Table 5:

Reasons for disengaging from HIV care among people living with HIV in rural South Africa

Mobility	• “I went to look for a job in Durban, and I forgot to ask for the transfer letter from the clinic. I did not find a job and then did not have money to come back to the clinic.” • “I had not fully accepted my status. I worked far from home and had no money to come back for my appointments. I tried to get a transfer but it took time and I lost my job during that time making it more difficult.” • “I work for a contract company and my working days did not allow me to travel and get my ART. On the days I was off I had no money to come.” • “I worked in Joburg, …. I lost my job and had no financial support. I had however requested a transfer but I did not get one at the clinic to be able to get my pills in Joburg.” • “I was working away from home and I requested the caregiver to get my pills for me. The nurses refused to give her my treatment. My family is poor and I have 4 children. The money I had went into getting food for my children. I could not travel to the clinic. I got frustrated with the nurses at clinic and stopped going completely because they refused to understand the situation.” • “I had a family emergency and I had to go to Durban. My grandmother was raped and I went to go look after her. I ended up staying 4 months there and I did not carry my blue book.”
Lack of money to come to the clinic	• “I have no work, not even enough for food and I had no money to go to the clinic, so taking my medication was too much for me.” • “I had no transport money to go and fetch my medicine at the clinic, the person who supported me financially passed away.”
Lack of social support	• I was not treated well in Joburg by my son’s father. I ended up having no support or a place to stay. • When I found out about my HIV status I told my husband and he was in denial about the matter and said I should not take ARVs. I did not take them because he was angry when I did. I tried to hide them from him but it was difficult because we live together.
HIV Stigma	• “I was still in denial and afraid to be seen going to clinic to take ARV’s.” • “I was scared to go to the clinic because I might come across people who know me. I was ashamed of having HIV.” • “I got a job and I was afraid to tell my manager that I’m taking ARVs. I was scared of losing my job.” • “I was afraid that my family members would know that I’m HIV-positive when they see me taking the medication.” • “When I am at school, the other kids have a habit of opening my backpack and they see my blue book and sometimes my pills and they make fun of me. I then felt embarrassed and did not bring my blue book to my [clinic] appointment and could not collect my pills. The clinic is closed during the weekends so I cannot collect them on a day that I do not have school. I stopped collecting them because the other kids know the ARV container. I felt embarrassed.” • “My husband said he tested negative but refused to show me the results. When I insisted on seeing the results he said he tore them up. Our child fell ill and was tested again in Joburg and when he saw the results for our child (positive) he agreed for the child to take them but not me.”
Adverse effects of medication	• “I felt very sick and I also had bad dreams.” • “HIV medicines made me very hungry, and I did not have money to buy to food.”
Did not want to take medication anymore	• “I just got tired of taking my medication and stopped collecting it since last year.” • “I have been taking ARVs for far too long so I thought taking a break on my medication. I was busy sometimes so I would forget taking my pills. When I feel depressed I don’t feel like doing anything even drinking my medicine.”
Participant did not feel sick anymore	• “I felt that I was not sick anymore, therefore I saw no need to continue with medication.”
Other	• “I was confused because my wife tested negative several times and we don’t condomise every time we have sex so I didn’t know if I was positive.” • “I was incarcerated.” • “I was addicted to alcohol. I felt it was not important to take my medication.” • “I started using other traditional medicines that I was told they can cure HIV completely.” • “I cannot see properly and find it hard to travel to the clinic. I usually ask neighbors to get the medication for me if they go to the clinic. At times there is no one going or they forget.” • “I was writing my grade 12 exams and the mobile clinic only comes on Tuesdays.”