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Table 3 The consolidated list of 64 statements

From: Using concept mapping to explore why patients become lost to follow up from an antiretroviral therapy program in the Zomba District of Malawi

Cluster 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
  1. ARV antiretroviral, HSA Health Surveillance Assistant.