Follow up Counseling and Positive living

Session objectives: At the end of the session, the participant should be able to:

Explain the components of follow up counselling

Explain the steps in behaviour change communication

Emphasise on treatment adherence

Content

Activity/ Method

Introduction,
Objectives

Session

Components of follow
up counselling

Steps in behaviour
change communication

Trainer
Presentation

Trainer
Presentation

Trainer
Presentation

Resources
Needed

Time

Slides

LCD or
Overhead

3 minutes

1-2

3 minutes

3-6

10 minutes

7-12

7 minutes

13-15

6 minutes

16-18

8 minutes

19-21

2 minutes

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Projector
LCD or
Overhead
Projector
LCD or
Overhead
Projector
LCD or

Importance
Adherence

of

ART

Trainer

Overhead

Presentation,

Projector,

Case Study

Flip Chart,
Markers

Challenges
Adherence

to Trainer
Presentation

LCD or
Overhead
Projector
LCD or

Improving Adherence

Trainer

Overhead

Presentation,

Projector,

Discussion

Flip Chart,
Markers

Summary

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Presentation

LCD or
Overhead
Projector

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Key points:

Taking time for education and support of the patient are essential

All members of the healthcare team should be involved

High rates of adherence are vital to ensuring continued efficacy of ART

Adherence and safer sex practise must be reinforced at every visits

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Follow up Counselling and

Positive living

Trainers Notes:
This session should take approximately 60 minutes to implement.

Session objectives

Explain the components of follow up

counselling
Explain the steps in behaviour change
communication
Emphasise on treatment adherence

Trainers Notes:

Present the module learning objectives.

The aim of this session is to discuss the steps in behavior change

communication, the importance of patient adherence to ART, barriers to
adherence, availability of free supply, subsidized and commercial brands of
condoms.

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Ask the participants if they have any questions about the objectives before
continuing

Components of Follow up
counselling
Disclosure
Safer sex
Positive living
Mental health
Stigma and discrimination

Trainers Notes:
Disclosure: (partner, children and family)

Disclosure
Issues in disclosure
Forms of disclosure
Full disclosure
Partial disclosure

Trainers note:
Ask the participants the following questions and brainstorm

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Who needs to know about his/her HIV status?

What do different people need to know?

How will family, friends and community react?

How will it affect relationships and social life?

Full disclosure: publicly reveal their HIV status to everyone in life

Partial disclosure: To reveal only to certain people ex: family members

Outcome of Disclosure
Potential positive

Potential negative

Accept their own status

Blame and abandonment

Reduce the stress of

coping
Access medical services
they need
Reduce the stigma
Safe sex

Rejection and Labeling

Abuse
Discrimination
Family disruption
Issues with Copinganger and frustration

Plan for future

Trainers note:
Trainers note: Steps in disclosure Why to whom when and where, how to disclose

Safer sex
Safe sex : No risk for infection
e.g. fantasy, masturbation
Safer sex : Minimal risk for infection
e.g. condom usage, oral sex with barriers
Unsafe sex : High risk for infection
e.g. anal or vaginal sex without a condom

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Behaviour change communication

Stages

Our Role

1- Pre-Contemplation

Provide information

2- Contemplation

Help them think about possible damages

3- Preparation

Helps identify ba rriers and facilitators of

change

4- Action

Encourage, Help address problems that

may arise

5- Maintenance

Actively support efforts to maintain change

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Components of Behaviour Change

Knowledge
Skills
Motivation
Resources
Support

Availability of condoms

Availability of free supply, subsidized and

commercial brands of condoms

Trainers Notes:

Ask participants to discuss the point.

Stress the importance of discussing the availability and usage of condoms to
the patient
Use BCC stages with condom usage and adherence issues

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Mental health
Common psychological problems
Depression
Thoughts of suicide
Alcohol abuse
Low self esteem
Others denial , shock and anger

11

Trainers Notes:
Depression identifying symptoms

Feeling sad most of the days

Difficulty finding pleasure

Life is not worth living ( thoughts of suicide)

Positive living
Stop the spread of HIV
Eat healthy food
Get emotional support
Personal hygiene and good habits
Exercise regularly
Continue to work
Plan for your family
Drug adherence
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Treatment Adherence

Discussion Questions
How much regularity of therapy
(adherence ) is required in most chronic
diseases, for example diabetes?
If HIV is a chronic, manageable disease
like diabetes, is this level of adherence
adequate?

Trainers Notes:
Ask participants to discuss each of these questions.
Note the range of answers given by the participants for later comparison.
It may become necessary to discuss the reasons for the difference at this point itself in
the event of an advanced audience, but that discussion is best deferred for later.

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Adherence required for HIV

therapy
>95% adherence is necessary to achieve
viral load <400 copies/ml in 81% of the
patients
10% reduction in adherence is associated
with a doubling of HIV RNA level
~80% adherence may be sufficient to
achieve therapeutic goals in other chronic
disease states (ex; hypertension)

Trainers Notes:
HIV is increasingly considered a chronic manageable disease, and with the impressive
gains made with
ART, it is often being compared to diseases like hypertension. However, keep in mind
that a compliance level of 80% is usually adequate to ensure successful treatment in
chronic disease like hypertension. However, with ART, a much higher level of
adherence is required. For patients taking at least 95% of their medications (at least 57
of their 60 monthly tablets), the long term success (as defined by complete virological
suppression) is 81%.
Even more worryingly, with even a small drop in compliance, the success rate falls
steeply. For example, in a patient taking about 55 of his or her 60 monthly tablets, the
long term success rate is less than 50%.
Readers Notes:
It is important to remember that although there is enthusiasm in categorizing HIV as a
chronic manageable disease, it is not as simple as managing other chronic illnesses like
hypertension. Long-term success can only be achieved with complete virological
suppression (as discussed in the session on ART), and this requires very high rates of
medication compliance.
A small reduction in the regularity of taking medications can have disastrous long-term
effects. Reflect for a minute on whether you have ever completed a full course of
antibiotics as prescribed by a doctor.

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Discussion Questions

What are the challenges to Adherence?

Trainers Notes:

Ask participants to discuss the questions.

Note the range of answers given by the participants for later comparison.

Challenges to Adherence
Side effects of HIV therapies
Lack of belief in benefits of therapy
Lack of knowledge about the disease and
drug therapy
Untreated depression
Substance abuse Alcohol
Non disclosure

Trainers Notes:
Participants may have already mentioned some of the reasons for poor adherence
during the brainstorming exercise. The following two slides review some of the
important causes.
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 Side effects of therapy are a potent disincentive. This is especially true with stavudine,
where neuropathy can be very disturbing. Patients who are well counseled about the
disease and the treatment have less adherence problems. These patients report early
with problems without resorting to methods that may be harmful in the long run. They
also report more regularly for follow up.
Patients who believe in therapy tend to do better and this could be because such
patients generally take medicines more accurately. This process could be promoted by
a drug buddy system, a linkage group for support or by a DOTS approach.
Drug use and psychiatric illnesses contribute to poor adherence. There may be value
in ensuring that a heavy alcohol user or drug user is rehabilitated prior to ART; patients
with depression should have psychiatric care before and during ART.
Readers Notes:
There are numerous reasons why patients do not take their medications regularly.
Side effects of ART were reviewed in a previous module. Some of these are very
acute, but most of them, like neuropathy of stavudine are long term and persistent.
Some such as lipoatrophy have little remedy; and these can be a cause for concern. If
side effects are not addressed, the patient may try to tailor therapy him or herself with
disastrous long term consequences.
The importance of educating the patient relevant to his or her level of understanding is
very often overlooked. A patient who understands the disease, the therapy and the long
term issues involved in taking ARVs usually has better compliance and better
outcomes.
In caring for HIV patients, often problems like drug/alcohol use and psychiatric issues
are not addressed. These issues need to be dealt with before starting a patient on ART.
Earlier ARV therapies were characterized by unrealistic dosing schedules, making
them impossible to follow. The current regimen involves one pill twice daily. There are
many studies that support this information (see below).

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Challenges to Adherence
Lifestyle factors
Lack of social and family support
Logistic barriers
Transportation problems
Inconvenient appointment times
Cost of medication

Healthcare professional factors

Lack of experience with HIV patients
Ineffective interviewing style

Trainers Notes:
It is important to ensure that the patient is able to integrate the therapy into his or her
lifestyle. This is especially important in mobile populations like factory workers. These
patients should be advised on strategies to ensure continuity of therapy.
Ask participants: How often do you assess the social support of the patient?
Social supports are an important determinant of adherence. Patients who have some
support fare better than those without; involving a family member or a friend (with the
patients consent) will help the process.
Ask participants: How will migratory workers who reside in Mumbai for 10 months
a year and returns to his village in Bihar for 2 months cope?
Logistic barriers can be major issue, as the therapy is available only at few centers.
Transportation and appointment timing/clinic hours may be inconvenient for certain
groups like manual laborers.
Attendance at the clinic may mean loss of a days wages, which is significant for
manual laborers.
Outreach clinics, satellite centers, and involvement of community based organizations
may be some ways of getting around logistical problems.
Healthcare professional factors have emerged as a potent adherence predictor.
Lack of experience with HIV-infected patients and poor interviewing style have been
found to be predictive of poor adherence.

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 The expertise of the physician affects adherence. An experienced physician will know
and recognize the warning signs of adherence problems at an early stage, especially of
non compliance, thus their patients tend to have better outcomes.
Readers Notes:
Studies demonstrate some reasons patients miss doses; these include forgetting,
being too busy, being out of town, being asleep, being depressed, having adverse side
effects, and being too ill.

Improving Adherence
ART preparedness counselling
Address psychiatric and substance use
issues
Increase levels of support:
Social support network

Educate patient about HIV

Pill organisers/simplify regimen
Reminders
A trusting provider-patient relationship

Trainers Notes:
There is not one single intervention to improve adherence that is considered best. A
menu of options is necessary, one or more of which may prove useful to a given patient.
Readers Notes:
The practical strategies which have been shown to improve adherence are varied, with
a few consistent themes. Adherence is achieved only when there is a negotiation of the
treatment plan, where the patient feels that he or she is involved in the decision making
process.
Assessing the patients substance use and psychiatric issues prior to therapy helps to
improve adherence.
Patient education: Discussing with patients the need for treatment, the expected side
effects and management of common problems also helps improve adherence.
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 Simplification of the regimen, i.e., with reduced pill numbers and frequencies, is
associated with better adherence, as is the reduction and treatment of adverse events.
Reminders: Periodic reinforcement is important to ensure that the patient does not
forget to take the medications. In resource limited settings involving other players like
NGOs, Community Based Organizations, other organizations related to supporting
PLHIV, and some form of supervision by family or friends through DOTS could also
help.
Recruitment of family and friends to support the therapeutic plan and its
implementation is associated with improved outcomes. Family and friends can also be
employed to supervise DOTS.

Methods to Assess Adherence

Self reporting (3 day or 7 day recall)
Pill count
Clinical opinion
Biological assays

Readers Notes:
The issue of assessing adherence is very complicated. No method is fool proof, but
some are more promising than others.
Self reporting of adherence is flawed, especially when there is high expectation on the
part of health care providers for patients to be adherent. However, data has shown that
the use of a self reporting questionnaire for two week recall and one month recall are
reasonably accurate.
The pill count is the low cost alternative for assessment of adherence. It is more
effective when unscheduled pill counts are performed and this correlates very well with
success of therapy.
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 Pill counting is recommended by the national program. At every visit for a prescription
refill, the number of pills remaining in the medication box is counted (care should be
taken to ensure that there is no judgmental or threatening atmosphere) and the number
of pills consumed is estimated. This is compared against the number of pills expected to
be consumed; this is expressed as a percentage equaling adherence. This can then be
used to decide if the patient needs help with therapy. (The adherence estimate should
be considered in context of other predictors like regularity for review visits.)
Clinician opinion is also considered an alternative for the assessment of adherence.
This is very error prone and studies have shown that clinicians consistently over
estimate adherence. In fact, one study showed that patients with poor adherence were
identified only about 24-66% of the time. Therefore this can only be used as an adjunct
with some other form of assessment of adherence.

When estimating adherence to any treatment, biological assay for drugs is

considered the best method.

However, this approach is very expensive and not possible at the periphery.

Interventions for Poor

Adherence
Increase the intensity of clinical follow-up
Shorten the follow-up interval
Involve family and friends

Trainers Notes:
It is important to increase the support and intensity of the treatment when poor
adherence is identified.

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 In the event that the patient is going through a long difficult phase of his or her life,
where no intervention appears to help, as a last resort, temporary discontinuation may
be option, as a temporary complete stop is better than long term irregular therapy.
Before going to the next slide, ask participants: How can adherence be assessed?
Note responses on a flipchart or board before leading a discussion on the next slide.
Readers Notes:
With better monitoring, more patients with adherence issues can be identified early.
Some patients may require ongoing assistance from support team members from the
outset, such as chemically dependent patients, mentally impaired patients in the care of
another, children and adolescents, or patients in crisis.
New diagnoses or symptoms may influence adherence. For example, depression may
require referral, management, and consideration of the short and long-term impact on
adherence. Cessation of all medications at the same time may be more desirable than
uncertain adherence during a two month exacerbation of chronic depression.

Key points
Taking time for education and support of
the patient are essential
All members of the healthcare team
should be involved
High rates of adherence are vital to
ensuring continued efficacy of ART
Adherence and safer sex practise must be
reinforced at every visits

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