HIV/Aids ARV counselling is standardised by global clinical trials, based on Dr Steven Safren’s Life Steps programme, tested in the USA and China.
An intensive, prescribed process and checklist for counselling HIV /Aids patients using anti-retroviral (ARV) drugs, was used in global controlled trials named ACTG 5175 and HPTN 052.
The standardised counselling session focuses on adherence to the ARV drugs regime, prescribed by pharmaceutical suppliers.
ADHERENCE COUNSELING FOR COUNSELORS
Patient ID …………………. Date ……………………
(Discussion points are to be interactive, non-judgmental, repeated, recorded, aimed at informing, motivating, and changing behaviour)
MATERIALS NEEDED FOR ADHERENCE COUNSELING
- Visual materials to help explain adherence and the biomedical aspects of adherence.
- Adherence tools – pill box, diary card, reminders.
- Knowledge of patient’s regimen and potential side effects.
- Pictures or tools for pill regimen to review and for patient to take home.
- Note card in case of questions for doctor.
1. RAPPORT BUILDING DISCUSSION POINTS
- How long living with HIV?
- Reasons for maintaining one’s health; children, family, goals.
- “Much of this is complicated, and it is important that you understand.”
2. DEFINITION OF MEDICATION ADHERENCE
- Adherence is the degree to which a person sticks to the regimen prescribed.
- Adherence is collaborative between the providers and the patient.
- Importance of taking an active role in one’s treatment.
- Importance of feeling comfortable asking questions and being honest about any problems.
- Adherence versus “compliance”; compliance is yielding or acquiescing, implying that the regimen is not a shared decision between provider and patient. Adherence as a shared decision.
3. EDUCATION ABOUT HIV MEDICATIONS AND ADHERENCE
- Use pictures, models, visual materials, or cartoons available to explain the importance of adherence from a biomedical perspective.
3a. Discussion on replication and resistance
- Replication; HI virus copies itself very quickly.
- When it copies itself so quickly, the virus can change forms. This is called mutation.
- Sometimes, since it copies itself so quickly, it can change to a new form (a mutation) that would be resistant to the medications.
- Combination of the medicines you will be receiving can slow or stop the virus from copying itself.
- When adherence is poor, however, the virus can still copy itself.
- Some medicine is still there (but not enough to stop the virus from copying itself completely) increases the chances that the copies that survive can be ones that would be resistant to the medicines.
- Because of this, even though taking medicines and adhering to the regimen is the best solution, poor adherence can actually lead to the virus being resistant to the medications you are taking.
- Repetition – have the participant explain this back to you after you explain it.
- What questions do you have so far?
- Please explain back to me why it is important to take all of your medicines as much as possible?
3b. Discussion; 95% to 100% adherence is optimal
- Studies have shown that 95% to 100% adherence gives you the best chance of having an undetectable viral load.
- Undetectable viral load means that you still have virus in your blood stream, it just means that there is so little that typical machines do not detect it, but ultra-sensitive machines still can.
3c. Discussion; sharing of medications
- Sharing medications: It is sometimes, understandably, tempting to share medications with others who do not have access to them.
- Unfortunately, the result may be worse for both people than not having any medicines at all – because of the possibility of developing resistance to the medications.
3d. Repeat and discuss 1, 2, 3
4. SIDE EFFECTS
- Discussion of what particular side effects may occur with the regimen the person is taking (e.g. diarrhoea, nausea, headaches, peripheral neuropathy, other adverse effects.)
- Discussion of how side effects sometimes get in the way of adherence.
- Discussion about how after a while, your HIV might get better after taking medications, but that the side effects may make you feel worse – so this might make you want to stop taking the medicines.
- Discussion of possible remedies for side effects (adjunctive medications, relaxation, etc.).
- Encourage patient to speak with the counsellor and / or the doctor about any side effects that come up and a possible plan for them if they do (before deciding not to take medicines because of the side effects).
- What questions do you have about side effects?
5. COMMUNICATION WITH DOCTOR ABOUT PILL TAKING
- Although we want you to be as adherent as possible, we also know that everyone will struggle with adherence.
- The best thing for you is to be honest about adherence issues and to ask whatever questions you have.
- Assess if participant has any questions that they have not previously asked.
- Answer them or write them down for the doctor to answer for him or her.
- General discussion about communication with the study doctor and any difficulties that might get in the way of this.
- HIV treatment information can be complicated at first. It is also normal to forget some of the points we discuss, so we will review them at different visits.
6. INTRODUCTION OF ART REGIMEN
- Show patient each pill and say its name.
- Describe what each pill does.
- Visual prescription to take home (picture of pills, number, timing).
- Discuss timing of each pill and any food restrictions.
- Questions do you have about your regimen?
7. CONCRETE DAILY MEDICATION SCHEDULE AND SORTING
- Sort pills with participant regarding when to take – if possible – using pill box or other method (e.g. sorted bags for each dose that can be labelled, using a punch card).
- Discuss timing of doses.
- Tie pill taking to another behaviour that might occur at the same time; meals, right when participant wakes up.
- Identify times when the schedule might vary (e.g. days when working versus days when not working; days when family is home versus days when family is not at home).
- Make sure times to be taking pills coincide with food restrictions if there are any.
- Review schedule as exactly as possible (for some this might not be possible) – for example, twice a day = as close to every 12 hours versus once at 8 am, and then again at 1pm (five hours later).
- Review – Simplify schedule as much as possible to include meals, other regularly occurring tasks, timing of doses, scheduling sleep, and tying pill taking to a regularly occurring activity (e.g. eating, waking).
- What questions do you have about your medication schedule?
8. REMINDER STRATEGIES
- Involvement of partner if possible, or identifiable person to help them remember to take pills. Overt reminders; watch, timer, reminders to put different places? Storage of pills. Notes ,,,,
9. FAMILY, COMMUNITY, SOCIAL SUPPORT & PRIVACY
- Who in your life knows about your HIV status?
- Who can help you with pills?
- Who can support you about the difficulties involved with receiving HIV treatment?
- Who do you want to keep your HIV status private from?
- How will privacy affect adherence?
- Where will you store the pills?
10. ADDITIONAL POTENTIAL BARRIERS TO ADHERENCE
- Discussion of any other things that might get in the way (e.g. travel, food, life problems, lack of electricity in the home, work outside of the home, privacy, substance use, access to water, child care, family commitments etc.). Attempt to come up with a problem solving plan.
11. HANDLING SLIPS
- Although the goal is optimal adherence, no one is perfect. Discussion of how to get back on track as soon as possible after a slip. Continued communication with provider and counsellor to handle a slip.
12. GETTING TO APPOINTMENTS
- Plan and backup plan for transportation to the clinic.
- Backup plan for when transportation cannot be arranged.
- Plan for child care or additional barriers to appointments (work, life problems, access to transport, commitments).
- Have participant repeat back his or her medication regimen/schedule.
- Give them a medication schedule with visual cues (pictures of the pills).
- Hand out any written or visual materials about pill taking.
- Give contact information for participant to be able to call you if they have a phone.
- Make list with all of the strategies discussed above and re-review them.
- Schedule follow-up appointment to review.
- Take any questions that emerged to the physician and have them come back and answer them, or find out the answers and answer questions.
Patients need to be on HAART in order to survive and the reasons for not taking medications must be dealt with. Generally, no more than 1 dose a month should be missed.
If a dose if missed and then remembered, patients should take it ASAP and then continue with the next dose as scheduled. Many patients have the idea that once they have missed a dose by a few minutes, they should not take it at all.
Source: This post is based on HIV /Aids treatment counselling, after Dr Steven Safren’s Life Steps programme, tested in global controlled clinical trials named ACTG 5175 and HPTN 052.