Social Tract: Module On
Social Tract: Module On
Social Tract: Module On
Module on
Adherence counselling
Adherence counselling 1
OUTCOMES FOR ALL PARTICIPANTS
After this module the learner should:
Have explored the concept of anti-retroviral treatment, the critical value of
adherence and its related concepts.
Understand the various components of pre-ART adherence counselling.
Be aw are of the w ide range, and influential impact of, ART side effects and to
manage the impact of this in counselling.
Have considered the various enablers and obstacles to ART adherence, w ith
particular consideration of the South African context.
Have examined the relevant counselling theories that can be draw n upon in
ART adherence counselling.
Have developed the skills and know ledge for counselling particular client
groups w ith regards to ART adherence.
Adherence counselling 2
1. GLOSSARY
Adherence:
The degree to w hich a patient exactly follows a prescribed treatment regimen that
has been designed in the context of a (consultative) partnership betw een the client
and the health care w orker/counsellor. Poor adherence may negatively impact a
drugs effectiveness.
Com pliance:
The extent to w hich the patients behaviour (in ter ms of taking medications, follow ing
diets, or other life style changes) coincides w ith medical or health advice. This term
has been view ed by many as having a value statement and the ter m adherence is
preferred.
Cross-resistance:
A mutant version of HIV may develop w hich is resistant to more than one drug even
after a single therapy. For example, people w ho develop resistance from taking one
non-nucleoside reverse transcriptase inhibitor (NNRTI) are likely to be cross resistant
to other drugs in the same class.
Enzym e:
A cellular protein w hose shape allows it to hold together several other molecules in
close proximity to each other. Enzymes also induce chemical reactions in other
substances.
Mutation:
Changes in HIVs genetic structure (RNA) leading to alterations in certain proteins,
most commonly enzymes that regulate the production of infectious virus. Mutations
are particularly common in HIV as it reproduces at an extraordinary rate and does not
contain the proteins needed to correct mistakes made during copying of the genetic
mater ial. Some mutations cause the virus to become so w eak that it cannot replicate
effectively; other mutations may cause the virus to become even more virulent.
Nucleoside:
The molecular units that serve as the building blocks of DNA and RNA, the genetic
mater ial found in living organis ms.
Replication:
Reproduction of HIV.
Resistance:
A reduction in an organisms (HIVs) sensitivity to a particular drug. The result is that
a particular drug or combination of drugs is unable to block reproduction or
replication of HIV. Some strains of HIV are naturally resistant to the presence of
anti-retroviral drugs as a result of random mutations occurring on a daily basis.
Resistance can render certain drugs less effective or even completely ineffective,
thus significantly reducing treatment options.
Adherence counselling 3
2. THE ART READINESS ASSESSMENT
Doctors need to make clinical assessments about w hen it is appropriate to begin
ARTs how ever what has been found to be of utmost importance, though, is:
Adherence counselling 4
3. The clients story (Encourage sharing about the clients history)
C. Disclosure
F. ART readiness
Counsellors, together w ith the health care team, should encourage or w ork together
with clients to develop personalised plans to ensure adherence to multi-drug
regimens.
Here are some key principles to assist health care personnel (and thereby the
client):
Adherence counselling 5
Provide practical support (or where to receive these) in the form of pill boxes
and charts
Help clients to identify lifestyle characteristics that could interfere w ith the
treatment plan. See how you could link drug regimens w ith established daily
routines
If the client is interested, the counsellor could assist w ith doing a dry run
with dummy pills (smarties, jelly tots etc.). This could help to give a feeling of
what it will be like to be on ART, assess the degree of adherence and the
potential obstacles.
Help the client to know when and how to access regular feedback on viral
load and T-cell counts.
Assist the client w ith developing tools for assessing the treatment plan. For
example, medication diaries.
Patient/Physician education
Patient support systems
Easy incorporation into patient lifestyle
Dosing not affected by food/fluid intake
Convenient and simple dosing
Good tolerability
Manageable side-effect profile
Maintained quality of life
Few , compact, easy to sw allow tablets
Several strategies to improve treatment adherence are listed. Those that should be
considered prior to the initiation of HAART include education regarding the disease
and antiretroviral therapy (ART) options. Commitment from the physician and patient
that adherence is recognized as an important factor in the success of any ART.
Potential life-adjustments required for the ART regimen chosen should be discussed
prior to initiation of therapy. Once ART has been initiated, it is important to follow up
soon after the initiation of HAART to discuss any side effects or other factors that
may be affecting adherence.
Adherence counselling 6
ART initiation
Tailor the regimen to the patients lifestyle
Start w hen the patient is ready, w hen the patient is committed to the
selected regimen, including dosing schedules and side effects
Follow-up visits soon after initiation are very important: side effects,
comfort, convenience?
Prompt response to any problems, side effects: adjust, change, stop?
Treatment-related strategies
Simplification of ARV regimen: reduced pill numbers, dose frequency,
simplified food requirements*
Avoid drug interactions and minimize side-effects
Directly observed therapy: not ideal for the long-term
(Costly, time-consuming, not feasible lifelong)
Treatment of associated conditions: depression, anxiety, psychotic
disorders
* There is evidence that simplified regimens with reduced pills number and dose
frequencies improve adherence Fortunately, an increasing number of
effective regimens have no specific food requirements.
Involves:
The client having a say in the kind of drug regimen that he/she goes on
The client asking for information
Adherence counselling 7
Asking questions
Making sense of the information
Deciding w hen they want to start
Deciding w hen/how frequently they w ould like a consultation
In order to facilitate adherence, it is really important that the counsellor spends time
with the client w eighing up the pros and cons of beginning an ART regimen. This
process needs to be client-centred and driven by the client. Whilst the counsellor
needs to be supportive, he/she also needs to use challenging skills. These w ill
highlight any contradictions that the client is not consciously aw are of as w ell as
anticipate obstacles that may arise later on.
Patients must adhere to the timing, frequency and dosage of the drug
regimen for a lifelong treatment period
Dosing regimens may be complex
There are differing dietary requirements
Some drugs require refrigeration
Some require preparation
Multi-drug regimens require taking numerous pills per day
Certain drugs may interact
There is a high possibility of experiencing drug side-effects
Loss of confidentiality as a result of being seen taking the drugs
Risk of drug resistance and, therefore, limitations of future ART choices
Unknow n long-term toxicity
Extended life-span
Delayed onset of opportunistic infections
Stronger immune system due to delaying progression of disease
Longer life-span to fulfil dreams and goals
More time to see children grow up and go through life stages
Opportunity to convey ones life experience (through w riting, talking, other
means of communication)
An opportunity to use the experience of HIV-diagnosis to make life more
fulfilling
The opportunity to continue earning a living ( i.e. more productive life years)
Adherence counselling 8
More time to aw ait (and possibly benefit from) the outcomes of scientific
HIV/AIDS research Maybe a cure w ill be found before I get ill?
Better quality of life
More time to do the things you enjoy.
Do not underestimate the daily challenge of side effects and other symptoms of HIV.
It is very important that counsellors are able to EMPA THISE w ith the diffic ulties that
patients are encountering w ith regards to their ART regimen.
Never minimise w hat the patient is experiencing nor label them as difficult patients,
such as 'complainers' or 'hypochondriacs'.
Remember (and remind your clients) that being on ART w on't necessarily bring them
'normal' lives. Besides the challenges of being adherent, living successfully with HIV
does not mean being symptom free. The symptoms may cause psychological
distress together w ith the expectation that successful treatment w ill engender a
'normal' life.
Counsellors need to create an environment in w hich clients can speak thoughts that
ordinarily remain unspoken. This w ill open a forum for validation and support - both
of which are crucial for sustaining the perseverance required by ART.
It is crucial for counsellors to assess the functional impact of any side effect on an
individual's life. For example, if a client is experiencing a bad bout of diarrhoea, it
may be necessary to ask quantitative questions, such as "How often?" and "How
bad?" but also qualitative questions, such as "How much of a problem is this for
you?" and "Is it manageable or not?". These answ ers w ill help the counsellor-client-
health care w orker team to assess whether medication should be suspended,
sw itched or continued.
Most importantly, counsellors need to remind themselves that people living w ith HIV
and AIDS can benefit from role-players w ho provide attentive listening and active
witnessing.
The key to coping w ith side effects may be know ing w hat to w atch out for and having
a plan in place to respond if/w hen problems occur.
Counsellors should not think that talking about side effects w ould bring them on. The
client may, in fact, feel more confident better ar med to deal w ith w hat they know
may potentially happen rather than fearing the unexpected. Some practitioners in
countries like the USA w ill even give prescriptions for treatments of side effects
Adherence counselling 9
before the client has experienced them. This is seen to reduce the w aiting (and
suffering) time of the client as w ell as reduce anxiety about experiencing the possible
side effects.
More importantly, some of the side effects caused by ART may be life threatening.
For this reason it is essential that clients know what early symptoms to look out for
and to monitor for them. In some cases, it is possible to prevent or reduce the
seriousness of some side effects by taking certain preventive therapies a few days
before or at the same time as starting a new regimen.
Bottom Line:
Patients must consult their doctor if they suspect that they are experiencing
drug side effects. Some of these side effects may be potentially fatal.
Various models have, therefore, been devised to help health care workers
understand w hich is the best approach for achieving maximum adherence. We must
also keep in mind the principle of individualisation and that each client has different
needs and, therefore, requires a different response from his/her counsellor. The
educational continuum takes this into account.
Many patients may need both direct instruction (for example, You must take the
correct tablets at the same time everyday) as w ell engagement in problem solving
with their counsellors (for example, How do you think you can remember to take
your pills at the same time every day?). In order to strike an effective balance, ART
counsellors must have skills to move fluidly back and forth along the continuum, ever
mindful of their patients' needs and concerns.
Adherence counselling 10
patients' interests and foster patient self-management and long-ter m behaviour
change.
Counsellor 1: Morning Mary. Its tw o months now since you began ART. How are you
doing?
Counsellor 1: Do you w ant to tell me a bit about how its been going? (Open-ended
question)
[Counsellor 2: Have you been taking your medication all the time?]
Client: Well, Ive been taking my medication as Im supposed to I just feel very tired
all the time and then I w ant to sleep. I cant cook and clean like before. Im so tired
when I w ake up that Im scared that Ill sleep through my morning dose.
Counsellor: It sounds like its been difficult for you. Do you think your tiredness could
be a side effect of the medication?
[Counsellor 2: Its very important that you dont miss any doses. You know that you
have to take your medication at the same time every day!]
Client: Yes, I think it is. The doctor told me that I might feel like this. He also said that
I might get diarrhoea from the AZT/3TC.
Counsellor: Has know ing this made it any easier for you to cope w ith know ing that
what youre experiencing is common?
[Counsellor 2: Im sure it w ill go aw ay soon. Just keep taking your medication.]
Client: Yes, I guess it has. I probably w ould have caught a fright if I hadnt expected
it. I bought the ingredients for a BRAT diet just in case. So I w as prepared.
Counsellor: It sounds like youre being responsible Mary. So youre eating bananas,
rice, apple sauce and toast?
Client: (Laughs) Yes!... but, Sister, some days Im tempted not to take my
medication. I dont like the w ay its making me feel.
Counsellor: Perhaps you have days w hen you wonder if this is w orth it. Maybe the
side effects make you feel w orse than the HIV w as making you feel before you
started treatment?
[Counsellor 2: You know that its really important to keep persisting. Everyone feels
that w ay.]
Client: Yes. (Starts crying). I know that its really important for me to take the
drugs everyday, and Im scared that Ill forget and then the drugs w ont w ork
anymore and Ill get sick and die. Therell be nothing left for me.
Adherence counselling 11
Counsellor: I can see that you realise how important it is to be adherent to your
medication, but it seems like youre putting a lot of pressure on yourself too. Would
you like to spend some time looking at how you can manage these side effects more
easily?
[Counsellor 2: You have to pull yourself together otherw is e youll make yourself
sicker than you are now . Do you w ant that?]
Client: Yes, please. I really need to see if there are things that w ill help me to get
through this.
NOTE :
Prevention counselling in the patient w ith HIV infection must not be forgotten!
Adequate counselling about safer sex practices must be provided to encourage
prevention of new infections and re-infection.
Counsellors and other health care w orkers must bear in mind that a large portion of
the South African population are both illiterate (unable to read due to lack of
education) and innumerate (unable to read numbers). There are numerous
implications of this for prescribing ART w ith the expectation of adherence.
Adherence counselling 12
Here are some tips for the counsellor:
1. Dont assume that the client can read or understand what is written on
their prescription
2. Dont assume that they have already had their medication explained to
them by the doctor or that they understood this
3. Dont think that the client w ill remember w hat you say. If they (or a family
member) are literate, it may be helpful to write dow n the instructions for
taking their medication.
4. If there are family members available, w ith the clients permission, engage
them too in the process of understanding how the medication must be
taken. They may be able to serve as back-up if the client is confused,
doesnt understand or doesnt remember to take his/her medication.
5. Pictures can be very helpful in reminding clients w hen and how much
medication to take. The World Health Organisation has a chart that they
recommend. This could be developed to be given to the client. It is also
helpful for people w ho cannot read.
Try to w ork as closely as possible w ith at least one parent or the primary
caregiver as they are frequently needed to play the role of Treatment
Assistant to the child.
Remember w ho the client is. It is the child and not the parent/guardian. Be
client-centred w hilst maintained constructive, inclusive relationship w ith the
parent/guardian as much as possible.
Depending on the childs age and maturity, believe in the childs ability to act
responsibly, be independent and understand the importance of adherence.
Do not patronise the child.
Include the child as much as possible in all consultation/counselling sessions.
Talk to them and ask for their thoughts, views and opinions. Dont talk to the
adult only.
During the ART readiness assessment, engage w ith the child. Remember to
make use of counselling skills that facilitate the engagement of the child in the
process. These include, asking open-ended questions, summarising, inviting
questions and helping the client to tell his/her story (Egan).
During the information provision stage, ensure that you are operating at the
childs level of understanding. Provide the facts in a clear, concise and user-
friendly manner. If it helps you to use draw ings, pictures or analogies to
explain certain concepts, then go ahead and be creative.
Get in touch w ith the childs feelings. How do they perceive this experience?
The child may feel different, afraid, rebellious, uninformed or eager to co-
operate. Identify these feelings and reflect them back to the client by means
of your empathy skills (Responding to Feelings, Carkhuff).
Adherence counselling 13
TIPS FOR PARENTS OR PRIMARY CAREGIVERS
Here are some tips that counsellors can give to parents or primary caregivers:
If the child is receiving his/her medicine in syrup form, be clear and accurate
as to how much you give;
For the child, the medicines may be vile (despicable) tasting. Try to find a
strategy that w ill help the child to tolerate this. Perhaps you could follow the
syrup with a sweet-tasting drink.
Your child may go through stages w hen he/she is tired of having to take the
drugs, angry or rebellious. You may need to be patient and continue to
explain w hy the drugs are so important. Try not to become forceful or angry
with your child. This may lead to them rebelling even more.
Never refer to the medicine taking as a punishment. The child needs to
understand this in a positive light and try to ow n the fact that they are being
responsible about taking care of themselves and their health.
If your child is aw ay from home or might be aw ay at a time w hen they will
have to take their medication, someone needs to be responsible for ensuring
that this is planned for and that the regular, required medication is taken w ith.
It is important to consider trying not to disrupt the childs daily schedule as
much as possible.
When it is time to visit the doctor or nurse, remember to take your childs
medicines w ith.
Adherence counselling 14
communication? At times you may need to be a voice to amplify or clarif y
messages directed from one partner to the other.
Rem ain neutral: It is not your role to take sides and, in fact, by
supporting one partner over the other you may loose their trust, presence and
hope in the counselling process. Be aware of a natural tendency to side w ith
the same-sex partner as you.
Make the couple aw are of their strengths: Try to find at least one
strength that exists in the relationship, or else focus on each individuals
strengths. The couple w ould not be sitting together w ith you if they didnt care
somew hat about each other and/or the relationship.
Make your role as counsellor clear: Your role is to support BOTH
parties; to remain neutral; NOT to deliver the/a message from one to the
other; to clarify misunderstandings; and to provide factual information.
Adherence counselling 15