ART may be a lifelong undertaking. A relationship of confidence needs to be established from the outset between the patient and the care team. It is important that adequate time is set aside for counselling so that appropriate and informed decisions on therapy and its implications are made by the patient, based on information given to them that is as accurate and as complete as possible. Many people seeking ART will have had prior counselling at the time of diagnosis (pre & post-test counselling). The positive messages and future plans initiated during pre and post-test counselling should be reinforced during counselling for ART.
ART must not detract from HIV prevention messages. Even though the aim of treatment is to lower the amount of HIV in the blood, often to levels below the limits of detection by sensitive laboratory assays, patients must not conclude that it is no longer necessary to use protective measures to prevent the transmission of HIV. Counsellors should stress that HIV can still be transmitted even while on ART.
Whenever available, the services of a care provider with counselling skills are invaluable. However, the counselling and psychosocial support process is an ongoing component of ART requiring contributions from the prescribing physician, the pharmacist, other health workers, family members and peer support groups of PLHA. An assessment of psychosocial support needs should be made right from the start with the intention of assuring that this will be maintained through out the period of therapy.
The issues that need to be addressed during counselling may be broadly classified into 5 categories: Financial considerations, Drug information, Emotional support, Issues of disclosure and Adherence.
3.2.1. FINANCIAL CONSIDERATIONS
In many developing countries the patient or their family meets the cost of ART. Alternatively, drugs may be obtained as part of a clinical trial; as part of an “expanded access” program; through private sector funding, e.g. employment health insurance; or as a donation. It is important to discuss how the drugs are going to be paid for before embarking on treatment since financial constraints are a common reason for default from treatment. The importance of adherence to therapy and the consequences of intermittent therapy, cessation of therapy or of taking sub-optimal doses to minimise drug costs, should be candidly discussed with all concerned.
3.2.2. DRUG INFORMATION
Antiretroviral drugs have received a large amount of publicisation in the popular press. Even in low-income countries many people with HIV know about antiretroviral drugs and may at times have unrealistic expectations about the availability and effects of ART. Counsellors should be equipped to answer questions on the different ART drug regimens, the requirements for clinical monitoring of ART, the expected results, the possibility of treatment failure and the criteria for changing or cessation of therapy. Sources of reliable medical information on ART which are patient oriented, should be identified and provided.
The counsellor must inform that ART is not a cure. Elimination of HIV from the body has not been achieved using the most potent antiretroviral combination therapies available and even when HIV viral RNA is not detectable in the plasma, there is still ongoing viral replication. The drugs will therefore need to be taken for an indefinite period of time. It is equally important to convey an understanding that knowledge on ART is still evolving and that up to date information about the positive and the possible negative outcomes of treatment will constantly be provided.
Some adverse effects such as headache, nausea and minor allergic reactions are common in the first few weeks of ART. Counsellors should be aware of these and reassure clients that some initial adverse effects will usually lessen with time while simple symptomatic remedies can alleviate many of them. The nausea and vomiting that is commonly experienced at the onset of treatment with zidovudine, for example should not lead to discouragement or discontinuation of treatment. Counsellors should at the same time give detailed information on the possibility of potentially serious adverse effects in the event of which drug therapy must be discontinued. Examples are the polyneuritis and hepatitis, which can occur with Reverse Transcriptase Inhibitors and the skin rash that results from a severe hypersensitivity reaction to abacavir. Patients need to know how to recognise the symptoms of these adverse effects and where to go for help should they occur.
The presence and types of food in the stomach affects the absorption of some of the Protease Inhibitors. Dietary changes will have to be made and meals will often have to be planned carefully around a drug regimen. This can be inconvenient and disrupt family and social life. If family members can be involved in discussions about these issues, it will help them to understand the importance of timing meals and changing routines. The counsellor may have to take time to work out a “meal and drug taking time table” that fits in with the client’s and the family’s life style. Many PLHA may resent the constraints that taking drugs imposes on their lives and this has to be acknowledged and explored when starting therapy. Asymptomatic PLHA who feel unable to embark on the strict regime that some regimens will impose on them may do better to postpone treatment and the implications of this advice should also be discussed.
3.2.3. EMOTIONAL SUPPORT AND DIFFICULT DECISIONS
Many PLHA commencing ART in developing countries, experience feelings of guilt, fear, anxiety and isolation because this therapy is extremely costly and not universally available. Many may have partners and/or children who also require treatment and who cannot access it for financial reasons and vital family resources may be being diverted to buy the medications. Patients often know and associate with other PLHA who themselves are not being treated but who were a source of encouragement and support before the decision to commence ART. Very often patients themselves question the wisdom of commencing antiretroviral therapy at all. Time taken to work through these feelings and doubts will significantly enhance commitment to therapy.
ART in symptomatic patients often results in remarkable clinical improvement. This improvement however, is not universal. Furthermore, clinical improvement may be incomplete or short lived particularly in patients who have had prior antiretroviral treatment or when drug resistance or severe adverse effects supervene. Additionally, in many resource-limited settings, treatment is often put off until such advanced stages of immune deficiency that the outcome is less favourable. Counsellors will have to support patients through the disappointment of treatment failure and balance optimism and realistic caution. Depression and despair are common when CD4+ counts do not rise and weight is not gained as had been expected. This is aggravated when the patient is aware of draining his or her financial resources into a treatment that may be viewed as futile. There will also come a time when counsellor and patient will have to discuss cessation of treatment and end of life issues.
3.2.4. CONFIDENTIALITY AND SHARING HIV STATUS*
* Further reading:
1. Counselling for HIV/AIDS A key to caring. WHO/GPA/HCS/95.15.
2. The Implications of Antiretroviral Treatments. Informal Consultation - April 1997. WHO/ASD/97.2.
3. Safe and Effective Use of Antiretroviral Treatments. Guidance Module 4; Guidance Modules on Antiretroviral Treatments. WHO/ASD/98.1; UNAIDS/98.7.
4. Ethical and Societal Issues Relating to Antiretroviral Treatments. Guidance Module 9; Guidance Modules on Antiretroviral Treatments. WHO/ASD/98.1; UNAIDS/98.7.
5. HIV/AIDS and Human Rights - International guidelines. OHCHR/UNAIDS; HR/PUB/98/1.
The disruption of life style brought about by complicated lifelong ART regimens should not be underestimated. Involving a partner or significant other in treatment counselling will make taking antiretroviral drugs much simpler. The counsellor should encourage disclosure of HIV status to partners and/or close relatives so that the burden of the drug-taking schedule can be understood and shared. Informing sexual partners of the continuing risk of HIV transmission, even while on ART, also ensures that protective action is maintained. It is however, important to explore the patient’s own perception of the risks associated with disclosure so that reassurance and support can be planned against such barriers to disclosure as the fear of rejection, abandonment and violence; the risk of loosing one’s employment or the refusal of insurance. Antiretroviral treatment of children presents a special challenge for counselling on disclosure. Should children be told about their own serostatus? Should their siblings be told? Should the school be told?
3.2.5. ADHERENCE TECHNIQUES
Incomplete adherence to the prescribed drug regimen is a major factor that limits the effectiveness of ART. The drug regimens are complex and the duration of treatment indefinite. In order to maximise the benefits of treatment immense personal discipline and commitment are required of the patient. Possible barriers to adherence such as number and timing of doses, number and size of pills, food restrictions and fear of undesirable side effects, should be identified and used to design programs to support adherence. A “drug timetable” is useful and helps patients with their drug-taking schedule. Reassurance concerning the immediate and long-term side effects of the drugs is also very helpful and enhances adherence. In addition, the patient should be given explanations on the variety of alternatives available in the event that an initial drug regimen becomes intolerable.