that lead to dropout, return, retention, and adherence among PLHIV is crucial for optimizing HIV care services. Tailored interventions focusing on stigma reduction, family support, and long-term treatment strategies can improve outcomes for PLHIV.
