Table 3 The consolidated list of 64 statements

Poor documentation

Poor filing means that patient files can get lost when patients on ART are being transferred

The patient has died but their death is not reported

Patients have little social support in the villages due to lack of counsellors, support groups and community-based organizations

The patient has moved away to another clinic without being properly transferred

Patient visits are not being recorded accurately

Resources needed for effective tracing

Tracing starts too late because of the way a ‘defaulter’ is defined (e.g., missing an appointment by 2 months or more)

The HSAs have difficulty locating patients because they do not live in their catchment areas and therefore do not know the villages where people come from

Patients on ART can’t be found if the HSAs do not have their proper address and/or their locator forms

They live in areas that are difficult to reach so that the HSAs have difficulty tracing them

Health workers have difficulty locating patients without working phones or phone numbers

There is no fuel or dedicated transport for tracing

Social and financial support issues

Being too sick to come to the clinic

The distance to the clinic is too far from some patients on ART

The guardians of the patient refuse to go the hospital to collect their ARVs from them

Patients on ART can’t afford transport means to come to the clinic because they face poverty

A lack of support for ART patients especially when they are orphans

Patients on ARV medicines may also have to deal with other diseases such as chronic illness

Patients on ARV medicines feel hungry but they can’t afford to buy extra food

They are attending to another sick relative (e.g., child)

Health worker attitudes

Patients are on ART feel that there is a lack of confidentiality on behalf of the health workers (e.g., drugs given without privacy)

Patients on ART get disappointed when they are not put on a different ART regimen to help manage their side effects

Patients are not properly educated on ART because of little one-on-one counselling with the health workers

Patients on ART do not like the way they are treated by health workers

Patients feel shy to come to the health centre because there is limited space and no privacy

Patients on ART get frustrated because it takes too long before they are seen at the hospital

Anxiety about going back to the clinic after missing many appointments

To hide from follow-up, patients change their names and identities

Health worker issues related to tracing

There are too many patients needing to be traced and not enough health workers to trace them

Poor communication and coordination between the HSA and ART providers

There is no coordinator for ART tracing and no specific follow-up health workers

There is no training on how to do the follow-up of ART patients

The health workers just wait for the patients to come back on their own because their are no consequences for them if they don’t trace them

There is no deliberate effort to trace ART patients because there are no incentives for the HSAs

The HSAs do not actually trace patients and instead write fake information about patient visits

The HSAs don’t value tracing because they have too much other work

Stigma and fears

The patient on ART fears stigmatization because they are transferred to a health centre that is near to where they live

Fear of divorce if their spouse or loved one discover that they are on ART

The patient doesn’t want to be associated with ARV drugs because of stigma and fear of isolation

Patients on ART experience side effects from the medicine

Patients on ART fear side effects and the unknown

Patients on ART face mental health issues

Patients stop coming to the clinic because they get their ARV drugs from somewhere else

Fear dismissal at the work place because their employer may discover that they are on ART

Access to ART

Patients have difficulty finding ARVs when they travel both within and outside the country

ARV medicines are not always accessible because of inconsistent drug availability

Not being able to meet strict hospital policies (e.g., coming with a guardian)

The patient just picked up a guardian at the market and the guardian cannot be used to trace the patient

Patients are mobile and they move around a lot

Beliefs

Religion and the belief that prayer, not ARVs, will heal them

Church fellowships discourage them from taking their ARVs and tell them they are healed from HIV

Patients on ART believe that they are HIV negative because they gave birth to a negative baby or re-tested negative for HIV

Beliefs in traditional medicines

Patients on ART believe that they are healed from HIV if they sleep with a virgin or a younger person

Lack of knowledge and acceptance

Patients feel tired of taking their drugs

Patients on ART don’t see the need to be on drugs anymore when they feel better and their health has improved

When there is no improvement in their health, patients on ART are frustrated because they were expecting a quick recovery

The patient on ART has not accepted their HIV status

Patients on ART want to have a normal life and feel the medicine is a burden

Patients on ART are just not serious about their lives

Patients see no value in taking their ARVs anymore because they have given up on life

Patients find new marriage partners and do not want them to find out that they are on ART

Pregnancy and wanting to protect the unborn child from ART

Patients prefer alcohol over taking ART

Patients have too many lovers and not enough time to take their ARVs