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Poor documentation
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Poor filing means that patient files can get lost when patients on ART are being transferred
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The patient has died but their death is not reported
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Patients have little social support in the villages due to lack of counsellors, support groups and community-based organizations
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The patient has moved away to another clinic without being properly transferred
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Patient visits are not being recorded accurately
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Resources needed for effective tracing
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Tracing starts too late because of the way a ‘defaulter’ is defined (e.g., missing an appointment by 2 months or more)
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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
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Patients on ART can’t be found if the HSAs do not have their proper address and/or their locator forms
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They live in areas that are difficult to reach so that the HSAs have difficulty tracing them
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Health workers have difficulty locating patients without working phones or phone numbers
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There is no fuel or dedicated transport for tracing
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Social and financial support issues
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Being too sick to come to the clinic
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The distance to the clinic is too far from some patients on ART
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The guardians of the patient refuse to go the hospital to collect their ARVs from them
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Patients on ART can’t afford transport means to come to the clinic because they face poverty
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A lack of support for ART patients especially when they are orphans
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Patients on ARV medicines may also have to deal with other diseases such as chronic illness
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Patients on ARV medicines feel hungry but they can’t afford to buy extra food
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They are attending to another sick relative (e.g., child)
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Health worker attitudes
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Patients are on ART feel that there is a lack of confidentiality on behalf of the health workers (e.g., drugs given without privacy)
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Patients on ART get disappointed when they are not put on a different ART regimen to help manage their side effects
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Patients are not properly educated on ART because of little one-on-one counselling with the health workers
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Patients on ART do not like the way they are treated by health workers
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Patients feel shy to come to the health centre because there is limited space and no privacy
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Patients on ART get frustrated because it takes too long before they are seen at the hospital
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Anxiety about going back to the clinic after missing many appointments
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To hide from follow-up, patients change their names and identities
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Health worker issues related to tracing
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There are too many patients needing to be traced and not enough health workers to trace them
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Poor communication and coordination between the HSA and ART providers
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There is no coordinator for ART tracing and no specific follow-up health workers
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There is no training on how to do the follow-up of ART patients
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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
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There is no deliberate effort to trace ART patients because there are no incentives for the HSAs
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The HSAs do not actually trace patients and instead write fake information about patient visits
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The HSAs don’t value tracing because they have too much other work
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Stigma and fears
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The patient on ART fears stigmatization because they are transferred to a health centre that is near to where they live
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Fear of divorce if their spouse or loved one discover that they are on ART
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The patient doesn’t want to be associated with ARV drugs because of stigma and fear of isolation
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Patients on ART experience side effects from the medicine
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Patients on ART fear side effects and the unknown
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Patients on ART face mental health issues
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Patients stop coming to the clinic because they get their ARV drugs from somewhere else
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Fear dismissal at the work place because their employer may discover that they are on ART
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Access to ART
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Patients have difficulty finding ARVs when they travel both within and outside the country
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ARV medicines are not always accessible because of inconsistent drug availability
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Not being able to meet strict hospital policies (e.g., coming with a guardian)
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The patient just picked up a guardian at the market and the guardian cannot be used to trace the patient
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Patients are mobile and they move around a lot
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Beliefs
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Religion and the belief that prayer, not ARVs, will heal them
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Church fellowships discourage them from taking their ARVs and tell them they are healed from HIV
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Patients on ART believe that they are HIV negative because they gave birth to a negative baby or re-tested negative for HIV
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Beliefs in traditional medicines
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Patients on ART believe that they are healed from HIV if they sleep with a virgin or a younger person
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Lack of knowledge and acceptance
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Patients feel tired of taking their drugs
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Patients on ART don’t see the need to be on drugs anymore when they feel better and their health has improved
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When there is no improvement in their health, patients on ART are frustrated because they were expecting a quick recovery
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The patient on ART has not accepted their HIV status
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Patients on ART want to have a normal life and feel the medicine is a burden
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Patients on ART are just not serious about their lives
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Patients see no value in taking their ARVs anymore because they have given up on life
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Patients find new marriage partners and do not want them to find out that they are on ART
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Pregnancy and wanting to protect the unborn child from ART
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Patients prefer alcohol over taking ART
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Patients have too many lovers and not enough time to take their ARVs
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