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Counseling for HIV / AIDS
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Section-V
Counseling for HIV / AIDS
14. Counseling for HIV
15. Health Care Seeking Behavior of People Living with HIV/AIDS
16. Mitigating Stressors of HIV by Involving the Significant Others
17. Community Level Counseling Interventions for HIV/AIDS
18. HIV/AIDS Counseling in India: The Saksham Experience
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14
Counseling for HIV
– Joglekar Neelam & Ayesha Rajukhan Momin
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ABSTRACT
Counseling is essentially a confidential dialogue between an individual/couple and a counselor,
aimed at enhancing individual’s abilities to make personal decisions. Pre-test counseling,
post-test counseling, adherence counseling, couples counseling, crisis counseling and grief
or bereavement counseling are the types of counseling practiced in the fields of HIV/AIDS.
For achieving behavioral goals, counselors need to have empathy and inculcate verbal and
non verbal counseling skills. Correct and timely documentation helps in enhancing quality
of counseling care given to the client. Counselors’ ability to identify the cause or trigger for
client’s problems and empower the clients in working out a plan to resolve their crisis is
essential. The actions taken by the counselors could be continuously reviewed by the
supervisors to ensure their growth as a counselor. Skill building needs of counselors can be
identified through direct observations, exit interviews of the clients, reviewing counselor’s
notes and time-to-time evaluations.
INTRODUCTION
Counseling in HIV/AIDS is an important element of HIV care. It deals with the psychological needs
of the individuals with HIV. Counseling is the best help that a provider can provide to the individual to
cope up with the disease and its consequences. HIV virus not only attacks immune mechanism of a
human being, but also affects person’s mental health. People living with HIV/ AIDS (PLHAs) have to
face a lot of uncertainties pertaining to their social status, health and well being, issues pertaining to
families, jobs etc. The uncertainties arise mainly due to the perceived stigma and anxiety that an individual
with HIV faces. Thus it is a mandate to provide HIV counseling at the time of its diagnosis in order to
best deal with the psychosocial issues of the person.
Following illustrations accentuate the need for counseling intervention in the field of
HIV/AIDS.
Prasad was a young business man living with his wife and children. At the age of 28 he was
diagnosed with HIV infection subsequent to the blood donation and investigations following that. He
190 HIV / AIDS in India
underwent a great trauma because of sudden confrontation with this calamity. With the help and kind
support of his wife he could rise up in his life. In due course of time he was started on ART medicines
at a busy ART center.
Soon Prasad resumed his routine life and was again busy in his business activities as earlier. Once he
had to go to other town for 6 months on business work along with his father who was his close aid in
the business. Prasad kept his wife and children back in town and promised to take good care of him.
However, soon he got engrossed in his business activity compromising his health. Ultimately, he landed
up in falling sick and his father took him to a local traditional healer whom he knew from past. Unaware
of the HIV status of Prasad, the healer stopped Prasad’s ART medicines and treated him with his
medicines. Consequently, Prasad succumbed to the shooting up of his ‘viral load’ because of stopping
ART. The fear of disclosure of HIV status led to Prasad’s death, even after knowing that ART would
have been life saving for him.
Raju was an auto rickshaw driver. He was frequently falling sick and hence finally his doctor
decided to get his blood tested for HIV and referred him to a pathologist. Raju was tested positive for
HIV and hence the pathologist sent the reports directly to the doctor. Doctor immediately called Raju’s
wife and informed her about the report. He advised her to take him to the public hospital where HIV
treatment was available. Raju’s wife was shocked to hear the report. She also got angry as she felt
betrayed and at the same time was very worried of herself having the disease. That night, when Raju
returned home she started verbally abusing him. While scolding and blaming for betrayal, she disclosed
his HIV status to him in front of his parents and teenaged children. Raju felt very offended with the
episode and did not know how to face to this unexpected turn of events. He headed straight to the liquor
shop and then onwards he started drinking a lot. He started abusing his wife physically. He also had to
sell his rickshaw and had no means to support his family. He stopped all interactions with his family,
community and society at large. He stopped attending social functions and withdrew himself from
social life. Raju’s family is now in deep financial crisis and is finding it hard to make ends meet. His
children can no more go to school. All money that Raju’s wife manages to earn as a maid is consumed
by repeated hospitalization and ill health of her husband.
In our society, HIV disease is invariably linked to premarital and extra marital sex, which is disapproved
by most of the societies as immoral behaviors. High rates of HIV are observed in ‘Men having sex with
Men’ as well as ‘Intravenous drug users’. Both these practices are considered as abnormal or deviant by
almost all cultures and societies. As the community associates HIV with such ‘disapproved behaviors’,
the individuals with HIV/AIDS are labeled as immoral by the society and lose their social status.
A human being is a social creature. One’s social status is of foremost importance for one’s social
life. Loosing social position is considered as greatest loss to a person. It is also considered as equivalent
to losing a life. In such a situation a person may withdraw from his life.
In South Africa, suicidal ideation among 189 clients attending ICTC in general hospital was explored.
The investigators found that young men were more likely to have suicidal ideation as compared with
women and older age group clients. In the study, investigators recommended early intervention
to prevent subsequent suicides or suicidal attempts to be included in HIV counseling package (Schlebusch
et al., 2012). In HIV disease the ultimate goal of counseling is to accelerate coping mechanism, maintain
or restore individuals social well being and prevent social withdrawal.
Counseling for HIV 191
Almost more than 25 years have passed after the diagnosis of first HIV infection in India. In the
initial years of the epidemic, nobody could think that it will be a public health problem in India, however
as the years passed and more and more cases got diagnosed, a need was felt for a nationwide control
programme. In 1992, India’s first National AIDS Control Programme (1992-1999) was launched, and
National AIDS Control Organization (NACO) was constituted to implement the programme (NACO,
2012). HIV counseling and testing services were started in India in 1997. There are now more than 4000
Counseling and Testing Centers, mainly located in government hospitals.
HIV counseling and testing services are a key entry point to prevention of HIV infection and to the
treatment and care of people who are infected with HIV. At the time of availing counseling and testing
services, people can access scientific information about HIV prevention and care and undergo HIV test
in a supportive and confidential environment. People who are found HIV negative are supported with
information and counseling to reduce risks and remain HIV negative. People who are diagnosed with
HIV infection are provided psycho-social support and are linked to the treatment and care. As of today,
only 13 percent of HIV positive people in the country are aware of their HIV status. The challenge
before NACO is to make all HIV infected people in the country aware of their status so that they adopt
a healthy lifestyle, access life-saving care and treatment and help prevent further transmission of HIV.
Thus, counseling and testing services are important components of prevention and control of HIV/
AIDS in the country (NACO-ICTC, 2012). The role of counseling is not just limited to ICTC centers but
a large number of Targeted intervention (TI) programs are also providing counseling to connect people
with HIV to the care and treatment services, to bring in behavioral change and to prevent further
transmission of HIV to general community. In India, currently, the epidemic remains concentrated in
specific high risk populations and their sexual partners. Targeted Interventions are preventive interventions
focused at High Risk Groups and Bridge populations. Increasing coverage of TI projects and ICTCs has
helped PLHAs to enter the umbrella of continuum of care and live productive life.
Many research studies conducted in various parts of the country has explained how counseling has
provided an encouragement to PLHAs to have an optimistic view towards their life. In the era of no
treatment, i.e. before the existence of ART, studies have demonstrated that effective counseling helped
people to sustain their hope. A study conducted in Zimbabwe among HIV infected women endorsed the
important role of counseling in providing psychological support. Respondents cited the importance of
comforting support from counselors, especially when the HIV diagnosis was revealed, and advice about
ways to maintain optimal health and functioning. They further indicated that counseling should be
continuous, given the complexity of the psychological aspects of HIV and the tendency for information
conveyed in a single session not to be retained. Since most women did not inform their relatives of their
HIV status, support groups were important for overcoming isolation and sharing feelings and experiences
(Krabbendam et al., 1998). In Uganda NGO’s counseling support in district hospitals, has helped clients
and their families to cope up with HIV and AIDS, with 90.4% of clients revealing their serostatus, and
57.2% reporting consistent use of condoms in the past 3 months. As a result of counseling, over half of
the clients (56.9%) made plans for the future and 51.3% wished to make wills. There was a high level
of acceptance for people living with HIV/AIDS (PLWHAs) by families (79%) and the community (76%)
(Kaleeba et al., 1997). In a study conducted among PLHA men and women in Uganda, it was observed
that counseling helped in supporting them to adopt positive living. For those receiving ART, counseling
reinforced treatment adherence (Nyanzi-Wakholi et al., 2009).
Counseling interventions are also used widely to bring in behavioural change. Some studies in India
showed that multiple counseling sessions or behavioural interventions with men over two years increased
condom use by men with female sex worker partners. These studies were conducted among STD clinic
attendees and clients of females sex workers (Bentley et al., 1998; Lipovsek et al., 2010).
Studies done in India as well as other parts of the world have reported treatment adherence getting
affected by psychosocial behavioural factors like stigma, disclosure issues, lack of social support,
interpersonal relationship, especially among partners of married couples, depression and experience of
traumatic events in life (Kumarasamy et al., 2005; Mugavero et al., 2006; Murray et al., 2009; Joglekar
et al., 2011). These issues can be effectively dealt with effective counseling sessions which help in
boosting moral of the person, increasing level of self esteem and confidence and creating wish for living
healthy life. A study conducted in Bangalore among participants from public, private and public-private
HIV healthcare settings compared their response to treatment. It was found that adherence and treatment
success were significantly higher among patients from public and public-private settings compared with
patients from private facilities. These results suggest a possible benefit from counseling by a multi-
disciplinary team of workers might have played a role in better response (Shet et al., 2011).
All these evidences show that HIV infected people face a great psychosocial turmoil during the
process of coping up with their disease. An effective counseling intervention can provide them support
and empowerment to face various crisis situation in the course of their life. All providers involved in the
health care related to HIV should master the counseling skills. This skill can be a precursor for the
success of HIV health care.
Counseling
Psychologists and Psychotherapists define counseling as, “The process that occurs when a
client and counselor set aside time in order to explore difficulties which may include the stressful or
emotional feelings of the client”. The other definition of counseling says that it is an act of helping
the client to see things more clearly, possibly from a different view-point. This can enable the client
to focus on feelings, experiences or behaviour, with a goal to facilitating positive change. Counseling
is an interaction between client and a counselor that leads to enhancing the ability of the client to
take a better decision. NACO defines counseling as “Essentially a confidential dialogue between
an individual/couple and a counselor, aimed at enabling the individual to make personal decisions
in the context of HIV/AIDS” (NACO, 2004). Counseling also can be the first step towards desirable
changes in client’s behavior. Desired behavioral change in HIV disease could be safer sexual behaviour
for HIV prevention, better control over emotions, improved adherence, steps towards prevention
of secondary transmission, better care seeking, interactive social life, improved interpersonal
relationships, returning to employment, etc. These optimistic ways of life helps client in leading his
life more smoothly with better quality of life.
HIV counseling is a challenging as well as a skilled job. The counselor has to be very dynamic and
sensitive to cater to different client types. HIV counseling involves dealing with people with variety of
behavioral practices i.e. HIV low risk individuals, high risk groups such as Female Sex Workers (FSWs),
Men having Sex with Men (MSMs), Intravenous Drug Users (IDUs), clients of sex workers etc. HIV
counselors need to deal with people of all ages, education levels, occupations, socio economic strata,
and different socio cultural backgrounds. Their risk levels, vulnerabilities might be different. Various
environmental, socio economic factors might shape their behaviors, and their coping mechanisms.
Counseling in HIV/AIDS is a core element of the holistic approach to health care. During the process of
counseling psychological aspects are identified. Counseling enables frank discussion of sensitive issues
in the client’s life.
HIV counselor should have empathy towards the clients. He/she should not have any bias towards
a particular profession or behaviors. Individual norms or ones own value system should not affect the
counseling that a counselor is providing. Often the counseling is tailored to heterosexual relationships
and the HIV risk associated with them. Counselors have to deal with men having sex with men as well
as female sex workers, transgender population and Intravenous drug users. Before counseling, the
counselor should be sensitive towards their social vulnerabilities and challenges. He/she should be aware
of societal taboos associated with these behaviors and consequent culture of silence for discussing their
issues. In risk reduction counseling, the preferences should be worked out considering environmental
and social challenges, these clients might have. He/she should be aware of and should be able to discuss
various decision makers /gatekeepers shaping the clients behaviors and how the client can be empowered
to take actions for HIV prevention. HIV counseling is about understanding what is creating a risk to the
client or concerns of the client and what could be the possible solutions to eliminate the same. Another
important objective of counseling should be empowering client to think calmly about his/her worries/
issues and take appropriate decisions.
With effective counseling the clients becomes empowered and able to …

 Speak openly about the things that are bothering him/her
 Identify the reasons for his/her concerns
 Predicts barriers for overcoming his/her problems
 Discovers his/her strengths and weaknesses
 Learns skills to overcome the weaknesses
 Designs strategies to overcome his/her worries/ problems
 Practices the strategies
 Does not get upset with the same problem in future
Types of Counseling in HIV/AIDS

HIV counseling can broadly be divided into 2 sub-groups as ‘Client initiated testing and counseling’
and ‘Provider initiated testing and counseling’.
Client Initiated Counseling : As the name suggests, client initiated counseling is a counseling
service opted by the client himself. We can also call it as a voluntary counseling session. This counseling
depends upon client’s perception of risk of getting HIV and need for test. Clients visiting VCT centers is
an example of client initiated counseling.
Provider Initiated Counseling : On the other hand provider initiated counseling is recommended by
client’s health care provider (HCP) as a part of the treatment given to him/her. Provider initiated counseling
and testing helps the doctor or HCP in treating the client in better manner. Recommending HIV test
under antenatal care or under RNTCP are few examples of provider initiated counseling.
HIV counseling can be classified into various types as follows:

a. Pre-test Counseling : This counseling aims at preparing the client to undergo HIV test. In this
counseling client is provided with the complete information regarding HIV/AIDS covering
routes of HIV transmission, difference between having an infection and suffering from AIDS.
Describing relationship between STI and HIV, parent to foetus transmission and its prevention,
HIV prevention in general and treatment. Client’s HIV risk assessment is also done in pre test
counseling. Assessment is made about whether the client understands his vulnerability towards
HIV infection. This is called as ‘Risk Appraisal’. Risk reduction plan is developed and risk
reduction goals are set up in this counseling. Psychological and mental preparation to accept
the HIV report is done during pretest counseling, also client is counseled for management of
anxiety and stress he/she faces till the report comes. Client undergoes blood collection for HIV
test after written informed consent based on his/her own choice to undergo a test.
b. Post-test Counseling : In this session, review of the HIV information provided at pretest
counseling sessions is done. One should also assess the anxiety and stress level of the client.
HIV test result is informed, explained and his/her understanding of it is judged. If report is
negative, concept of window period is explained and the need for retesting is explored. Risk
reduction plan is reviewed and adherence to it is assessed. Adherence to safer sex practices is
emphasized. Partner testing is also recommended. If the report is positive, his/her emotional
reaction to the test result is observed and the client is allowed some time for his/her emotional
outburst. NACO VCT guideline (NACO, 2004) provides details about psychosocial issues of
PLHAs. Depending on the emotional reaction and client’s capacity and ability to comprehend,
information about healthy life style is provided. Repeated counseling sessions are scheduled as
per requirement. Partner testing and safer sexual practices are emphasized. Pre ART assessments
are explained and done. Information about ART and prevention of opportunistic infections is
also provided to the client. Social support mechanism is discussed with the client and disclosure
of one’s HIV status to a significant other is encouraged weighing the risks and benefits of it.
Client’s willingness, ability and confidence to disclose HIV report is assessed and the disclosure
is planned accordingly.
c. Crisis Counseling : Crisis is not a traumatic event or experience in itself but it is an individual’s
reaction or response to the situation. Crisis counseling is restricted only to that particular event
which has triggered the crisis. It minimizes the severity of the traumatic situation. This type of
counseling is required till the reaction to the trigger lasts. Assessment of the situation, educating
and helping the client to understand the situation, offering them support, encouragement to get
support from near and dear ones to overcome the crisis, helping to establish dialogue between
different people affected by the crisis and finally developing coping strategies for the situation
are major aspects of crisis counseling (Coats, 1990). The success of crisis counseling lies in
identifying the trigger and developing strategies to remove it.
d. Grief Counseling : Grief or bereavement is a human response to a permanent loss of someone
near and dear. Most of the times this loss is in the form of death. In the field of HIV, counselors
come across many situations where they have to counsel the children or spouses of the HIV
infected individual after his/her death. Main aim of this type of counseling is assisting a person
accepting the death and minimizing the feeling of insecurity and loneliness. Stigma and
discrimination due to HIV infection is also an important factor that should be taken care of in
grief counseling. Grief counseling includes few steps like assessing the perception of death,
providing emotional support and bringing the client back to normal life. We may see different
types of manifestations of grief experienced depending upon the age, sex, amount of closeness
of relationship with the person and economic dependence on the person who died. Losing the
interest in normal daily activities, loss of concentration, depression, denial of loss are few
examples of the manifestations. Reversing back in the developmental stages is a unique
manifestation that can be seen in children.
e. Adherence Counseling : HIV is no longer a fatal/incurable disease. It has become manageable
illness with the advent of Anti Retroviral Therapy (ART). Government of India launched ART
roll out program in the year 2004. ART effectively suppresses replication, if taken at the right
time. Successful viral suppression restores the immune system and halts onset and progression
of disease as well as reduces chances of getting opportunistic infections. Medication thus
enhances both quality of life and longevity. Adherence to ART regimen is therefore very vital in
this treatment. Any irregularity in following the prescribed regimen can lead to resistance to
HIV drugs, and therefore can weaken or reverse its effect. Adherence is defined as ‘the act or
quality of sticking to something—to adhere to something’. In the context of ‘Anti Retroviral
Therapy’, adherence means a more collaborative process between the patient and provider.
The patient has critical role to play in his treatment and has to make a commitment to follow
the prescribed regimen as best as possible. Adherence to recommended regimen should be
>95% to avoid development of ART drug resistance. This means that missing >3 doses per
month are associated with increased risk of drug resistance and failure to treatment (NACO,
2007). Even though in case of HIV, adherence counseling is mainly associated with antiretroviral
treatment, it should also be included in the context of any other long term treatment like AKT
(treatment for tuberculosis). Adherence counseling includes assessment of commitment of
the client to take the treatment life long, education about the treatment and its side effects,
anticipation of barriers, identifying the ways to overcome them, communication with healthcare
provider, concept of resistance etc. Adherence counseling should become an integral part of
all drug pick up appointments of the patients. In this, counselors should be able to identify the
barriers to adherence, which may include forgetfulness, attitudinal barriers, fear of side effects,
cultural, religious and socio-economic factors. Clients may also face problems for coming for
drug pick up appointments which would ultimately affect adherence. Counselor needs to
regularly emphasize treatment education, importance of adherence and work with the clients
to eliminate barriers, try to fit in the drug consumption into his/her lifestyle so that he/she
never forgets to consume the drugs. It might also be needed to work on perceived stigma of
the client as this may inhibit client from consuming ART in front of other people. Adherence
counseling is not only a counselor’s responsibility but it’s a team work to be performed by
doctors, nurses, pharmacist and patients. Counselors may at times involve home based care
givers of the patients in order to enhance adherence. Some reminder strategies like alarms,
calendars also help to enhance adherence. Considering the benefits of good ART adherence,
adherence counseling should be an integral component of HIV counseling process and
management of HIV patients.
f. Couples Counseling : In the field of HIV, couple counseling plays very important role in
sustaining couple relationship, family and social life of an individual. This counseling aims to
maintain the relationship trustworthy, sensitive and based on the mutual understanding. The
objective of the counseling should not be to find out who was the source of the infection
within the couple or how the infected person got it. Rather, the couples counseling helps to
build harmonious, careful, supportive and healthy couple relationship. If the couple is HIV
discordant, the issue becomes more sensitive. It becomes very crucial that counselor pays
equal respect to both the members of a couple, listens to both and remains neutral during
discussion. Effective couples counseling session helps in normalizing the feelings, reactions
and experiences of the couple. The couples counseling may differ according to the HIV status
of the couple. HIV discordance might affect couple relationship because of the immediate
psychosocial aspects like feeling of betrayal, anger and uncertainties in the HIV negative partner.
The partner might also get a feeling of great loss to his/her life. There could be worries about
the children’s future, worries about getting conceived, about the financial crisis, and the health
status of the infected partner. At the same time HIV infected partner might have a sense of
guilt of affecting the marital relationship, he/she might have fear of separation, and he/she
might have anguish of losing his position, love and respect in the family. He/she might have
worry about one’s own health status, and support from the spouse/partner. He/she might have
worries/concerns about partner notification. Safer sex behaviour within the couple greatly
depends on the disclosure and the relationship dynamics after disclosure within the couple.
The concordant couples might face different issues. There can be disagreements within the
couple about bringing the infection in the family which might lead to blaming each other. As
both partners suffer from ill health, there can be issues pertaining to care giving and support
from other family members which might be different than HIV discordant couples. Financial
issues might be more aggravated. Acceptance of HIV status might be more difficult in
concordant couples settings as both partner have to suffer from difficulties pertaining to their
health status and consequently their economic productivity. Anxieties, worries, and blaming
might create a situation where partners might get indulge into addictions, domestic violence or
withdrawal from family. Hence couples counseling proves to be very crucial strategy to help
couples to discuss openly their worries and concerns with each other. Counselor creates a
favorable environment to establish a dialogue between them, prevents blaming, and advises on
different ways to support each other, effectively tackling family issues, caring each other and
preventing HIV infection to the partner. The counselor helps to establish respect for HIV
infected partner and importance of uninfected partner. Counselor also helps to empower them
to deal with the emotional crisis situations.
Counseling Skills
As mentioned above, counseling is an interaction between two people aimed towards enhancing
client’s ability to take fair decision and adapt favorable changes.
Counseling is a science as well as an art. So to be a good counselor one has to understand a set of
techniques and to adapt some skills that would make the counseling service more effective. These skills also
can bring in the trust worthy relationship between a counselor and a client. The counseling skills can be
practiced by verbal communication and can be demonstrated to the client by non verbal communication
We can list out these skills as follows:

• Empathy : The term empathy should not be confused with the term Sympathy. Sympathy
has a shade of compassion towards the person in problem. Sympathy indicates power
relationship. But the term Empathy tries to bring the equality between a counselor and a
client. Empathy in other words can be explained as “Putting one’s feet into client’s shoes”.
When the counselor will try to empathize with the clients, meaning he/she will share his /her
emotions, and socio economic and environmental back ground, leading to more realistic
design of the behavioural change plans.
• Active Listening : Active listening is ‘listening for meaning’. It is a process in which, the
counselor listens more and talks less. But through this process counselor conveys empathy,
courage and emotional support to the client. By paraphrasing or summarizing the things the
client has reported, the counselor can know that whatever he/she has understood is correct.
By using some minor probes like, ‘is it so?’, ‘hmm’, ‘ok’, the counselor can convey the
message to the client that he/she is listening to the client and is genuinely interested in his
problem. Proper environment and ambience at the counseling place, body language, and proper
eye contacts are also important contributors to active listening.
• Acceptance : Acceptance is one more important quality of a good counselor. Acceptance
means accepting the client without any prejudices, beliefs and attitudes from the counselor’s
side but the client is accepted with all his/her attitudes, beliefs. Accepting the client without
criticism helps in designing the realistic behavioral change plan. Additionally the criticism or
preaching on moral behavior may bring inhibitions in the client-counselor relationship.
• Patience : Clients may ask same questions repeatedly. This happens due to limited or sometimes
wrong information about HIV/AIDS and sexuality. Counselor has to provide the same
information again and again. Sometimes it becomes difficult for the client to change his
sexual habits immediately and it may be required to schedule multiple counseling sessions.
The counselors need a lot of perseverance and continued evaluation of their effort and need
to repeatedly modify their strategies. Counselors should have a lot of patience in dealing
with such situations.
• Proper Questioning with Necessary Probes : While taking case history, a counselor needs to
ask questions to the client. Accurate risk assessment would require skillful probing. Questions
need to be open ended, and framed in simple language. The counselor has to take care of his/
her body language, facial expressions and voice tone while asking the questions. The tone
should be soft and neutral. Client should not feel that counselor is unnecessarily trying to enter
into his personal matters.
• Proper Use of Silence : It is not necessary that during the counseling sessions there should be
continuous discussion between clients and the counselor. There should be some silent slots in
between. This silence gives time to the client to think about what to express and how to
express it. Also it provides space to experience and internalize the feelings. It also gives freedom
to the client to decide whether or not to continue.
Tools Used in Counseling
a. Ambience of the Counseling Room : Counseling room should have a calm and quiet
environment where the client can feel secured and protected. At the same time he/she should
feel confident about the confidentiality. Privacy should be demonstrated to the client. The
room should be free from any kind of disturbance like outside noise, ringing telephones,
people disturbing in between. Total privacy should be observed at the time of counseling.
b. Diary : Counselor should maintain daily diary. He/she can put follow up dates, reminders, and
important issues with regards to the client to be followed up with other colleagues e.g. change
in medicine, referral made, follow up and feedbacks on referrals. In order to give complete
care, client should be followed up even if he exits the health care facility and goes into other
care. This kind of follow up help in gaining trust of the clients, making best possible referrals
in case of other clients, and getting enriched by own experience.
c. Counseling Notes : Detailed counseling notes help in identifying exact problem, providing
best possible intervention and counseling leading to desired counseling goals.
d. Education Material : Education material could be used to give correct scientific
information. The material may include general information flip chart, drug information,
and other facts. Using education material helps in restricting misconceptions and rumors.
Some video clips which explain HIV life cycle or drug action on HIV can be used for
creating audiovisual impact.
e. List of Referral Services : Counselor’s role does not end with the end of counseling session
but counselor should have a holistic approach encompassing health, family life, social life, and
empowerment of the client. Counselor should be able to provide possible solutions to client’s
worries and concerns. Clients concerns may not always be related to health, HIV or treatment.
Concerns and worries related to children and family and their future is one of the foremost
important concerns bothering them. The concerns can also be related to financial condition,
social life and children’s education. Counselor should be able to link them up with appropriate
service provider, government schemes and try to resolve their problem and empower them.
This is the way to demonstrate empathy instead of just being sympathetic towards their problem.
To be able to do so a counselor should be knowledgeable about government programs, NGO
schemes, and new policies. He/she should be able to establish linkages with such service
providers. A list of these referral services can help counselor in providing best possible services
to the clients.
Understand Your Limits
While providing services, at times, counselors become over confident. Counselors should
be cautious about their own ability and extent to which they can solve client’s problems.
They should always keep in mind that they cannot play a role of a doctor for the client.
Their role is to empower the client and not to make them dependent on counselors. Hence
counselors should be very open to understand their limits and should be able to tell the
clients the areas where they cannot help them.
Counseling Documentation
Counseling is a science because of the standardized processes and behavioral interventions to bring
in behavioural change. Behavioural change is a long process and hence documentation is very important
to document how behavioral change occurred and what were the triggers for risk behaviors and what
facilitated desired behavioural change. Appropriate documentation may provide help in better health care
or intervention. Documentation is required for a two reasons.
Deciding Counseling Strategy
Counselors handle many clients at a time. Every case is unique in itself and counseling is always
done with a client centered approach. Counselor cannot remember all cases, their problems, and strategies
implemented for them. Documentation of counseling process helps the counselor himself to establish a
link between the previous session and the current session and follow up in right direction. Counselor can
even write about family history and make use of this information at right time. This helps in building
rapport and gaining trust. E.g. “Your daughter’s marriage was nearing when you came last time. How
was the marriage?” Documentation may helps in guiding health care also. E.g. in case of adherence
counseling, counselor can document missed pills and reasons for missing pills. Clients may inform
symptoms to counselors and not to doctors because of power relationship with doctors. In this case
counseling notes can provide clues for medication changes or other health care requirements.
Accountability
Documentation helps in demonstrating that the counseling was done in non coercive and conducive,
supportive environment and appropriate decisions were made based on discussions with the client.
Documentation especially becomes important in case of informed consent process, initiation of ART,
discussion regarding extreme emotional stresses like suicidal ideation, depression, major decisions like
breaking relationships. Sometimes these records gain importance in case of medico legal cases. People
with HIV disease may be involved with the health care facility for longer time period; many become
defaulter and again enter into care after some time period. They often shift to other facilities. The
appropriate documentation helps in sharing behavioural histories if required for health care. The records
also help counselors when the client or his relatives raise grievances during the counseling care or after
long time gap.
Contents of well documented notes could be illustrated below:
1. Detailed case history:
a. This includes education, family background, family members, and their relation with the
client, biological as well as at emotional level.
b. It may include occupational details like type of work, professional relations with colleagues
and superiors also.
c. If available, the history of past medical records and health problems.
d. History of any past traumatic condition and the way the client resolved it.
2. Documentation of counseling:
a. Includes problem description in short.
b. Points discussed with the participant.
c. Solutions reached at.
d. Follow up items till next visit.
The documentation of counseling procedures can be done by using some formats:
1. Narrative notes
2. SOAP : Subjective, Objective, Assessment and Plan.
3. DAP : Data, Assessment and Plan.
4. IEP : Individual Education Program.
5. FOR : Functional Outcome Reporting
1. Narrative Notes : Generally narrative notes are widely used format in counseling in HIV/
AIDS. This is a full description of a case as well as counselor’s assessment of the problems
and intervention strategies. These notes should document ultimate counseling goals for the
case as well as short term behavioural goals. This is a live document till that case is under care.
Counselor should finally write the outcome and strategy that worked best in this scenario.
This note should be logical in sequence, concise and clear and should be written immediately
after the counseling session is over.
2. SOAP (Cameron & Turtle-song, 2002)
Subjective : Subjective data includes the information given by the client himself/herself,
perception of the client, his goals, and action plans. This documentation can be done in the
form of quotes by the client. E.g. “I think the condom ruptured during intercourse.” Or “I may
have missed pills on weekends”. Counselor’s own observation, information given by the
significant members from client’s family or friend can also be documented as a subjective part
of the document. Review of the action items at previous visit and follow up of that can also be
documented here.
Objective : Documentation of objective data is comparatively less complicated and can be
easily interpreted. Laboratory reports of the client, reports of psychological tests, if done, pill
counts for the clients who are on anti HIV treatment are few examples of an objective data.
Notes written by another counselor are also a part of objective documentation. Counselor can
write own observations but he/she must take care that the client should not be labeled by any
negative connotation like lethargic, rude or troublesome. Rather the statements like “she was
speaking less than her previous visits” can be written. Counselor should only make a note of
the things that were seen, touched, smelled, measured or heard. What is perceived, felt,
seemed by the counselor is not the part of objective documentation.
Assessment : This is the section to note what the person felt as a counselor. The counselor’s
clinical observations pertaining to the client, his problem and his ability to come out of the
situation are documented in the ‘Assessment’ part of the document. This is the most important
part of the document that is often read by the other health care providers of the client. Therefore
the counselor must ensure that the ‘Assessment’ is true reflection of previous two sections and
the ‘assessment’ is adequately supported by appropriate evidences. For new counselors, it is
always recommended to discuss the diagnosis of the client with the colleagues or seniors
before documenting it.
Plan : This is another important part of the documentation. This is a parameter that measures
the efficacy of counselor’s intervention. Plan consists of the date of next appointment,
action plan till the next appointment, follow up items that are to be reviewed at next visit and
a short description of the intervention that is provided to the client, and noting of any other
reference if provided.
Sample of the Document following SOAP Format:

Case: Suresh is taking ART drugs since last 3 years. In these 3 years his adherence is good
and ART is working well for him. But today it is noticed that he has missed few pills of ART
drugs. He has missed the pills because he has changed his job and now he has to work in shifts
and sometimes has to travel in the city.
Notes:
Subjective: Client S has come for his regular follow up at the center. Today he reported that
he may have missed many ART doses in last month. He said he has changed his job now. He
has to travel a lot and also he works in shifts and his sleeping timings are not fixed. He has a
fear that the intake of ART drugs may cause some accident or mishap in his life.
Objective: When participant was taken on ART, initially he had experienced dizziness,
heaviness in head, and excessive sleep as a side effect of Efavirenz. He used to get weird
dreams and also had negative thoughts in his mind. Therefore his ART was changed.
Efavirenz was replaced with another drug.
Pill count was done by pharmacist and client’s diary also show that he has missed 6 doses of
ART drugs in last month which is less than 95% and is not adequate.
Assessment: Counselor feels that as a result of previous experience with Efavirenz, he thinks
that all the ART drugs will cause problem to him up to some extent. He is more worried
because now he has to travel and also he does not have fixed sleeping times. He may be
thinking that if he has the similar side effects like excessive sleep or dizziness again then he
may meet with an accident. Therefore whenever he had a night shift he was avoiding taking
ART drugs.
He was explained about the side effects of the drugs he was taking currently and of Efavirenz
also. It was explained that the present drugs would not produce side effect that would affect
his sleeping habits.
Plan: He was called again after 1 month. Also told him that he can come to the center, if he
feels that he is suffering from any such complaint again. Participant agreed that he will take
the medicines on time and contact the center on emergency.
Monitoring and Evaluation of Counseling Services

Over the years counseling may become monotonous, counselors may get burnt out, it may also
become just health education sessions. With regular monitoring, we are able to identify training and skill
building needs of the counselors, and whether counseling services are effective for betterment of the
quality of life of the individuals.
Monitoring of laboratory procedures, and data collection are well known, however monitoring of
counseling is much neglected area so far. This might be because counseling is mostly a verbal
communication and a practice of documenting is rarely followed. There are no objective parameters/
indicators on which it can be assessed. There are no measurable outcomes as they are mostly behavioural
and behavioural change is a process and it takes long time period to obtain results. Hence the counseling
facilities need to develop mechanisms for monitoring of counseling services. Monitoring can be done by
external agency or a counseling supervisor (experienced counselor), hence forth referred as supervisor.
Certain mechanisms could be illustrated as follows:
• Direct Observation : A supervisor can attend the counseling session with permission of the
clients. He can make his/her observation notes regarding counseling sessions. These observation
notes could be analyzed for specific counselors in order to identify strengths and weaknesses.
The observation can be done with the help of structured checklist or the observer could write
narrative notes. In narrative notes observer could write about what was observed, which
procedures were inadequate and what are the counselor’s strengths. After specific number of
observations, supervisor could do a debriefing to specific counselors or it could be general
debriefing for all the counselors in the form of training.
• Exit Interviews with the Clients : A questionnaire could be developed and the feedback or
attitudinal change, knowledge gain of the client could be elicited with exit interview. A random
number of exit interviews could be conducted. This can be a periodic process.
• Review of Counseling Documentation : Supervisors can review counseling notes for
completeness, detailed narration about client’s problem, how the counseling goals are prioritized,
and how strategies are suggested. Supervisors can check whether the strategies are correct.
Supervisor can give the same case at the follow up to another counselor and inter counselor
agreement could be checked based on counseling notes.
• Counselor’s Assessment : Counselor’s knowledge assessment can be done on periodic
basis. Their knowledge on new developments in the field of HIV like treatment guidelines and
new research can be assessed. They can be given case work and asked to develop a strategy
for counseling.
• Measuring Behavioral Change Indicators : This method requires a built in data collection
process. Periodically indicators like total adherence, condom use and percentage of HIV
disclosure, client retention, knowledge gain, and attitudinal change can be measured.
Improvement in these indicators can be a surrogate marker of effectiveness of counseling
process at the facility. However we cannot assess individual performance by this method.
These methods could be applied for monitoring in isolation or by combination. One can adopt
different methods for different rounds of monitoring and evaluation of the counselors. After one monitoring
round, supervisors should find out persons specific strengths and weakness. He/she can plan for skill
building activities. The first step of skill building should be debriefing the counselors and making them
aware of their short falls. Skill building can be at individual level by providing more training by making
the counselor attend counseling sessions by experienced counselors. It can be held as class room
training. It can be in the form of case discussions and sharing experiences. Monitoring and evaluation
should be built in as a Standard Operative Procedure (SOP).
Skill Application
Let’s now take a case and discuss how the issues were resolved.
Case I : Babu was a labourer and staying in a slum with his wife, two sons, one daughter and
mother. His wife and mother were housemaids. Babu’s mother was left by her husband
when she was pregnant. She then started working as a house maid. She gave birth to
Babu and decided that she will earn and put Babu in school so that he becomes
capable to get a good job and lead a better life. Babu attended school till 10th class
and left the school. However he kept earning as a labourer. He then got married and
settled in his life. Babu’s wife also wanted to provide good education to her children
and make them able to go into white collared job. They put them in good English
medium school and were able to manage as all the three adults in the family were
working. Because of company and peers Babu had in slums, he had habit of drinking
in night. Sometimes under the influence of liquor he used to lose control and used to
beat his wife. But this was occasional and his wife did not have many concerns about
it. Once, a NGO conducted women’s health camp in their slum. Babu’s wife was
diagnosed of having an STI. The counselor advised partner referral and testing for
HIV at ICTC. In a test Babu was diagnosed as HIV positive and his wife turned out to
be HIV negative. Babu went into a phase of denial. He could not face his mother. After
that he started blaming his wife. He started drinking a lot. In the rage of alcohol he
poured kerosene on his wife and tried to burn her, but then his mother intervened and
saved her life. He started beating his sons. He loved his daughter a lot. He never used
to beat her even though he was so upset. He was being counseled but nothing helped.
He started going out from home for 8-10 days. He used to return when his money got
over. He subjected his wife to forceful sexual intercourse against her will. He was a
defaulter at health care facility. They advised him to initiate ART but he did not show
much interest. As it was health care facilities duty to bring all needy people on treatment,
they visited his house in order to get him on treatment. His wife and mother narrated
his behaviour to the counselor and said that they would not take his responsibility and
would not take care if he develops side effects. They were fed up of his behaviour. It
will be health care facilities responsibility if anything happens to his health. Now it
was a dilemma in front of a counselor.
Steps taken to resolve the problem
1. Babu’s case history was reviewed. It was found that he had multiple partners and used to have
sexual intercourse with other partners only when he had liquor. It was also mentioned that he
was not very curious about knowing his test result. He underwent a test because his doctor
had advised him so.
Action : His risk assessment was again done. He was explained about the risk that he would
have because of improper condom use under the influence of alcohol. He understood the risk
and the reason behind his STIs and HIV infection.
2. It was noticed that the habit of alcohol consumptions, irresponsible behaviour and domestic
violence with wife worsened after his HIV diagnosis. This might have been probably due to
denial and anger, feeling of vulnerability and feeling of taking revenge. It was also noticed that
he loved his daughter very much.
Action : He was counseled on how much his family loved him. He was told that he could be
an asset to family by earning money, behaving responsibly with family. He was sensitized
about what image he would have in front of his daughter if he continues his behaviour. How
much efforts his mother had taken to bring him up and she would be happy seeing her son
healthy and happy. It would be very important to shape lives of his children so that they would
not suffer from poverty and for their upbringing he needed to be healthy and productive.
Ultimately he agreed to initiate ART and promised good adherence. However he was kept in
follow up for sustained behavioural change. Hence in this case although alcohol consumption
appeared to be great problem it became secondary after exploring this case thoroughly.
Case II : A 35 year old man came to the clinic with HIV positive report. He was not willing to
share his report with his wife and also was not ready to test his wife for HIV. He was
worried that wife would leave him after hearing about his HIV status. He was also
concerned about possibility of transmitting the disease to his wife.
Steps taken by counselor :
1. Asked about the family, number of children, financial dependency of wife on him as well as
how much emotional attachment she had with him.
2. After knowing the background, counselor concluded that there was a rarest possibility that his
wife would leave him. He was counseled regarding risk of HIV transmission to his wife.
3. Explained about preventive measures like condom use.
4. Then the counseling was done regarding how he would talk to his wife regarding condom use.
5. He was given time to collect the courage for disclosure to his wife with the condition that
either he would be abstinent or he would adopt safer sex practice till he discloses his report to
his wife.
6. He was also assured that counselors could also help him disclosing his status if he wished so.
After all these efforts, the husband disclosed his HIV report to his wife. No issues were raised after that.
CONCLUSION
Counseling, if done effectively and scientifically, can play a vital role in changing the lives of the
people living with HIV/AIDS. To be the best counselor, one should inculcate non judgmental attitude,
demonstrate empathy, verbal and non verbal skills. A good counselor should be equipped with up to date
knowledge about the disease, government policies and programs and trained in using counseling techniques
and documentation. With experience and a will power to be student of counseling school, one can be
excellent empathetic counselor. One should always remember that every case is a new challenge and it
is going to teach you new skills.
REFERENCES
Bentley, M.E., Spratt, K., Shepherd, M.E., Gangakhedkar, R.R., Thilikavathi, S., Bollinger, R.C., & Mehendale,
S.M. (1998). HIV testing and counseling among men attending sexually transmitted disease clinics in Pune,
India: Changes in condom use and sexual behavior over time. AIDS, 12(14), 1869-77.
Cameron, S. &Turtle-Song, I. (2002). Learning to write case notes using SOAP format. Journal of Counseling
and Development, 80, 286-292.
Coates, T.J., & Lo, B. (1990). Counseling patients seropositive for Human Immunodeficiency Virus-An approach
for medical practice. West J Med, 153, 629-634.
NACO. http://www.nacoonline.org/National_AIDS_Control_Program/Services_for_Prevention/
Integrated_Counselling_and_Testing__ICT/. Accessed online on 30 March 2012.
NACO. http://www.nacoonline.org/About_NACO/. Accessed online on 30 March 2012.
Joglekar, N., Paranjape, R., Jain, R., Rahane, G., Potdar, R., Reddy, K.S., & Sahay, S. (2011). Barriers to ART
adherence and follow ups among patients attending ART Centres in Maharashtra, India. Indian J Med Res,
134(6), 954.
Kaleeba, N., Kalibala, S., Kaseje, M., Ssebbanja, P., Anderson, S., Van Praag, E., Tembo, G., & Katabira, E. (1997).
Participatory evaluation of counseling, medical and social services of the AIDS support organization
(TASO) in Uganda. AIDS Care, 9(1), 13-26.
Krabbendam, A.A., Kuijper, B., Wolffers, I.N., & Drew, R. (1998). The impact of counseling on HIV-infected
women in Zimbabwe. AIDS Care, 10 (1), S25-37.
Kumarasamy, N., Safren, S.A., Raminani, S.R., Pickard, R., James, R., Krishnan, A.K., Solomon, S., & Mayer, K.H.
(2005). Barriers and facilitators to Antiretroviral medication adherence among patients with HIV in Chennai,
India: A Qualitative Study. AIDS Patient Care STDs, 19(8), 526-537.
Lipovsek, V., Mukherjee, A., Navin, D., Marjara, P., Sharma, A., & Roy, K. P. (2010). Increases in self-reported
consistent condom use among male clients of female sex workers following exposure to an integrated
behaviour change programme in four states in Southern India. Sex Transm Infect, 86(1), 25-32.
Mugavero, M., Ostermann, J., Whetten, K., Leserman, J., Swartz, M., Stangl, D., & Thielman, N. (2006). Barriers
to Antiretroviral adherence: The importance of depression, abuse, and other traumatic events. AIDS
Patient Care STDs, 20(6), 418-428.
Murray, L.K., Semrau, K., McCurley, E., Thea, D.M., Scott, N., Mwiya, M., Kankasa, C., Bass, J., & Bolton, P.
(2009). Barriers to acceptance and adherence of Antiretroviral Therapy in urban Zambian women: A qualitative
study. AIDS Care, 21(1), 78-86.
National AIDS Control Organisation. (2007). Voluntary Counseling & Testing Operational Guidelines, Ministry
of Health and Family Welfare, Government of India.
Nyanzi-Wakholi, B., Lara, A.M., Watera, C., Munderi, P., Gilks, C., & Grosskurth, H. (2009). The role of HIV
testing, counseling, and treatment in coping with HIV/AIDS in Uganda: A qualitative analysis. AIDS Care,
21(7), 903.
Schlebusch, L., & Govender, R.D. (2012). Age, gender and suicidal ideation following voluntary HIV counseling
and testing. Int J Environ Res Public Health, 9(2), 521-530.
Shet, A., DeCosta, A., Heylen, E., Shastri, S., Chandy, S., & Ekstrand, M. (2011). High rates of adherence and
treatment success in a public and public-private HIV clinic in India: Potential benefits of standardized
national care delivery systems. BMC Health Serv Res, 11, 277.
Note: The scenarios in the write up are imaginary and not the real life ones. The names put in the
scenarios are imaginary.
Acknowledgements: The authors thank Dr. R.R. Ganagakhekar, Scientist-F, NARI for his valuable
suggestions in making the article comprehensive. The authors also thank Dr. R.S. Paranjape Director
NARI for his continuous support and encouragement.
15
Health Care Seeking Behavior of
People Living with HIV/AIDS
– Manmeet Kaur & Mamta Gupta
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
ABSTRACT
Interdisciplinary contributions from sociology, anthropology, psychology and economics have
resulted in sensitivity toward epidemiological transition from communicable to non
communicable diseases and preference for integrated mixed method approach over purely
qualitative or quantitative methods in the area of public health. The present study used
mixed methods approach to understand treatment seeking behavior and delay in the same
among people living with HIV/AIDS. The study collected a sample size of 120 by visiting the
ART Center continuously for ten days and interviewing every third patient who were aged 18
years and above and been taking ART at least for the past one month. Valuable information
was obtained when qualitative data supplemented the quantitative data about people’s
reactions at the onset of symptoms, resistance to diagnosis and reasons for delay in
approaching public health facilities in spite of it being free. Mixed method approach is thus
useful in providing a holistic view of health behavior.
INTRODUCTION
Public health has mostly been recognized with epidemiology; which establishes cause and effect
relationship in disease, provides disease burden in terms of prevalence and incidence of diseases and
further suggesting their prevention and control measures using positive science approach. The disease
control measures have been dealt by the clinical medicine using experimental studies and randomized
controlled trials (Detels & Breslow, 2009). It could not move out from “a pill for every ill”. Contributions
of other social sciences like sociology, anthropology, psychology and economics to public health has
grown in the recent past during the epidemiological transition and shift from communicable to non
communicable diseases (Hart, 2009).
Public health in the recent past has witnessed a paradigm shift; the focus is more on understanding
health behavior of people and how risk behavior can be addressed to reduce harm (Porter, 2006). Use of
qualitative methods along with quantitative has become important in public health research. A mixed
method approach in public health research is taking shape (Creswell, Fetters & Ivankova, 2004; Morgan,
1998). Present paper is an attempt to test the hypothesis that mixed methods approach is no different
from using qualitative and quantitative approaches while answering the research questions such as why
people living with HIV/AIDS adhere to treatment.
Out of 2.4 million PLHA, only 50% knew about their status (NACO Annual Report, 2010) (National
AIDS Control Organization, 2009) and 3, 55,329 people were receiving ART from the public sector by
August, 2010 (NACO, Aug.2010). As per NACO’s treatment protocol for starting ART, this number
represents only half of the adults estimated to be in need of antiretroviral treatment (UNGASS, 2010).
The above figures are showing unabridged gap between availability of health services and health service
utilization persisting till date. There are many other factors operating at individual and societal level
which constitutes the health care seeking behavior (Green & Potvin, 2009). The specific objectives of
the study when planned were to determine the health care seeking pattern of HIV/AIDS cases belonging
to different socio- economic groups and to explore and explain the extent of delays in seeking diagnosis
and treatment among People living with HIV/AIDS (PLHA). This article however, focuses on explaining
health seeking behavior of PLHA using mixed method approach. The discussion is surrounded by the
methodological issues on studying treatment seeking behavior. The questions which we are trying to
answer through this paper are why and how mixed methods have been used and quantitative research
approaches and benefits of mixed method approach to public health research.
METHODS
A cross-sectional study was carried out in the Union Territory; Chandigarh from May 2009 to
Dec 2010 using the Integrated mixed methods approach (Castro et al., 2010). People living with HIV/
AIDS aged 18 years or above seeking treatment for past at least one month from the Anti Retroviral
Treatment (ART) Center at Post Graduate Institute of Medical Education and Research, Chandigarh
was enrolled in this study.
Following mixed method design approach, at the formulation stage, goal of the study, study objectives,
rational for selecting the Study design, rationale/ purpose of mixing methods and determining research
question(s) were carried out. At the planning stage we selected identical sampling design meaning there
by, exactly the same sample members participating in both qualitative and quantitative phases of the
study and type of mixed methods research design were used (Collins, Onwuegbuzie & Sutton, 2006).
For this study sample size was calculated considering adherence to ART treatment which was estimated
to be around 80% (Sarna et al., 2008). Using the following formula at 10% precision, the sample size
was estimated to be 64.
N = 4pq/d2, where p = 80%, q = 20% and d = 10
N = 4*80*20/10*10= 64
It was decided to take equal number of persons living below poverty line and those who are living
above on the basis of their per capita monthly income. The sampling scheme was developed after having
two informal visits to ART clinic. It was observed that on an average 3 new and 30 old HIV/AIDS cases
were visiting the clinic everyday for treatment. Therefore, the clinic was visited continuously for ten
days, and every third patient was interviewed. Using this sampling scheme within the time frame of 10
days resulted into 90 cases below poverty line and 30 cases above the poverty line.
Health Care Seeking Behavior of People Living with HIV/AIDS 209
Qualitative and quantitative data were to be collected concurrently rather than sequentially, because
the next visit of same patient to ART center was scheduled in the next month and it was not possible to
follow them up in the next visit.
The first question of the interview schedule was kept open ended to collect the information regarding
the history of illness of the respondents including initial signs and symptoms, various reasons for
seeking health care from different places, reasons for delay to seek care, issues regarding stigma,
discrimination. The closed ended questions were regarding the socio- economic and demographic status
of the respondents, duration of illness, place of seeking health care, time lag in diagnosis and treatment,
reasons of delay. Accordingly, equal priority to both qualitative and quantitative information was given
and the tool for data collection had closed ended question followed by an open ended question to seek
answers to where, why, and how.
The interview schedule developed in English was translated to local language Hindi. Proper care
was taken to frame the questions properly in the local idiom. The pretest results were not included in the
main study. The interviewer guided the respondents by probing and providing appropriate verbal and
non-verbal feedback. After ten pre-test interviews, the interviewer learned what worked in the questionnaire
and what needed rewording. After pre-testing, changes were incorporated in the interview schedule.
Interviewing the people living with HIV/AIDS (PLHA) involves confidentiality and privacy, therefore,
prior permission from National AIDS Control Organization, India (NACO), State AIDS Control Society
(SACS), Chandigarh and ART center, PGIMER, Chandigarh was sought. The informed consent protocol
was read by the researcher to each participant and a written permission was taken.
At the implementation stage which involved actual data collection, data analysis, data validation and
data interpretation using mixed methods strategy.
For carrying out the present study, all possible measures to ensure privacy and confidentiality
were taken during the interview. SMO/MO explained the purpose of the study to the eligible patient
and if the patient agreed to participate, information was communicated to the investigator. The
interview was carried out in a separate room to ensure privacy. Descriptive analysis was done
using SPSS-15. Bivariate analysis was also carried out to find the association of exposure and
outcome variables. Chi- square test was used to find significance of association. Narratives were
analyzed using themes and sub themes. The term ‘most of the respondents’ correspond to 50% and
above of the respondents, ‘a considerable number’ corresponds to 25% to 50% and ‘a few’
corresponding to less than 25% respondents.
To determine the socio-economic status, Aggarwal’s socio-economic scale was used on the sampled
individuals. This scale measures the socio-economic status of the family. It is neither based on the status
of individual nor on the status of the head of the family. It is applicable both for urban as well as rural
families (Kumar, Shekhar, Kumar & Kundu, 2007; Prasad, 1970).
Different steps in conducting this study have been depicted in Figure 1 below. This figure has been
adapted from an earlier version that was published in the journal, Cultural Diversity and Ethnic Minority
Psychology (Castro & Coe, 2007).
Qualitative Textual Evidence
Rationale
for using Interpre- Integra
Stages Design Collection Conversion Analysis
mixed tation -tion
methods
Research Significance Open ended Written The mes and Thematic Qualitative Integrat
Question enhancement questions records of subthemes analysis information ive
narratives explained analysis
Construct and
Narratives supported
Health care seeking the
behavior, delay in quantitative
diagnosis and Data findings.
treatment and Also
reasons for the same Socio economic Encircling Codes, O.P. Descriptive instrumental
scale, closed the Aggarwal’s and in result
. ended questions responses socioecono bivariate triangulation
regarding type of given by mic scale analysis
health provider respon-
consulted dents
initially for
treatment, period
of delay for
diagnosis and
treatment, etc
Quantitative Numeric Evidence
Figure 1: Qualitative Textual Evidence
RESULTS
Out of a total of 120 PLHA seeking treatment from ART center interviewed, 65% of the respondents
were males and rest females, 67.5% respondents belonged to lower middle class, 23.3% were from the
poor class and rest belonged to upper middle socioeconomic status.
To find out the mean delay in diagnosis and treatment, we captured the additional consultancies
sought by the respondents to understand the treatment seeking behaviour. Before coming to ART center,
all the respondents had 1-15 additional consultancies to various health providers leading to a considerable
delay in seeking proper treatment. Various health providers included traditional healers (Registered Medical
Practitioners, Hakim or vaid) and qualified medical practitioners (both public and private health providers).
From the onset of symptoms to the diagnosis the mean delay was found to be 2.5 years and from
diagnosis till the start of ART treatment there was a delay of 2 years, hence a total mean delay of 4.5
years from the onset of symptoms till the start of appropriate treatment.
Four aspects of delay were identified based on both qualitative and quantitative information.
1. Delay in diagnosis from patient’s side
2. Delay in diagnosis from provider’s side
3. Delay in treatment from patient’s side
4. Delay in treatment from provider’s side
Various reasons were identified corresponding to these four delay typologies. Reasons for delay in
seeking diagnosis since onset of symptoms from the patient’s aspect were unawareness regarding the
symptomatology and risk factors for HIV/ AIDS, perception about the illness to be minor and not
requiring treatment, financial inabilities and gender influencing the decision making power among women.
Females were not encouraged to go doctor unless the condition worsened because of lack of decision
making power and financial control.
From the provider’s aspect it included, in some cases private doctor did the test without consent
and did not tell the report to the patient, lack of awareness regarding diagnostic & treatment facilities
among traditional and private providers.
Reasons identified for seeking treatment after diagnosis from patient’s side were individual’s attitude
that they could sustain without treatment, stigma, economic reasons, overhead expenses like boarding-
lodging expenses and expenses of accompanying person, lack of awareness regarding treatment facilities
in Public sector and gender. In case of many women who were aware of their husband’s status and
were symptomatic for a long time could not visit a qualified doctor because in laws did not allow them.
From the provider’s side included Lack of awareness regarding treatment facilities in public sector and
lack of proper referral by the community healers.
Table 1 below shows how integrative mixed methods approach enriched and supplemented the
information obtained from quantitative data and qualitative data.
Table1: Results of Integrative Mixed Methods Approach to
Explain Delay in Health Seeking Behavior
Quantitative
Construct Qualitative Results Conclusive Result
Results
Profile of These could There were nine pregnant females who were Qualitative information enriched the
respondents provide results otherwise asymptomatic but were tested information related to the profile of
on the socio positive during Antenatal checkups and 10 respondents and reflected upon the
demographic males who had come to the government facility benefits of programmatic
and socio for TB diagnosis. Because of HIV/ TB interventions.
economic collaborative services these patients were
profile. referred to ICTC services
Delay in Mean delay of Reasons for delay from patient’s aspect: To reduce the mean delay in
seeking 2.5 years from Lack of awareness regarding symptomatology diagnosis, related factors need to be
diagnostic the onset of and risk factors of the disease, multiple addressed.
facility since symptoms to consultations, perception regarding the illness
onset of diagnosis due to be minor and not requiring treatment,
symptoms to multiple financial implications and gender disparities.
consultations. Reasons for delay from provider’s aspect: In
some cases private doctor did the test without
consent and did not tell the report to the
patient, lack of awareness regarding diagnostic
& treatment facilities among traditional and
private providers and proper referral.
Delay in Mean delay of Reasons for delay from patient’s aspect: To reduce the mean delay in
seeking 2 years since Individual’s attitude that they could sustain treatment, related factors need to be
treatment since diagnosis till without treatment, stigma, economic reasons, addressed.
diagnosis seeking overhead expenses like boarding- lodging
treatment expenses and expenses of accompanying
person, lack of awareness regarding treatment
facilities in Public sector, gender.
Reasons for delay from provider’s aspect:
Lack of awareness regarding treatment
facilities in public sector and lack of proper
referral by the traditional and private providers.
Association of No association Gender has been found to be one of the factors Although gender is not statistically
age, gender significant. leading to the delay in diagnosis. significant with delay in diagnosis but
and SES with the qualitative information is
delay in supporting the role of gender disparity
diagnosis for this construct.
Association of No association Gender has been found to be one of the factors Although gender is not statistically
age, gender significant leading to the delay in seeking treatment. With significant with delay in treatment but
and SES with except for age. age the willingness to live more increases, the qualitative information is
delay in thereby, they are willing to seek treatment from supporting the role of gender disparity
treatment since different far off places like Kerala also. for this construct. And significant
diagnosis association of age with delay in
seeking treatment was well supported
by qualitative analysis.
Stigma and Could not In case of females, when the family members Additional information from
discrimination provide any came to know about their positive HIV/AIDS quantitative analysis
information. status, they did not allow them to talk to their
children, to enter the kitchen and even touch
the utensils.
DISCUSSION
Mixed methods research is not new. It has moved through formative period (1959 to 1979) followed
up by paradigm debate period (1985 to 1997), procedural development period (1998 to 2000) followed
by the current stage of advocacy as separate design period (Tashakkori & Teddlie, 1998). However it
uses has been limited especially in the sciences such as public health. The results of this study suggest
that use of mixed methods provided insight into health behavior of people and reasons for that behavior.
It helped in filling the knowledge gaps that were emerging while asking closed ended questions.
Most of the studies in public health literature have been carried out either using a pure qualitative,
pure quantitative or a mix of qualitative and quantitative, a mix of quantitative methods or a mix of
qualitative methods. Mixed methods have been commonly used in the form of triangulation may it be
data triangulation, investigator triangulation, theory triangulation or methodological triangulation as quoted
by Denzin (Denzin, 1978; Denzin & Lincoln, 2005). Initially the mixed methods design was used but in
separated components. Present study is giving data triangulation.
There were different components included in the present study design, data collection and data
analysis. Accordingly, it was classified under integrated and not sequential or concurrent study designs.
The sub categorization was dependent upon the priority or the dominance by either (qualitative or
quantitative) of the two (Tashakkori & Teddlie, 2003). For this study there was no prioritization. Both
quantitative and qualitative were given equal priority keeping in mind the relevance of the information on
treatment seeking behavior.
Second classification has been based on data collection, while third classification involved deciding
the point at which data analysis and integration occurred. In literature, these classifications have not
been considered as pure mixed methods approach although the mixing strategies have been used (Johnson,
Onwuegbuzie & Turner, 2007). In 2010 Castro et al., has put forward integrated mixed methods not as
a research design but as a research approach which tends to concurrently incorporate both qualitative
and quantitative components at all the stages of research process. For the present study none of these
classifications were used and integrated mixed method was followed throughout the implementation of
research design. The present study has tried to demonstrate the application of mixed methods approach
as conceptualized by Castro et. al., (2010).
Collins et. al., referred to three important stages first, the formulation stage, followed by planning
stage and finally the implementation. Although the steps involved in mixed methods approach look
identical to those used for other approaches but technically and conceptually these differ a lot. For the
present study we have followed these stages. It helped in putting results together without manipulating
what needs to be expressed at which place. The results flow through constructs to conclusive results
derived from quantitative and qualitative data.
Four rationales have been mentioned in literature for conducting mixed methods research depending
upon aim of the study. These rationales are participant enrichment, instrument fidelity, and treatment
integrity and significance enhancement. We identified significance enhancement as our rationale for
choosing mixed method approach was to enhance researcher’s interpretation of results which also
defined our purpose to use this approach for the present study. Our study makes it clear that both
qualitative and quantitative information not only supplemented each other but also enriched the
interpretation of results.
Data collection could have been sequential, but in that case one type of data would have supplemented
the other and required a second visit to the respondents. This could address the issue of validity and
generalizability which could not have been addressed by either qualitative or quantitative study alone
(Onwuegbuzie & Johnson, 2006).
In our study we wanted to determine the delay in health care seeking behavior of PLHA. This
behavior could have been determined by simply using the qualitative approach or a quantitative approach.
However, health care seeking behavior has been defined as a complex behavior of an individual which
is influenced by a web of factors, further related to the place from where people seek health services,
starting from the individual’s as well as social perception of disease to the availability, accessibility
and utilization of health services (Kamat & Nichter, 1998; Mahal, Yazbeck, Peters & Ramana, 2001).
The pure qualitative study would have addressed all the factors in the above definition but would not
have been able to quantify the magnitude. On the other hand, quantitative study would have provided
us with the numbers and percentages on how many behaved the way they behaved but could not have
answered why, how and reasons for the same. To address both the aspects and proxy for health care
seeking behavior, we asked the respondents about the place of their first consultation after the onset
of signs and symptoms. This was followed by an open ended question seeking the reason for the
same so as to address the behavior. Quantitative data could provide us the information regarding the
mean delay periods but the qualitative data enriched the findings by giving explanation to the delay.
These reasons may be addressed in future to make the services more user friendly and to cut short
the delay period.
CONCLUSIONS
In an attempt to integrate the two well established approaches, we learnt that this third approach of
integrative mixed methods can answer the unanswered questions related to gaps in health service
availability and utilization of health services from both providers as well as client’s perspective. Mixed
method approach is useful for public health as it provides a holistic view of health behavior of people
that can promote health.
REFERENCES
Castro, F. G., & Coe, K. (2007). Traditions and alcohol use: A mixed methods analysis. Cultural Diversity and
Ethnic Minority Psychology, 13, 269-284.
Castro, F.G., Kellison, J.G., Boyd, S.J., & Kopak, A. (2010). A methodology for conducting integrative mixed
methods research and data analyses. Journal of Mixed Methods Research, 4(4), 342-360.
Collins, K.M.T., Onwuegbuzie, A.J., & Sutton, I.L. (2006). A model incorporating the rationale and purpose for
conducting mixed-methods research in special education and beyond. Learning Disabilities: A
Contemporary Journal, 4(1), 67–100.
Creswell, J.W., Fetters, M. D., & Ivankova, N. V. (2004). Designing a mixed methods study in primary care.
Annals of Family Medicine, 2, 7–12.
Detels, R., & Breslow, L. (2009). Current scope and concerns in public health (5th ed.). USA: Oxford
University Press.
Denzin, N. K. (1978). The research act: A theoretical introduction to sociological methods. New York: Praeger.
Denzin, N. K., & Lincoln, Y. S. (2005). Introduction: The discipline and practice of qualitative research. In N. K.
Denzin & Y. S. Lincoln (Eds.), The Sage Handbook of Qualitative Research (3rd ed., pp. 1-28).Thousand
Oaks, CA: Sage
Green, L.W. & Potvin, L. (2009). Education, health promotion, and social and lifestyle determinants of health
and disease (5th ed.). USA: Oxford University Press.
Hart, N. (2009). Social, economic and cultural environment and human health (5th ed.). USA: Oxford
University Press.
Johnson, R.B., Onwuegbuzie, A.J., & Turner, L.A. (2007). Toward a definition of mixed methods research.
Journal of Mixed Methods Research, 1(2), 112-133.
Kamat, V. R., & Nichter, M. (1998). Pharmacies, self-medication and pharmaceutical marketing in Bombay, India.
Social Science & Medicine, 47, 779-794.
Kumar, N., Shekhar, C., Kumar, P., & Kundu, A.S. (2007). Kuppuswamy’s socioeconomic status scale- updating
for 2007. The Indian Journal of Pediatrics, 74, 1131-1132.
Mahal, A., Yazbeck, A. S., Peters, D. H., & Ramana, G. N. V. (2001). The poor and health service use in India.
World Bank Report, Washington DC.
Morgan, D. L. (1998). Practical strategies for combining qualitative and quantitative methods: Applications to
health research. Qualitative Health Research, 3, 362–376.
National AIDS Control Organization. (2010). Annual Report 2009- 10. Ministry of Health and Family
Welfare. India.
National AIDS Control Organization. (2010, Aug). People alive and on ART August 2010. Ministry of Health and
Family Welfare. India. Available from. www.nacoonline.org/Quick_Links/.../Patients_alive_and_on_ART/
[March 10, 2011].
Onwuegbuzie, A.J., & Johnson, R.B. (2006). The validity issue in mixed research. Research in the Schools,
13(1), 48-63.
Porter, D. (2006). How did social medicine evolve, and where is it heading? PLoS Medicine, 10 ( 3), e399.
Prasad, B.G. (1970). Changes proposed in social classification of Indian Families. Journal of Indian Medical
Association, 55, 198-199.
Sarna, A., Pujari, S., Sengar, A.S., Garg, R., Gupta, I., & Dam, I.V. (2008). Adherence to Anti Retroviral Therapy
& its determinants amongst HIV patients in India. Indian Journal of Medical Research, 127, 28-36.
Tashakkori, A., & Teddlie, C. (Eds.). (2003). Handbook of mixed methods in social and behavioral research.
Thousand Oaks, CA: Sage.
Tashakkori, A., & Teddlie, C. (1998). Mixed methodology: Combining qualitative and quantitative approaches.
Thousand Oaks, CA: Sage.
UNGASS (2010). India country progress report. National AIDS Control Organization. India. Available from.
http://www.unaids.org/en/Regionscountries/Countries/India/ [March 10, 2011].
16
Mitigating Stressors of HIV
by Involving the Significant Others
– Seema Sahay
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
ABSTRACT
An experimental study was conducted at the National AIDS Research Institute at Pune to
understand the impact of involvement of significant others (ISO) in providing intangible help
to among 126 HIV patients (44% women, 56% men) randomized to experimental arm (n=78)
and standard arm (48). Patients in the experimental arm identified a ‘significant other’ and
were administered the ISO intervention, based on social exchange theory, consisting of 8
counseling modules with 5 focusing on joint sessions with PLWHA and their significant
others and 3 on individual sessions only with the patient. The non intervention arm received
standard counseling as per NACO guidelines. A significant reduction in mean anxiety,
depression and bipolar mood states, but not in mental health, was observed. Self-acceptance
and acceptance by significant others emerged as predominant psychosocial processes
mitigating psychosocial stressors among HIV infected individuals showing usefulness of
ISO in the prevention/care continuum.
INTRODUCTION
“Health is a state of complete physical, mental and social well-being and not merely the absence
of disease or infirmity.”
– Constitution of the World Health Organization,
Geneva, Official records of WHO, No. 2:100.
Positing that in ‘today’s scenario, exposure to pathogenic agents is ubiquitous, factors affecting
disease acquisition and its impact on mental health, need to be investigated. These factors could be
nutritional status, fatigue, behavior, social environment and work environment. According to Cassel
(1976) the ‘social environment’, comprises of psychosocial factors generated by human interaction. In
context of any disease, a psychosocial framework directs attention to endogenous biological responses
to human interactions (Krieger, 2001).
Mental Health and HIV Disease

Many epidemiological studies conducted in India on mental and behavioural disorders report varying
prevalence rates, ranging from 9.54 to 370 per 1000 population (Carstairs, 1976) although mental
disorders reported in epidemiological surveys can be considered lower estimates rather than accurate
reflections of the true prevalence in the population (Math et al, 2006). According to the WHO (2008)
HIV/AIDS imposes a significant psychological burden. In relation to engagement in HIV risk behaviours,
PLWHAs have an increased risk of developing mental health problems including depression and substance
misuse (Chandra, Desai & Ranjan, 2005; Baingana, Thomas & Comblain, 2004). Acute stress is also
common for PLWHA immediately following an HIV positive diagnosis and as new symptoms develops
(Catalán, Burgess, Klimes & Gazzard, 1995). In addition to emotional reactions, acute stress can lead
to “somatic symptoms, suicidal ideation” and “substance abuse” (Gallego, Gordillo & Catalán, 2000). In
much the same way, HIV/AIDS-related stressors can elicit high levels of anxiety among People living
with HIV/AIDS (PLWHA). Anxiety may manifest itself through motor symptoms like shakiness and
jumpiness, autonomic responses such as palpitations, excessive sweating, hyperventilation, rapid heart
beat, and diarrhea, or vigilance symptoms including hyper vigilance, decreased sleep, irritability and
distractibility (Calvert & Stern, 1995). Anxiety can also be a symptom of other AIDS-related mental
disorders like depression (Calvert & Stern, 1995).
Approximately 8 percent of HIV/AIDS patients with immuno-suppression and no prior personal or
family history of bipolar disorder suffer from mania (Koutsilieri, Scheller, Sopper, Meulen & Riederer,
2002) which can develop as a result of organic factors related to HIV (i.e. CNS lesions, medications,
dementia, etc (Koutsilieri et al., 2002). Mania is generally exhibited as intense excitability and may range
from talkativeness and energetic behavior to delusions of grandeur, belligerence and violence (Calvert &
Stern, 1995). Patients can also alternate between periods of mania and depression, a condition known as
bipolar disorder.
HIV/AIDS may also lead to mood disorders. As many as 60 percent of HIV/AIDS patients suffer
from major depression at some point during their illness (Calvert & Stern, 1995; Ciesla & Roberts,
2001). Moreover, PLWHA are two times more likely to suffer from major depression than the general
population (Calvert & Stern, 1995). The disorder may be episodic or chronic, and is characterized by a
general loss of satisfaction from activities that were once enjoyable, overwhelming sadness, and feelings
of guilt and self-loathing (Treisman, Angelino & Hutton, 2001). According to Treisman et al. (2001)
diagnosis of depression may be complicated since it shares several symptoms (i.e. fatigue, weight loss,
etc.) with the general immune system suppression caused by the HIV virus.
People with HIV often suffer from depression and anxiety as they adjust to the impact of the
diagnosis of being infected and face the difficulties of living with a chronic life-threatening illness, for
instance shortened life expectancy, complicated therapeutic regimens, stigmatization, and loss of social
support, family or friends. HIV infection can be associated with high risk of suicide or attempted
suicide. Apart from psychological impact, HIV infection has direct effects on the central nervous system,
and causes neuropsychiatric complications. Infants and children with HIV infection are more likely to
experience deficits in motor and cognitive development compared with HIV negative children. These
conditions adversely affect HIV and AIDS treatment adherence, contribute to risk behaviours and
exacerbate social difficulties associated with stigma and discrimination.
Mitigating Stressors of HIV by Involving the Significant Others 219
In the context of HIV disease the relevant psychosocial factors could be dominance hierarchies,
marginal status in society, including social isolation, bereavement, and stigma where one loses the most
important ‘psychosocial asset’ of ‘social support’. Among HIV/AIDS patients, demoralization generally
springs from the strain of chronic illness, social stigma, and the process of accepting mortality.
Demoralization has many of the same symptoms as depression, including sadness, feelings of helplessness,
and sleep disturbances, but is treated through psychotherapy, not medication (Treisman, Angelino &
Hutton, 2001). Nicholas (1986) described the process of adaptation to HIV infection as going from a
crisis through a transition to a new state of acceptance. The crisis occurs when the patient learns of a
new compromise to health and sexual behavior. Usually after a period of turmoil, patients settle down
and continue with their lives, albeit in an altered state. This kind of reaction is known as an adjustment
disorder (APA, 1987) and management involves primarily support and counseling. This phase ends with
resolution of the crisis and a transition to a relative acceptance of the new state of health. It is often at
the next transition, the point at which the patient is bluntly confronted with the fact of inevitable susceptibility
to illness or mortality that the greater psychological impact occurs. The previous denial can no longer
keep away these fears, and the patient may experience great affective turbulence with recurrent anxiety,
anger, guilt, isolation and potentially self-pity or abhorrence. Not only the disease requires treatment;
therapeutic life style changes become essential. Coping with all of these becomes ‘task’ for a patient
with HIV disease. The ‘task’ becomes all the more arduous for PLHWAs as with improved survival
prospects HIV has transitioned into chronic disease (Sahay, Reddy & Dhayarkar, 2011). This is especially
so because anti-retroviral therapy has become both affordable and accessible in low- and middle-income
countries (Beaglehole et al., 2008; NACO, 2012).
Concept of Significant Other
In the context of HIV disease the relevant psychosocial factors could be dominance hierarchies,
marginal status in society, including social isolation, bereavement, and stigma where one loses the most
important ‘psychosocial asset’ of ‘social support’. Central mental health issue with the acquisition of
HIV infection is the ensuing guilt, stigma and isolation; hence the ‘social capital’ emerges as important
component of care of PLWHAs. Social capital is the sum benefit of the community connections and
networks that link people and foster, for example, beneficial social engagement, support, trust, and
reciprocity. Being more of a behavioral than a biological disease, chronic stressors are associated with
HIV disease which can exact a major toll extending from psychological to physiological to chemical
(e.g., oxidative stress) to genomic expression (Dusek et al., 2008).
One of the beneficial therapies is ‘relationship support’ (Walsh, 2011). Strong interpersonal and
familial relationship in case of HIV disease emerges out to be a central theme for management of patients
with HIV disease. Good relationships are known to be associated with enhanced happiness, quality of
life, resilience and cognitive capacity (Fowler & Christakis, 2008; Jetten, Haslam, Haslam & Branscombe,
2009). Analyses of different domains of life indicate that quality of life is dominated by the domain of
intimacy (Cummins, 2005). Therefore, identification of an encouraging confidante from the community
of the PLWHA to share the burden and the reality of this disease can be important. The role of such a
person/ persons could be to encourage acceptance and appropriate lifestyle changes to support better
quality of life, adherence to treatment and faith in drugs in the PLWHA (Nama et al., 2008; Marcellin et
al., 2008). A confidante of such nature and role is termed as ‘significant other’.
Disclosure of HIV diagnosis is prerequisite for identification of significant other. Thus disclosure is
a necessary prerequisite for acquiring social support. Revealing ones’ serostatus can be an important
mental health factor. Individuals experiencing stress who also disclose their serostatus have reported to
feel better emotionally than those who do not disclose (Derlega, Metts, Petronio & Margulis, 1993;
Greenberg & Stone, 1992). Even though stress is universal, few people are trained in managing it
(Walsh, 2011). It has also been demonstrated that suppressing thoughts or communication about difficult
experiences can increase the likelihood of stress-related problems (Greenberg & Stone, 1992; Pennebaker
& Beall, 1986; Pennebaker, Colder & Sharp, 1990). Disclosure to the friends and family facilitates
support or links to education, health care, and the needed social support which results in improved
physical health. It has been documented that the acquisition of social support, especially from family
members, is important for patient adherence to medical regimens (Fennell, Foulkes & Boggs, 1994;
Stuart & Davis, 1972; Wilcox, Gillian & Hare, 1965).
In India, migration from the village to the city for education and employment result into break-up of
the extended family system and social institutions, giving way to nuclear families, many a times marital
discord, young students and workers living alone, separation, lack of social cohesion, high level exposure
from media and internet, conflict of value systems, identity crises, violence, abuse and risk for HIV and
STI acquisition. Expectations of emotional and material support from the family members were one of
the commonly cited reasons for voluntary disclosure among Indian PLWHAs (Chandra, Deepthivarma
& Manjula, 2003). Thus disclosure becomes a need among PLWHAs. As the AIDS pandemic spreads,
responsibility for AIDS patients has fallen increasingly upon “lay caregivers” in families and communities
(Armstrong, 2001). But the burning question is whether the person in whom disclosure is made would
really be able to provide the support? These roles are highly stressful and take a substantial mental and
physical toll on those fulfilling them as they bear witness to the physical, emotional, and economic needs
of their patients. In regions where resources are limited and stigma high, emotionally distraught family
members may even be tempted to stop providing care for loved ones they know are dying (Brouwer,
Lok, Wolffers & Sebagalls, 2000). In order for the emotional needs of PLWHA to be met, addressing the
needs of their caregivers should be a priority. This has become all the more relevant when in the era of
easy access to ART, the HIV disease has become chronic and manageable (Sahay, Reddy & Dhayarkar,
2011). Providing counseling for caregivers may help both the patient and caregiver to adjust to life with
this disease. Interventions that provide accurate information about HIV transmission and the needs of
PLWHA can significantly reduce HIV stigma and discrimination and encourage the ‘significant other’ to
provide support; thus providing an enabling environment to reduce stressors among PLWHAs. To
understand and engage the significant other to provide informal help to PLWHA, an experimental study
was designed at National AIDS Research Institute, Pune, India.
Objective : The broad objective of the study was to understand the role of ‘significant other’ in
providing formal care and support services to PLWHA.
METHODS
In this clinic based experimental study consenting HIV infected individuals were randomized into
standard arm and experimental arm. The participants in the standard arm received standard counseling
and testing at each study visit. The participants in experimental arm received the intervention of
involvement of ‘significant other’ (SO). Informed consent was also obtained from significant others
for participation in this study. The study was approved by the institutional Ethics Committee of
National AIDS Research Institute.
The experimental arm participants received eight sessions of intervention in which five sessions
were joint session including both index and the significant other. The SO participated in additional three
training sessions all alone. Baseline and end line data were collected semi-structured questionnaire and
psychological scales. This study was conducted at NARI-Talera Clinic, Talera Municipal Hospital, Pimpri
Chinchwad, and Pune.
The counseling package was designed on the principle of disclosure of one’s HIV status to some
close associate defined as ‘Significant Other’. A ‘significant other’ could be friend, spouse or relative.
The significant other was identified by the study participant and criteria for identification were trust,
confidence to communicate with the concerned person and past history of dependability as reported by
the index. All these characteristics were confirmed with the study participant by conducting discussions
and encouraging them to identify their significant other in whom they would be able to disclose their
HIV status or they had already disclosed their HIV status.
Theoretical Framework of Study Intervention
Based on the Social Exchange theory of Thibaut and Kelley (1959), persons with HIV are likely to
reveal their HIV diagnosis to significant others and/ or sexual partners once the rewards for disclosing
outweigh the associated costs. The assumption is that individuals avoid costly relationships and interactions
and seek rewarding ones to maximize the profits in their relationships or behaviors. More specifically,
when individuals are faced with numerous choices they tend to make those which provide the most
Individual cost
Stigma, ostracism, denial,
anger, guilt
Social cost
Fear of loss of
employment, separation/
divorce, admission to
school for children,
insurance
Figure 1: The schematic representation of theory based intervention involving significant others
rewards with the least associated costs. Rewards are “pleasures, satisfactions, and gratifications the
person enjoys” (Thibaut & Kelley, 1959) and include social, physical, psychological, or emotional dividends
that satisfy or please. Costs are things of value that are relinquished in preference for an alternative
reward that is of equal or greater value or something that would be punishing or distasteful that one
would otherwise avoid. For an HIV infected individual, consequences of disclosing can provoke feelings
of anxiety and threats to personal well-being and rewards could be informal support, relief from isolation,
support in adherence etc (Fig. 1).
Negative social consequences external to the HIV-positive individual, such as fear expressed by
others, ostracism, and degradation may be experienced. Costs in terms of stressors within the individual’s
family network, such as denial, anger, guilt, and uncertainty are also associated with HIV (Frierson,
Lippmann & Johnson, 1987; Herek & Glunt, 1988; Macklin, 1988). Negative emotional consequences
of disclosure that have been documented include rejection, abandonment, and isolation (Lovejoy, 1990;
Stulberg & Buckingham, 1988; Zuckerman & Gordon, 1988). Hence although there was a felt need of
disclosure yet threat of negative consequences remained. In addition, physical, social, and emotional
consequences can be confounded by fear of, or actual loss of, employment, insurance, housing, medical
services, child custody, and the right to education (Anderson, 1989; Herek & Glunt, 1988; Zuckerman
& Gordon, 1988).
To overcome those negative consequences of disclosure, the new intervention that comprised of
eight session training module was developed for patient and significant other because the rewards or
positive consequences of disclosing can also be substantial. Each of these consequences may be
important for the physical, psychological and social functioning of the person. Disclosing HIV diagnosis
can result in the acquisition of emotional, physical, and social resources. These resources include
assistance with home-related chores and errands, health and child care, housing, medical attention,
and the provision of medical information. Emotional benefits include the acquisition of social support
and acceptance. Thus, involvement of significant [ISO] in a meaningful way may lead to reduction in
stressors in PLWHAs.
Study Counseling Module: Involvement of Significant Others [ISO module]
Although, when this study was conceived and implemented, free ART roll out program was not
into existence in the country yet importance of enhancement in the quality of life, reduction in stress/
anxiety/depression would have unquestionable impact on ART adherence. Disclosing one’s sero-
status frees the individual from hiding complicated medicine taking rituals from friends, family, and
coworkers. Thus, indirectly, support for adhering to medical regimens is a positive consequence of
disclosure. Hence the study has relevance for patients who are on ART. The study intervention
package or the counseling modules consisting of eight sessions are depicted (Fig. 2 & 3). Each
session was planned for 60 minutes. One session each was conducted once in a week by trained
counselor at the clinic.
A. Joint Counseling Sessions : Figure 2 shows the snapshot of counseling sessions that were
meant to be joint session between the index and his/her significant other. This part of the
module takes cognizance of the issues and concerns an HIV infected person would have when
s/he discloses HIV status to someone. It also deals with the issues relevant for ‘significant
other’ who may consciously or sub consciously stigmatize or discriminate. In addition the
needs of PLWHA were also part of these sessions so that the significant other may have
correct knowledge of informal care that may help the patient.
Figure 2 : Snapshots of various joint sessions for an HIV infected

individual and his/ her significant others
The Psycho-educational module a (joint session) comprised of following sessions:
• Stigma and discrimination
• Family and social network
• Nutrition, health and hygiene
• Home based care
• Legal issues
B. Individual Counseling Session for ‘Significant Other’ : Figure 3 depicts individual counseling
sessions with the significant other who was expected to provide informal help to the patient
and enhance his/her quality of life and reduce anxiety and depression. The sessions under this
module focused on imparting correct knowledge and removing myths and misconceptions. It
also dealt with the mental health needs of the PLWHAs.
Figure 3 : Training sessions for significant other.
The psycho-educational module B (individual index session) comprised of following

three sessions:
• HIV/ AIDS information and education
• Myths and misconceptions: Reactions of significant other after disclosure
• Mental Health Needs and stressors in PLHAs; Improving quality of life; Care & support
to PLWHAs
All the sessions were prepared in power point. There were stories and activities included in
the sessions.
Study Procedures
A total of 319 HIV infected consenting individuals were screened in the study of which 180 were
found to be eligible for the study. One hundred and twenty six individuals participated in the study.
Rest of the eligible individuals could not participate because of self refusal (18) time problem and
distance (27). Nine of them expired before randomization. The 126 enrolled patients were randomized
to experimental arm (n=78) and standard arm (48). Patients in the experimental arm identified a
significant other in whom they had disclosed their HIV status. The study intervention required 8
sessions. Each session was taken once in a week. The intervention was completed in 8 weeks for
participants and their significant other.
Data was collected from all index cases i.e. HIV infected participants. No data was collected from
the significant other. Baseline demographic data was collected using structured questionnaire. We used
following psychological scales to assess anxiety and depression both at baseline and at end line:
1. Beck Depression Inventory (BDI)
2. Hamilton Depression Rating Scale (HDRS)
3. Hamilton Anxiety Rating Scale (HARS)
4. Mental Health Needs questionnaire (MHNS)
5. Profile of Moods State (POMS-BI)
The psychological data was collected two weeks prior to intervention at baseline and two weeks
after the last session at end line. Data was entered in access program and analyzed in SPSS software
version 11.0.
RESULTS
Of the 126 participants, 44% were women and 56% were men, majority (77%) of the participants
were young (18 – 39 years), 58% were married while 33% were widowed and majority were
employed (73%).
All the participants in the experimental arm had an identified significant other. There were no refusals.
The study arm underwent ISO intervention in which the index case and the significant other undertook
educational and activity sessions together while the standard arm participants received standard counseling
for HIV infected individuals as per NACO guidelines (NACO, 2008). An overall significant reduction in
anxiety, depression and bipolar mood scores were observed (Table 1) emphasizing the importance of
counseling among PLHAs.
Table 1: Comparison of Anxiety Depression, Mental Health Needs and
Bipolar Mood States Scores among 126 Study Participants
Scale Baseline Endline

Statistical Test P-value
(N=126) Scores Scores
BDI 26.38 12.83 Wilcoxon Signed Ranked Test p<0.01
Anxiety [HARS] 15.76 9.80 Paired Samples t-test p<0.01
Depression[HDRS] 23.58 9.80 Wilcoxon Signed Ranked Test p<0.01
MHN 55.09 31.40 Paired Samples t-test p<0.01
POMS-BI 128.10 106.80 Wilcoxon Signed Ranked Test p<0.01
Abbreviations : BDI: Beck’s Depression Inventory; MHNS: Mental Health Needs Scale; POMS-BI: Profile
of Mood Scale-bipolar
To assess the impact of the ISO intervention on the psychological states, scale scores were
compared between standard and experimental arms both at baseline and end line by performing Mann
Whitney test (Table 2).
Table 2: Anxiety, Depression, Mental Health Needs and

Bipolar Moods State Scores at Baseline and Endline
Baseline Endline
Psychological Standard Experimental Standard Experimental

state [Scale] Arm Arm Arm Arm
P-value P-value
Mean Scores Mean Scores Mean Scores Mean Scores
(n=48) (n=78) (n=48) (n=78)
Depression [BDI] 24 24 P=0.782 13.50 8.0 P=0.00
Anxiety [HARS] 15 15 P=0.784 6 5 P=0.01
Depression HDRS] 23 23 P=0.518 9 7 P=0.01
MHN 48 57.5 P=0.252 28.5 23 P=0.05
POMS-BI 120 115 P=0.082 111 97 P=0.02
Participants in both the arms showed similar psychological state at baseline. A significant reduction
in mean anxiety, depression and bipolar mood states was observed in this study. Mental health needs
scores did not show decrease in mean scores.
DISCUSSION
HIV/AIDS infected individuals face a number of the same stressors confronted by other patients
with chronic illness. These stressors are long-term discomfort, physical deterioration, physical and
financial dependence and eventual death. These factors contribute to higher mental disorder prevalence
among chronically ill individuals (30-50%) than among the general population (15-30%), (Gallego,
Gordillo & Catalán, 2000) and suicide rates that are 7 to 37 times the rates of demographically comparable
groups. A significantly higher prevalence of depressive symptoms among HIV-positive people reported
in other studies (Maj et al., 1994; Mast et al., 2004). However in resource limited settings there is
shortage of human resource in care and support programs. Family relationships and the support of a
partner have been reported to influence mental health (Collins, Holman, Freeman & Patel, 2006). In our
study, involvement of significant other showed decrease in anxiety, depression and other stressors
among PLWHAs. Care by significant other could be cost effective and sustainable way of provision of
care to the patient. Our study has emphasized the need of enhancement of knowledge about HIV and
issues related to care can empower significant other to provide informal help to the PLWHA. The result
on social support is in line with previous studies that have investigated the relationship between social
support and mental and physical health outcomes; these studies have shown that there is a positive
relationship between social support and health outcomes (Mindel & Wright, 1982; Smith-Ruiz, 1985;
Taylor & Chatters, 1986; Olapegba, 2005).
A PLWHA faces an array of stressors which are new due to unique nature of disease because of
biological, behavioral and social aspects intertwine with each other. There is no historical precedent of
a disease associated with these kinds of stressors. Our study also indirectly reinforces that disclosure is
critical especially if significant other is to be identified who would eventually provide support. As seen in
other studies too, a range of benefits from disclosure of serostatus such as emotional and instrumental,
support, caretaking, empathy, and acceptance became available to the PLWHAs (Derlega et al., 2002;
Gielen et al., 2000; (Kalichman, DiMarco, Austin, Luke & DiFonzo, 2003; Zea, Reisen, Poppen &
Echeverry, 2005). This could lead to higher adherence to medications and fewer mental health problems
(Murphy et al., 2007).
It is also known that disclosure to others can result in violence, isolation, discrimination, rejection,
depression, and lower self-esteem. Thus, the benefits and costs of disclosure may be about equal, on
average, for the HIV positive person when negative consequences are likely to occur (Crepaz & Marks,
2003). Hence identification of the person for disclosure and correct training to prevent negative
consequences are very significant for home based care and non judgmental support for PLWHAs in
India. Social support for PLWHA has been shown to be a critical component of good mental health;
health care providers should assess patient support networks as part of their initial patient evaluation
(Baingana, Thomas & Comblain, 2005). Our study has confirmed that acceptance of HIV status is key
to achieve care and support. The findings from this exploratory study suggest that the informal support
from ‘significant other’ may help in providing emotional and social support to the HIV infected individual.
Informal care for PLWHA by family, close relatives, close friends and members of non-official groups
complements hospital care, which is sometimes limited to its biomedical component and provides the
material, moral, financial, social, economic and relational care essential for PLWHA and their close
relatives and friends (de Loenzien, 2009).
The eight session intervention module with involvement of significant others resulted in the reduction
of anxiety and depression scores among HIV infected study participants. It has also reduced scores of
bipolar mood states. The role of significant other in providing care to PLWHAs has also been reported in
another study conducted in Botswana (Nama et al., 2008). According to Nama et al., participants may
have disclosed their HIV-status to a number of people, but if they did not identify one particular person
in whom they could confide, they were not able to access individualized, non- judgmental emotional
support, and tended to describe symptoms of depression.
Other skillful strategies for stress management are now available, ranging from lifestyle changes to
psychotherapy to self-management skill. One of the beneficial management strategies would be utilization
of social capital wherein ‘significant other’ could be an important unit of support for PLWHAs. A
significant other would include more than being related. A significant other could be spouse, friend or
any other relative. Relationships are the contexts in which stigma, prejudice, discrimination, and violence
emerge (Rotheram-Borus et al., 2011). A significant other of the PLWHA would need to cross all the
barriers of misconceptions and fear surrounding HIV/ AIDS. Hence the specific training of significant
other gains importance. This module provided crucial information on HIV/ AIDS, situations where a
patient may feel stigmatized or discriminated, myths and misconception in a non technical manner to the
significant other of the HIV infected individual. The joint sessions brought the rapport and encouraged
open communication and discussion regarding the HIV disease, its consequences and needs. Although
an exploratory study, the intervention module has shown preliminary level of success in reducing
psychiatric morbidity in HIV infected individuals.
The psycho-educational modules reflect three theoretical models of communication perspectives
(Leventhal & Cameroon, 1987). The communication perspective indicates effective messages by trusted
and affective messenger i.e., the counselor or the health care provider who administers the sessions.
The counselor informs the patient adequately about the disease. Counselor also informs the significant
other about the disease. Other factors, external to the message itself, enhance acceptance of the message,
such as the alliance with the therapist, and affective components including, for example, the counselor’s
empathy, friendliness, interest and concern. Additional information about ways to incorporate the behaviour
into the patient’s daily routines is also included in the module.
As the HIV/AIDS pandemic enters its third decade it is crucial to ensure that limited resources are
used most efficiently and effectively in order to mitigate the impact of AIDS. Organizations must begin
to incorporate mental health and home based care in their intervention agendas in order to meet the needs
of PLWHAs.
CONCLUSION
Advances in medical science have transformed life with HIV/AIDS from planning for an early death
into living with chronic illness. Seeking counseling is a common path to developing hope in times of
distress. Diagnosis of HIV triggers the initial despair leading to limiting attitudes and isolation and withdrawal
among patients. Upon learning they were HIV positive, patients conceal their HIV status and they have
a sense of ‘not being’. Self-acceptance and acceptance by “significant other” to the PLWHA are
predominant psychosocial processes handled by the intervention in this study. Psychosocial stressors
among HIV infected individuals can be mitigated with the involvement of significant other (ISO)
intervention which is based on the Social Exchange theory where persons with HIV are likely to reveal
their HIV diagnosis to significant others and/ or sexual partners once the rewards for disclosing outweigh
the associated costs. An HIV infected person may have disclosed HIV-status to a number of people, but
to access individualized, non-judgmental emotional support a trained significant other to provide
psychosocial support is required. The eight session intervention module with involvement of significant
others resulted in the reduction of anxiety and depression scores among HIV infected study participants.
It has also reduced scores of bipolar mood states. The psychosocial processes that are intervened
through this intervention are personal hope, development of an attitude and spirit of determinism,
addressing prejudices and restructuring to attain quality life.
Implications
This study provides a systematic process of training the ‘significant others’ of the PLWHA to
provide informal support. During the counseling sessions significant other imbibes the concept of empathy
and understands the issues surrounding HIV disease, its social repercussions and how his/ her support
can enhance the well being of the patient. In today’s context, involvement of significant other would be
useful for ART adherence and retention in the care continuum. With increasing longevity of PLWHAs,
other geriatric diseases would also show up eventually and it would require ‘ISO’ for home based care
and mental health and well being of the patient. This module would need to be adapted for various
situations in the life of PLWHAs especially in the post HAART era. Since it is a theory based module,
adaptation would be simple and scientific.
REFERENCES
American Psychiatric Association. (1987). Diagnostic and statistical manual of mental disorders (3rd ed.),
revised. Washington, DC.
Anderson, E.A. (1989). Implications for public policy: Towards a pro-family AIDS social policy. In E. Macklin
(Ed.), AIDS and Families (pp. 187-228). Binghamton, NY, Hayworth Press.
Armstrong, S. (2001). Caring for caregivers: Managing stress in those who care for people with HIV and
AIDS. Geneva: UNAIDS.
Baingana, F., Thomas, R., & Comblain, C. (2004). HIV/AIDS and mental health. Washington: Human Development
Department, World Bank. [http://www.eldis.org/static/DOC19848.htm]
Baingana, F., Thomas, R., & Comblain, C. (2005). HIV/AIDS and mental health. Health, Nutrition and Population
(HNP) discussion paper: World Bank.
Beaglehole, R., Epping-Jordan, J., Patel, V., Chopra, M., Ebrahim, S., Kidd, M., & Haines, A. (2008). Improving
the prevention and management of chronic disease in low-income and middle-income countries: A priority
for primary health care. The Lancet, 372(9642), 940-949.
Brouwer, C.N.M., Lok, C.L., Wolffers, I., & Sebagalls, S. (2000). Psychological and economic aspects of HIV/
AIDS and counseling of caregivers of HIV-infected children in Uganda. AIDS Care, 12(5), 538.
Calvert, W., & Stern, R., (1995). Neuropsychiatric emergencies in the patient with HIV infection. Emergency
Medicine Reports, 16 (15), 141-148.
Carstairs, G.M., & Kapur, R.L. (1976). The great university of Kota. London: The Hogarth Press.
Cassel, J. (1976). The contribution of the social environment to host resistance. Am J Epidemiol, 104,107–123.
Catalán, J., Burgess, A., Klimes, I., & Gazzard, B. (1995). Psychological medicine of HIV infection. Oxford:
Oxford University Press.
Chandra, P.S., Deepthivarma, S., & Manjula, V. (2003). Disclosure of HIV Infection in South India: Patterns,
reasons and reactions. AIDS Care, 15(2), 207-215.
Chandra, P.S., Desai, G., & Ranjan, S. (2005). HIV & psychiatric disorders. Indian J Med Res, 121(4), 451-467.
Ciesla, J.A. & Roberts, J.E. (2001). Meta-analysis of the relationship between HIV infection and risk for depressive
disorders. American Journal of Psychiatry, 158, 729.
Collins, P.Y., Holman, A.R., Freeman, M.C., & Patel, V. (2006). What is the relevance of mental health to
HIV/AIDS care and treatment programs in developing countries? A systematic review. AIDS, 20(12),
1571–1582.
Crepaz, N., & Marks, G. (2003). Serostatus disclosure, sexual communication and safer sex in HIV-positive men.
AIDS Care, 15(3), 379-387.
Cummins, R. A. (2005). The domains of life satisfaction: An attempt to order chaos. In A. C. Michalos (Ed.),
Citation classics from social indicators research (pp. 559–584). Dordrecht, Netherlands: Springer.
De Loenzien, M. (2009). Implementation of a continuum of care for people living with HIV/AIDS in Hanoi
(Vietnam). Sante, 19(3),141.
Derlega, V., Winstead, B., Greene, K., Serovich, J., & Elwood, W. (2002). Perceived HIV-related stigma and HIV
disclosure to relationship partners after finding out about the seropositive diagnosis. Journal of Health
Psychology, 7(4), 415.
Derlega, V.J., Metts, S., Petronio, S., & Margulis, S.T. (1993). Self- Disclosure. Newbury Park, CA: Sage
Publications.
Dusek, J. A., Out, H. H., Wohlhueter, A. L., Bhasin, M., Zerbini, L. F., Joseph, M. G., & Libermann, T. A. (2008).
Genomic counter-stress changes induced by the relaxation response. PLoS One, 3, e2576. Doi:10.1371/
journal.pone.0002576
Fennell, R.S., Foulkes, L.M., & Boggs, S.R. (1994). Family- Based program to promote medication compliance in
renal transplant children. Transplant Proc, 26(1), 102-103.
Fowler, J. H., & Christakis, N.A. (2008). Dynamic spread of happiness in a large social network: Longitudinal
analysis over 20 years in the Framingham heart study. British Medical Journal, Advance online publication.
Doi:10.1136/bmj.a2338
Frierson, R.L., Lippmann, S.B., & Johnson, J. (1987). AIDS: Psychological stresses on the family.
Recommendations for counseling relatives of the AIDS patient. Psychosomatics, 28(2),65-68.
Gallego, L., Gordillo, V., & Catalán, J. (2000). Psychiatric and psychological disorders associated to HIV
infection. AIDS REV, 2, 48-59.
Gielen, A., Fogarty, L., O’Campo, P., Anderson, J., Keller, J., & Faden, R. (2000). Women living with HIV:
Disclosure, violence, and social support. Journal of Urban Health, 77(3), 480–491.
Greenberg, M.A., & Stone, A.A. (1992). Emotional disclosure about traumas and its relation to health: Effects of
previous disclosure and trauma severity. J Pers Soc Psychol, 63(1),75-84.
Herek, G.M., & Glunt, E.K. (1998). An epidemic of stigma. Public reactions to AIDS. Am Psychol, 43(11), 886-891.
Jetten, J., Haslam, C., Haslam, S. A., & Branscombe, N. R. (2009). The social cure. Scientific American Mind, 20,
26–33.
Kalichman, S. C., DiMarco, M., Austin, J., Luke, W., & DiFonzo, K. (2003). Stress, social support, and HIV-status
disclosure to family and friends among HIV-positive men and women. Journal of behavioral medicine, 26(4),
315-332.
Koutsilieri, E., Scheller, C., Sopper, S., Ter Meulen, V., & Riederer, P. (2002). Psychiatric complications in Human
Immunodeficiency Virus infection. Journal of Neurovirology, 8(2), 129-133.
Krieger, N. (2001). Theories for social epidemiology in the 21st Century: An eco social perspective. Int. J.
Epidemiol, 30(4), 668-677.
Leventhal, E.A., & Cameron, L. (1987). Behavioral theories and the problem of compliance. Patient Educ
Couns, 10,117-138.
Lovejoy, N.C. (1990). AIDS: Impact on the gay man’s homosexual and heterosexual families. Marriage and
Family Review, 14, 285-316.
Macklin, E.D. (1988). AIDS: Implications for families. Family Relations, 37,141-149.
Maj, M., Janssen, R., Starace, F., Zaudig, M., Satz, P., Sughondhabirom, B., & Sartorius, N. (1994). WHO
neuropsychiatric AIDS study, cross-sectional phase I: Study design and psychiatric findings. Archives of
General Psychiatry, 51(1), 39.
Marcellin, F., Boyer, S., Protopopescu, C., Dia, A., Ongolo Zogo, P., Koulla Shiro, S., & Carrieri, M. P. (2008).
Determinants of unplanned antiretroviral treatment interruptions among people living with HIV in Yaoundé,
Cameroon (EVAL survey, ANRS 12 116). Tropical medicine & international health, 13(12), 1470-1478.
Mast, T., Kigozi, G., Wabwire-Mangen, F., Black, R., Sewankambo, N., Serwadda, D., Gray, R., Wawer, M., & Wu,
A.W. (2004). Measuring quality of life among HIV-infected women using a culturally adapted questionnaire
in Rakai district, Uganda. AIDS care, 16(1), 81-94.
Mindel, C. H., & Wright, R. (1982). The use of social services by black and white elders: The role of social
support systems. Journal of Gerontological Social Work, 4,107-125.
Murphy, D. A., Marelich, W. D., Rappaport, N. B., Hoffman, D., & Farthing, C. (2007). Results of an Antiretroviral
adherence intervention: STAR (Staying Healthy: Taking Antiretrovirals Regularly). Journal of the
International Association of Physicians in AIDS Care (JIAPAC), 6(2), 113-124.
NACO. (2012). Ministry of Health and Family Welfare, Government of India. Available from: http://
www.nacoonline.org/, accessed on January 3, 2012.
Nama, S.L., Fielding, K., Avalos, A., Dickinson, D., Gaolathe, T., & Geissler, W. (2008). The relationship of
acceptance or denial of HIV-status to Antiretroviral adherence among adult HIV patients in Urban Botswana.
Social Science & Medicine, 67, 301–310.
National AIDS Control Organization. (2008). Draft guidelines for national roll out of second line ART. National
Guidelines on Second Line ART for Adults and Adolescents.
Nichols, S.E. (1986). Psychotherapy and AIDS. In T. Stein & C. Cohen (Eds.), J Contemporary Perspectives on
Psychotherapy with Lesbians and Gay Men (pp.209-239). New York: Plenum Press.
Olapegba, P.O. (2005). Predicting mental health of people living with HIV/AIDS (PLWHA): The role of
psychosocial factors. J. Hum. Ecol, 18(1), 69-72.
Pennebaker, J.W., & Beall, S.K. (1986). Confronting a traumatic event: Toward an understanding of inhibition
and disease. J Abnorm Psychol, 95(3), 274-81.
Pennebaker, J.W., Colder, M., & Sharp, L.K. (1990). Accelerating the coping process. J Pers Soc Psychol, 58(3),
528-537.
Rotheram-Borus, M. J., Swendeman, D., Lee, S. J., Li, L., Amani, B., & Nartey, M. (2011). Interventions for
families affected by HIV. Translational behavioral medicine, 1(2), 313-326.
Sahay, S., Reddy, S., & Dhayarkar, S. (2011). Optimizing adherence to Antiretroviral Therapy. Indian J Med Res,
134, 835-849.
Smith-Ruiz, D. (1985). Relationship between depression, social support and physical illness among elderly
blacks: Research notes. Journal of the National Medical Association, 77, 1017-1019.
Stuart, R.B., & Davis, B. (1972). Slim chance in a fat world. Chicago: Research Press.
Stulberg, I., & Buckingham, S.L. (1988). Parallel issues for AIDS patients, families, and others. Social casework.
The Journal of Contemporary Social Work, 69, 355-359.
Taylor, R. J., & Chatters, L. M. (1986). Patterns of informal support to elderly black adults: Family, friends, and
church members. Social Work, 31,432-436.
Thibaut, J.W., & Kelley, H.H. (1959). The Social Psychology of groups. New York: Wiley
Treisman, G.J., Angelino, A.F., & Hutton, H.E. (2001). Psychiatric issue in the management of patients with HIV
infection. Journal of the American Medical Association, 286 (22), 2857-2864.
Walsh, R. (2011). Life style and mental health. American Psychologist, American Psychological Association,
66 (7), 579–592. DOI: 10.1037/a0021769
Wilcox, D.R.C., Gillian, R., & Hare, E.H. (1965). Do psychiatric outpatients take their drugs? British Medical
Journal, 22,790-792.
World Health Organization. (2008). EXECUTIVE BOARD EB124/6 124th Session Provisional agenda item 4.3.
2008. Accessed at http://apps.who.int/gb/ebwha/pdf_files/EB124/B124_6-en.pdf on 27 February 2012.
Zea, M. C., Reisen, C. A., Poppen, P. J., & Echeverry, J. J. (2005). Disclosure of HIV status and psychological
well-being among Latino gay and bisexual men. AIDS and Behavior, 9(1), 15-26.
Zuckerman, C., & Gordon, L. (1998). Meeting the psychosocial and legal needs of women with AIDS and their
families. N Y State J Med, 88(12), 619-620.
17
Community Level Counseling
Interventions for HIV/AIDS
– Indranee Phookan Borooah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
ABSTRACT
Counselors at ICTC/PPTCT bring people to voluntary testing, identify ones infected with
HIV/AIDS and thus play an extremely important role in the prevention and control of the
disease. Under the mandate of Saksham, a national level project funded by the Global
Fund, Gauhati University, Assam, is providing Counseling Supervision to the HIV/AIDS
counselors working under the Assam State AIDS Control Society. Counseling Supervision
for the ICTC counselors is an approach in which counselors /health care professionals and
their supervisors engage in a two-way communication process jointly seeking solutions to
problems and enhancement of counseling skills. It is a participatory approach and draws on
multiple sources of information -peers and the community- to improve counselors’ performance.
A number of difficult cases were reported by counselors and counseling supervisors
highlighting the efficacy of counseling as a community-level intervention in identification,
control and prevention of HIV/AIDS.
INTRODUCTION
Acquired Immuno Deficiency Syndrome (AIDS) is the most dreaded life-threatening disease of the
present times. It appears to be a relatively new disease; first recognized in 1981 and then identified in
1983. In India, the numbers of cases are increasing and with a population of over 1 billion, the HIV
epidemics in India will have a major impact on overall spread of HIV. With its large population and
population density, lower literacy level and consequently lower levels of awareness, HIV/AIDS is one of
the most challenging public health problem ever faced by the country.
The AIDS control programme in India is spearheaded by National AIDS Control Organization (NACO),
and the State AIDS Control Societies (SACS) of each state in the country, which work under the
directives of NACO.
As posted on the website of NACO, “The challenge before NACO is to make all HIV infected
people in the country aware of their status so that they adopt a healthy lifestyle; access life-saving care
and treatment and help prevent further transmission of HIV. Thus, counselling and testing services are
important components of prevention and control of HIV/AIDS in the country.”
NACO/SACS has set up various centers in its efforts to control and prevent the disease including
the Integrated Counselling and Testing Centre (ICTC) and the Prevention of Parent to Child Transmission
(PPTCT) Centre. These centres are the entry points, for individuals to undergo testing, in the government
health facilities and, therefore, is the point at which identification, control and prevention procedures are
set in motion through counseling by the HIV/AIDS Counsellor. The ICTC/PPTCT Counsellor, therefore,
plays a pivotal role in HIV/AIDS control and prevention.
The main functions of an ICTC Counsellor are:
• Pre-Test Counselling, wherein the counsellor provides basic information on the modes of HIV
transmission, and promotes behavioural change to reduce vulnerability. The counsellor also
empowers the client to take decision for taking the HIV test and give consent for testing.
• Post-Test Counselling for both negative and positive test results. Referral to ART Centre.
• Linking people with other HIV prevention, care and treatment services.
• Outreach work
• Reporting
Under the Global Fund for AIDS, Tuberculosis and Malaria (GFATM) Round 7 (R-7), Counselling
Component, a national level project, Saksham, has been taken up involving institutes of higher learning
from across the country and spearheaded by Tata Institute of Social Sciences (TISS). One of the
institutes involved in this project is Gauhati University, Assam, through its Department of Psychology.
As per the mandate of Saksham, counseling supervision is an integral part of the project. Gauhati
University thus is providing counseling supervision to all the ICTC and PPTCT counselors working for
Assam State AIDS Control Society.
“Counselling Supervision for the ICTC counselors is an approach in which counselors /health
care professionals and their supervisors engage in a two-way communication process and jointly
seek solutions to problems. It is a participatory approach and draws on multiple sources of
information (peers and the community), to improve the counsellor’s performance”
- Counselling Supervision Manual of Saksham.
Hess (1980) defines supervision as “A quintessential interpersonal interaction with the general goal
that one person, the Supervisor, meets with another, the Supervisee, in an effort to make the latter more
effective in helping people.”
According to Family Health International (2005), counseling supervision is an alliance between a
supervisor and a counselor in which the counselor gives an account of his or her work, reflects on it,
receives feedback and guidance (if required) with the objective of enabling the counselor to gain ethical
competence, confidence and creativity so that she/he may provide clients the best possible service.
Apart from counseling, the ICTC/PPTCT counselor in course of his/her duties has to undertake
some outreach work too. The counselor sometimes visits clients in their homes to bring them back into
the fold of treatment or for follow-up counseling or for any other reason. These are some interventions
which are done by the counselor at the personal or family level within the clients’ residential environments.
Community Level Counseling Interventions for HIV/AIDS 235
According to Centers for Disease Control and Prevention (2013), “Community – A group of
individuals that exists prior to the intervention whose members share one or more common characteristics
and a common geographic area, and relate with one another in a way that may influence their HIV risk.”
They have also stated:
• Common characteristic–a shared trait or feature or quality, which may include, but is not
limited to, race/ethnicity, culture, religion, social economic status, education level, behavior,
identity, customary beliefs or practices, social norms, and other underlying motivators.
• Geographic area–a physical region, area, or medium (e.g., internet) where people live,
congregate, or frequent.
According to Dalton, Elias and Wandersman (2007), “Although originally tied to a place or a
locality, the term community has come to refer to sets of relationships among persons, at many levels,
whether tied to place or not. Thus, a classroom, sorority, religious congregation, online virtual community,
or cultural group may be considered a community.”
Figure 1 : Ecological Levels of Analysis for Community Psychology

(Dalton, Elias & Wandersman, 2007)
Community-level interventions may be carried out at different levels. Community psychology
recognizes different ecological levels of analysis wherein the systems most proximal are closest to the
individual and involve most face-to-face contact. The more distal systems are less immediate to the
individual, yet may have broad effects.
Dalton, Elias and Wandersman (2007), have given a typology of different ecological levels of analysis
for community as shown in Figure 1. Starting with the individual, who is nested within the other levels,
the authors state that “the person chooses his or her relationships or environments to some extent, and
influences them in many ways; likewise, they influence the person. Each person is involved in systems of
multiple ecological levels, such as family and friends, workplace, and neighbourhood.” Based on such
a typology, it may then follow, that community interventions for the prevention and control of HIV/
AIDS may be carried out at any of these levels.
Research has focused on interventions at various levels of community. Targeted interventions have
included students, adolescents, IDUs, FSWs and MSMs, particularly, and also the general population
widely. Levine, Perkins and Perkins (2005) have reported various interventions for prevention of HIV/
AIDS. These are as mentioned below:
• Media campaigns are designed to increase knowledge and understanding about AIDS and are
targeted at the larger society as every individual is potentially at risk if they engage in unsafe
sex. Some media campaigns may, however, target special populations and bring about behavior
change in that target group.
• Reaching minority communities is another intervention wherein HIV programmes are targeted
at minority groups in terms of ethnicity, gender, etc. In these, interventions must be specific to
the group including specific cultural norms, values, and common language.
• Small group interventions involve face-to-face interactions to teach and promote the
specific skills to reduce risk. These programmes are conceptually based and specific to
the target group and are aimed at increasing risk reduction, motivation, and behavioural
skills simultaneously.
• Outreach programmes which are combined with other outreach efforts may be implemented
for populations which are difficult to reach or are hostile to intervention efforts. Another
intervention is the HIV and the accident prevention model. This model is based on the premise
that HIV infections can be high even in people who have adequate knowledge about HIV and
risky behaviours. Therefore, this model suggests additional points for intervention, such as
effective skills for managing relationships, etc., the motivation to use these skills, practice and
adoption of these new norms, etc.
• Changing social norms through informal supports and resources such as using peer educators
as role models to deliver credible messages and skills or local opinion leaders to conduct
neighbourhood-based workshops, is another intervention strategy.
These are some types of interventions which have been used, among many, in HIV/AIDS prevention
and control. However, Levine, Perkins and Perkins (2005) write that “Prevention is a community issue’’
and that although “risky behaviours are an individual matter, the necessary scale of change makes HIV
prevention a community issue..... ”
Such a community-level framework was followed by the counselors and their respective counseling
supervisors in their interventions, through counseling, with difficult clients. These interventions have
been found to be effective at different levels of community.
Objective
The objective of this study was to assess the efficacy of counseling by the ICTC counsellor as a
community-level intervention.
With this objective in mind the research questions posed were :

• Is it possible for one-to-one HIV/AIDS counseling by the ICTC counselor to be an effective
community-level intervention?
• Is it possible for the ICTC counselor to make intermediate level community interventions?
METHODS
The method used is the case study approach based on the case-reports of community-level
interventions through the process of counseling. It meets the first criterion of a community-level
intervention given by Centers for Disease Control and Prevention (2013) which are listed below.
According to CDC–Community-level intervention (CLI) study is an evaluation study of an intervention
intended to reduce the HIV risk of an entire community. A CLI study does the following:
• Directly or indirectly influences the knowledge, attitudes, social norms, or behaviors of
individuals in the targeted community.
• Provides the intervention where individuals of the targeted community are likely to be; and
• Delivers the intervention broadly (not only to those assessed) and broadly assesses community
members (not only those who received the intervention).
Sample
The sample consisted of clients who had come to the ICTC centres for counseling and testing. Five
such clients and their situations have been selected to be presented as cases in this study. All the clients
were from rural areas of Assam.
The cases included in this study are presented as narratives by the counseling supervisors. The last
case is narrated by the investigator as two similar cases were presented by two counseling supervisors
with the same observations. Thus, narratives about two clients were merged into one.
Cases
The following cases have been reported by the counseling supervisors working under GFATM
project ‘Saksham,’ and corroborated by their counselors, who had also participated in the intervention,
after consultation/discussion with their respective counseling supervisors.
Case 1 : A Counselling Supervisor said -“There are some cases which touches our heart due to
many reasons. It may be because of our dedication or personal involvement or may be
empathy, when one puts oneself in the place of the client or the parents of the client. It
so happened with one of my counselors. One teenager, innocent and ignorant boy, shows
HIV positive result and the mother is shocked and breaks down in front of the counselor.
I was on my supervision visit when I saw that the counselor was successful in providing
comfort to the mother and counseling the boy on risk behavior, safe sex, etc. I suggested
to the counsellor that this case had provided an opportunity to inform and counsel the
boy’s friends too, (who had indulged in risk behavior as disclosed by the boy), and to
reach out to the adolescent community who were probably ignorant about HIV/AIDS
and risk behaviours and so she should also discuss with the boy on the risk of spreading
the infection by others in his group. Following the counsellor’s discussion about spreading
the virus with the boy, another good thing happened out of this case. The next day this
client brought a group of his friends, who were also ignorant and unaware of HIV
AIDS, to the counselor. All the boys were counseled to generate awareness. Two among
them disclosed about their risk behavior and they were sent for testing.”
Case 2 : “On my supervision visit I observed that the counselor under my supervision was
counseling a female sex worker and that she was found to be suffering from STI. The
client revealed that she was practicing sex without condom. I further observed that the
counselor failed to discuss regarding safe sexual practices, other than condom use,
with the client. After receiving consent, from both counselor and client, I demonstrated
counseling for safe sex to the counselor and used the opportunity to reach to the
community of sex workers through this client. I gave her all information about STI,
HIV/AIDS and about the various methods of safe sex. I also counseled her on the
importance of negotiation for safe sex, including non-penetrative sex, with each partner.
The client was motivated and seeing this I asked her to also educate and motivate her
peer group to come to the ICTC. Following this counseling session the counselor too
followed the same process and related to me that, since the intervention, FSWs were
coming to the counseling centre for counseling and free condoms.”
Case 3 : Two counseling supervisors related two similar cases. They said that counselors are
under a misconception that men-having-sex-with-men (MSM) have some significant
physical appearances, such as looking effeminate, with soft voices, womanly walk
with swaying hips, wearing ear-rings, etc., and so they did not talk about sexual identity/
sex orientation and preferences of sexual practice when a male client did not fit the
stereotype the counselor had in mind.
Both the counseling supervisors observed that the counselor under their supervision
was unable to motivate a male client to interact and disclose information about himself
to the counselor as the counselor was giving him general information about safe sex
but not going beyond that to sex orientation, etc. In both cases, the counseling supervisors
felt, while observing, that there was something which was holding the client back from
disclosing and from their long experience they felt that it could probably be an issue of
sexual orientation. So, the counseling supervisor, with consent of both client and
counsellor, demonstrated counseling by discussing about various sexual orientations,
sex identity and different types of sex practices. The client then gradually opened up
and revealed his status as an MSM. The supervisor also asked the client to inform his
friends about the availability of counseling, testing, and other facilities at the health
centre. Following this demonstration, the counselor also started to practice this
approach, with every male client, in their counseling. As reported to the counseling
supervisors, the counselor found that this type of community-level intervention through
counseling, had initiated the flow of clients from the MSM community to the ICTC for
counseling and testing.
Case 4 : Another narration–“My counselor told me that a client, who had come for ante-natal
check up, was diagnosed to be HIV positive. The husband was counseled for undergoing
HIV testing too, but the husband left the Center without testing. The counselor on his
outreach visit saw both husband and wife running and hiding in the mustard fields
when they saw the counselor coming towards their house. The counsellor returned but
went again on his second outreach visit to them but this time the villagers stopped him,
saying that because of the counselor the husband was abusing the wife and that the
counselor would be beaten up if he tried to go to their house.
My counselor related the case to me expressing his frustration and helplessness in
getting the couple for testing and ART. I suggested that it would be best to get to the
couple through the community and so he should call for a focus group discussion with
the Gaon Burha (Village Headman) and members of any clubs that may exist in the
village. He should then discuss with the community members, do advocacy and also
inform them that according to NACO, for one HIV positive person it must be assumed
that 99 other HIV positive persons probably exist. So, since a woman from their village
had tested positive, it is the community’s duty to help identify the other 99 and to
suggest to all the villagers that anybody, with symptoms of STI, may go to the local
health center for treatment. I also told him to do advocacy with the medical officer of
the health center and ask him to refer all STI patients to the ICTC.
My counselor intervened accordingly at the village level and shared with me later that
the villagers were coming to the health centre and that flow of patients had started
from STI clinic to ICTC and that the husband, who was avoiding testing, had also
come to the ICTC.”
RESULTS
The cases presented illustrate the significance of the counselor and counseling in reaching out to
specific communities, such as adolescents, FSWs, MSMs, and the general community also. It is apparent,
from the cases presented in this study, that counseling supervision is an input which provides the ICTC/
PPTCT counselor with a mentor, whose support and help, benefits the counselor in handling cases
through counseling.
The first case on adolescent counseling highlights the ignorance of adolescents on HIV/AIDS and
sexual practices in the rural areas of the state, although media interventions have been taken up by the
organizations implementing the AIDS control programmes in the country, such as NACO and State
AIDS Control Society.
A similar case is presented on the efficacy of counseling as an intervention for Female Sex Workers.
It was noted that the counselor working on the case did not give complete information on safe sexual
practices or try to build negotiation skills of the FSW until shown by the counseling supervisor. Once
counseling included these lapses the intervention was more effective and managed to impact the community
of FSWs. This case highlights the efficacy of counseling supervision too.
The cases reported regarding counseling MSMs brings into focus the cultural aspects involved in
counseling. It highlights that counselors and counseling interventions need to be free of assumptions
and to consider all aspects of gender, sexuality and sexual preference. As reported, when such aspects
are included in counseling the intervention becomes more effective and opens up the counseling facility
to the MSM community. These cases again illustrate the significance of counseling supervision.
The last case reports on the impact of the counselor as an advocate and involvement of the larger
community in HIV/AIDS prevention and control. It shows how the political and social organizations in
the rural areas can be utilized for community-level interventions. The counselor’s intervention at the
community-level and in the medical setting was effective in mobilizing the community members to
attend the health facility and access treatment. The individual, who was avoiding coming to the centre,
was also mobilized along with other residents of his village and could come to the center as just another
member of the village, his identity as “husband-of-HIV+ woman” fading away and not appearing salient.
The results/outcomes of the counseling interventions are showed in Table 1.
Table 1: Outcomes of Counseling Intervention
Client Effective Counselling Intervention Results/Outcome
1. HIV+ Adolescent; Counselling by ICTC Counsellor + Adolescent accesses ART;

ignorant about Information about spreading the Brings friends (peers) for counseling
HIV/AIDS and safe infection by peers engaged in similar and testing
sexual practices unsafe sexual activity
2. FSW infected with Counslling by ICTC Counsellor & Flow of FSWs for counseling, testing
STI; practicing unsafe Counselling Supervisor + and free condoms
sex; ignorant about information on safe sexual practices,
safe sexual practices availability of free condoms,
negotiation with each sexual partner
for condom use
3. MSM client not Counselling Supervisor demonstrated Increased walk-ins by MSM
responding to counseling by including discussion community to ICTC for counseling
counseling as general on issues related to gender, sexuality and testing.
information on safe and preferred sex practices. Client
sex practices was discloses his sexual orientation and
being given by participates in counseling.
Counsellor
4. Husband of HIV+ Advocacy by counselor in On persuasion by community
woman who had community-level meeting with leaders, residents of the village visit
come for ante-natal village Head Man and other opinion STI clinic in Health Centre from
checkup. Husband leaders + Advocacy in the health where they are referred to ICTC by
leaves center without centre. doctors. The husband too visited the
testing centre for testing with other villagers.
DISCUSSION
Counselling is an important and effective intervention in the prevention and control of HIV/AIDS.
As stated by Aggleton (1996), “…..intervention research was heavily influenced by efforts to persuade
individuals to change (or maintain) their behavior so as to minimize HIV-related risks.” These
interventions “…..aim to increase personal awareness and perceptions of risk, and provide the skills
necessary to effect behavior change. They use information, counseling, HIV testing and other services
to help individuals make appropriate choices about health-related behavior and, to act on the basis
of these decisions.”
The interventions reported here also fall in this category. However, the difference lies on the fact
that the counselor and counseling supervisor took the opportunity of counseling the individual to reach
out to their respective communities, whether it be at the peer level or the village level. The outcomes
show the efficacy of counseling as an indirect community-level intervention.
Research has been conducted widely on successful interventions for youth/adolescents and their
vulnerability to HIV/AIDS. Community based interventions have focused on HIV/AIDS education in
schools, clubs, shelters for runaways, etc. (Hobfoll, Jackson, Lavin, Johnson & Schroder, 2002; Levine,
1998; Rotheram-Borus, Koopman, Haignere & Davies, 1991). The present study, however, shows that
by counseling adolescents at the health facility, HIV/AIDS counselors can reach the adolescent groups
and the larger adolescent community. It also brings into focus the efficacy of counseling as an intervention
through which the adolescent community may be brought into the fold of HIV prevention and care.
Reaching groups of adolescents through their peers is a very effective intervention. This is so, as
adolescence is a stage of development, where peers become more important than adults for discussing
issues which trouble the young persons and for advice. It is only when an adult is recognized as
trustworthy that adolescents approach the adult because adolescents do respect the knowledge of an
experienced adult although on surface they appear nonchalant.
Community-based interventions have also been carried out for gay and bisexual men and these have
been well documented. The studies report behavior change and risk reduction among these communities
(Gutierrez, McPherson, Fakoya, Matheou & Bertozzi, 2010; Miller, Klotz & Eckholdt, 1998; Zimmerman,
Ramirez-Valles, Suarez, de la Rosa & Castro, 1997; Kelley, 1994; Kippax, Connell, Crawford & Dowsett,
1993). The results observed in the present study-of increased walk-ins of MSMs to the ICTC-reflect
the effect of community-level intervention through HIV/AIDS counseling and reiterate the value of
counseling as an important input in HIV/AIDS control, prevention and care.
In the case reported regarding counseling FSWs the intervention was similar to those of MSMs, in
the sense that information relevant to the individual as a sex-worker was discussed. But, negotiation
skills for safe sex, including non-penetrative sex, were also demonstrated to be another effective
intervention. This case illustrates peers as being positive role models to deliver credible messages and
skills to their community, as following the counseling intervention, the female sex worker took the
message to her community members, who then approached the ICTC counselor for required support.
Studies conducted in different countries have also found that community-based interventions promote
risk reduction (Gutierrez, McPherson, Fakoya, Matheou & Bertozzi, 2010; Reza-Paul et al., 2008; Alary
et al., 2002).
This case also illustrates that opportunities may be presented any time for community-level
interventions because not only the FSW peer group benefitted from the counseling but through them
their clients, who are members of the general community or bridge populations such as truckers,
migrant labourers, etc., also benefitted.
The last case on community-level intervention demonstrates the importance of interventions to be
specific to the context and also to be culture-specific. In the Indian rural set-up the village community
plays an imminent role in developing opinion and motivating behavior. In many instances individual-level
interventions may prove to be futile, as was seen in the case of the husband with a HIV+ wife reported
in this study. Therefore, community-level intervention had to include the entire village as the leaders of
the village suggested to the villagers, as a whole, to go for treatment to the health centre. The villagers,
thus, went to the health centre as a community, their individual identities not being visible and that is
why, under the cloak of anonymity, the husband of the HIV+ woman too went as a member of the
village community.
CONCLUSION
On the basis of this brief study, based on field experiences of ICTC Counselors and Counselling
Supervisors, it may be concluded that HIV/AIDS Counselling is probably one of the most effective
community-level intervention if used innovatively and specific to the context of the client.
Kanekar (2011), concluded in his research that “Multiple approaches are used by counselors in
providing education and prevention counseling to ‘at risk’ individuals and also individuals who have
been infected with the virus. No one method is superior to another and some gamut of techniques is
practiced by HIV/AIDS counselors.” In this study too it is found that counseling stresses on different
aspects, depending on the client’s context.
Further, from the cases reported in this study it is apparent that microsystem-level programs,
macrosystem social policy, and intermediate ecological levels are all important arenas for HIV prevention
(Coates, 2004).
REFERENCES
Aggleton, P. (1996). Global priorities for HIV/AIDS intervention research. International Journal of STD &
AIDS, 7 (2), 13-16.
Alary, M., Mukenge-Tshibaka, L., Bernier, F., Geraldo, N., Lowndes, C. M., Meda, H., & Joly, J. R. (2002). Decline
in the prevalence of HIV and Sexually Transmitted Diseases among female sex workers in Cotonou, Benin,
1993-1999. AIDS, 16(3), 463-470.
Centers for Disease Control and Prevention. (2013). http://www.cdc.gov/hiv/dhap/prb/prs/cl_interventions.html.
Coates, T. (2004). A plan for the next generation of HIV prevention research: Seven key policy investigative
challenges. American Psychologist, 59, 747-757.
Dalton, J. H., Elias, M. J., & Wandersman, A. (2007). Community Psychology: Linking individuals and
communities (2nd ed.). Thompson Wadsworth: Belmont.
Family Health International. (2005). VCT Toolkit. Trainers manual: Counselling supervision and training.
Gutierrez, J. P., McPherson, S., Fakoya, A., Matheou, A., & Bertozzi, S. M. (2010). Community-based prevention
leads to an increase in condom use and a reduction in Sexually Transmitted Infections (STIs) among Men
who have Sex with Men (MSM) and Female Sex Workers (FSW): The Frontiers Prevention Project (FPP)
evaluation results. BMC Public Health, 10(1), 497.
Hess, A.K. (Ed.). (1980). Psychotherapy Supervision: Theory, Research and Practice. NY: Wiley.
Hobfoll, S. E., Jackson, A. P., Lavin, J., Johnson, R. J., & Schroder, K. E. E. (2002). Effects and generalizability of
community oriented HIV-AIDS prevention versus general health promotion groups for single, inner-city
women in urban clinics. Journal of Consulting and Clinical Psychology, 70(4), 950-960.
Kanekar, A. S. (2011). HIV/AIDS counseling skills and strategies: Can testing and counseling curb the epidemic?
International Journal of Preventive Medicine, 2(1), 10–14.
Kelly, J. (1994). HIV prevention among gay and bisexual men in small cities. In R. DiClemente, & J.L. Peterson
(Eds.), Preventive AIDS: Theories and Methods of Behavioural Interventions. New York: Plenum.
Kippax, S., Connell, R. W., Dowsett, G. W., & Crawford, J. (1993). Sustaining safer sex. London: Falmer Press.
Levine, M. (1998). Prevention and community. American Journal of Community Psychology, 26, 189-206.
Levine, M., Perkins, D. D., & Perkins, D. V. (2005). Principles of Community Psychology: Perspectives and
applications (3rd ed.). Oxford University Press: NY.
Miller, R. L., Klotz, D., & Eckholdt, H. M. (1998). HIV prevention with male prostitutes and patrons of hustler
bars: Replication of an HIV prevention intervention. American Journal of Community Psychology, 26, 97-
131.
National AIDS Control Organization. http://www.nacoonline.org
Reza-Paul, S., Beattie, T., Syed, H. U. R., Venukumar, K. T., Venugopal, M. S., Fathima, M. P., Moses, S. (2008).
Declines in risk behaviour and Sexually Transmitted Infection prevalence following a community-led HIV
preventive intervention among female sex workers in Mysore, India. AIDS, 22, S91-S100.
Rotheram-Borus, M. J., Koopman, C., Haignere, C., & Davies, M. (1991). Reducing HIV sexual risk behaviours
among runaway adolescents. Journal of the American Medical Association, 266, 1237-1241.
Zimmerman, M. A., Ramirez-Valles, J., Suarez, E., De La Rosa, G., & Castro, M. A. (1997). An HIV/AIDS prevention
project for Mexican homosexual men: An empowerment approach. Health Education and Behaviour,
24(2), 177-190.
18
HIV/AIDS Counseling in India:
The Saksham Experience
– Ashutosh Srivastava & Archana Shukla
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
ABSTRACT
This chapter traces the history of HIV/AIDS counseling in India starting from the year 1986
with the establishment of National AIDS Committee, a little later known as NACO, to the
coming into being of Saksham (GFATM-R7) project in 2008 and its uniqueness in terms of
partnering with 38 Institutions of higher learning, enhancing infrastructure and human resource
capacities of these Institutions, assisting the national program for standardizing and up
scaling ICTC counselors’ Induction and Refresher trainings, and starting for the first ever
time in India a systematic mentoring / supervision of ICTC/STI counselors.
INTRODUCTION
National AIDS Control Program (NACP) in India over the last two decades has focused on
different aspects of the HIV epidemic in its efforts to contain the spread of the disease and to
provide treatment, care and support to those infected. The counseling services have been an essential
feature of the NACP. This article traces the evolution of the HIV/AIDS counseling services in India
over the years.
The first presence of HIV/AIDS was detected in India in 1986. Then it was believed that India had
little to fear from a disease that was by then understood to spread primarily through sex between men,
injecting drug use and through multi-partner heterosexual sex. It was thought that people in India do not
engage in these risk behaviors and therefore had nothing to fear. In the year 1986 the government set up
an AIDS Task Force under the Indian Council of Medical Research (ICMR) and established a National
AIDS Committee (NAC). In the next four years the program focused on the screening of the “sexually
promiscuous population” and professional blood donors. Some educational programs were also started
during this period.
National AIDS Control Program

In the year 1992 the National AIDS Control Organization (NACO) was established as a division of
India’s Ministry of Health and Family Welfare. NACO took the leadership of HIV/AIDS control programs
in India in collaboration with 35 HIV/AIDS Prevention and Control Societies and became the nodal
organization for formulation of policy and implementation of programs for prevention and control of
HIV/AIDS in India.
National AIDS Control Program-I (NACP-I) was the first organized effort by NACO in India to
develop a national public health program for prevention and control of HIV/AIDS. In India, HIV/AIDS
counseling is a recent phenomena having started and developed in the last two decades. National AIDS
Control Program (NACP) since its initiation in 1992 has been working towards controlling the spread of
HIV/AIDS infection in the country and providing care to the people infected and the affected with HIV/
AIDS. The national program has underscored the value of counseling services as a key in the fight
against HIV/AIDS.
The second phase of the program (NACP-II) operated from 1999 to 2007. NACP-II aimed to
reduce the spread of HIV infection in India through behavior change and at the same time increase the
ability to respond to the infection. The nature of HIV epidemic in the country necessitated a change in
approach. NACP-II therefore expanded from its primary focus as a program generating mass awareness
on HIV prevention to a program based on targeted intervention approach. The targeted intervention
approach intended at checking the spread of disease from high risk behavior population to general
population through behavior change. The High Risk Group (HRG) includes female sex workers, men
having sex with men, injecting drug users, street children, prisoners, and mobile populations such as
truck drivers and migrants. With the help of non-governmental organizations (NGOs) the interventions
were targeted at these groups. To bring about a change in behavior the NGOs involved educators for
counseling, used social marketing to distribute condoms and provided information to encourage change
in high risk behaviors- the “behavior change communication” or BCC. Alongside, NACP-II continued
with its programs for generating mass awareness among general population. Again the value of the
counseling in HIV programs was realized and counseling services were expanded beyond the Voluntary
Counseling and Testing Centers (VCTCs) located at medical colleges and counselors were appointed at
the TI centers and district hospitals.
The Voluntary Counseling and Testing (VCT) services were started early in NACP-II, to provide
different type of HIV/AIDS related counseling to people infected and affected with HIV/AIDS. Counseling
and testing enabled those at risk to know their HIV status and seek treatment which was becoming
available more widely. VCTCs also provided referrals to services for treatment and care. Services for
the prevention of mother to child transmission of HIV, and for the provision of antiretroviral drugs to
people with AIDS, became linked to the VCTCs as and when these were instituted by the government.
The Program for Prevention of Mother to Child Transmission or PMTCT soon became Prevention
of Parent to Child Transmission or PPTCT as it was realized that the source of an infant’s HIV infection
goes beyond a mother, even though this is how initially it may seem, as she could in turn be a hapless
recipient of this infection from her sexual partner(s). PPTCT aims to prevent the transmission of HIV
from pregnant, HIV-positive women to their children. They offer pregnant women testing for HIV and
provide drugs and advise those who are HIV-positive. Towards the end of the program, PPTCT centers
HIV/AIDS Counseling in India: The Saksham Experience 247
were combined with VCTCs to form Integrated Counseling and Testing Centers (ICTCs). By November
2006, the no of VCTC has gone up from 79 VCTC in 1998 to 3,396 such ICTCs in the country. It has
today reached to some 9448 ICTCs across India (State Fact Sheet, NACO, 2012).
In the context of HIV/AIDS, counseling and testing services are the most critical in providing
treatment and care to people infected and affected with HIV and preventing people from contracting
infection. Figure 1 provides an overview of the HIV/AIDS service delivery framework designed by
NACO. At the Integrated Counseling and Testing Centers (ICTC) people get access to accurate information
about HIV prevention and care and get their HIV status tested in a supportive and confidential environment.
NACP in its each successive phase has kept the HIV/AIDS counseling services pivotal to checking the
spread of disease, expanded its horizons to include behavior change, increased decentralization by
setting up State AIDS Control Societies (SACS) in the various States, involved NGOs, adopted a national
blood policy and offered ART treatment for both adults and children.
Figure 1: The HIV/AIDS Care Continuum

(Source: ICTC Induction Training Manual, NACO 2007a)
NACP-III (2007-2012) made the promise to provide treatment for opportunistic infections (such
as TB and fungal infections), and first-line antiretroviral drugs to those adults and children who
qualify to receive ART according to the established medical criteria. In February 2008, the government
introduced second-line drugs to those who have become immune to the first-line drugs (NACO,
2007b). Under NACP-III efforts were made to integrate and scale up all HIV/AIDS linked services to
sub-district and community level. All 611 districts in the country have been graded into four categories
and the package of services in a particular area is based on the prevalence in that area. Community
health centers and primary health centers are promoting condom use, offering counseling and testing
for HIV, and providing PPTCT services, treatment of STIs and of opportunistic infections. Counseling
services were also started for improving the drug adherence, information on nutritional needs and
referral for other treatment.
So far, there has been little support for the approximately 50,000 children below 15 years infected
by HIV every year. NACP–III has promoted early diagnosis and treatment of HIV exposed children,
developed comprehensive guidelines on pediatric HIV care, trained counselors for counseling HIV-
positive children, provided links to programs for social support for infected children, gave subsidies to
facilitate ART and follow up, and enforced the minimum standards of care and protection of children in
institutions and foster care.
The current phase of NACP, NACP IV (2012-2017) incorporates the twofold objectives of reducing
new infections by 50% and providing comprehensive care, support and treatment to all persons living
with HIV/AIDS. NACP IV also aims at working closely with the Department of Health and Family
Welfare towards integration of HIV/AIDS services into the larger health system, with the objective of
optimal utilization of existing NRHM / RCH resources for strengthening NACP services, and vice versa.
The key Strategies under NACP-IV are: intensified and consolidated preventive services; increased
access and promotion of comprehensive care, support & treatment; expansion of IEC services; capacity
building; and strengthening strategic information management system.
Collaborations
National AIDS Control Program is working with various types of organizations for prevention of
HIV/AIDS and providing treatment, care and support to the infected and the affected people. NGOs,
community based organization (CBOs), women’s groups, youth groups, trade unions, private sector;
civil society organizations such as Avert Society, SIAAP, Hamsafar Trust, HIV/AIDS Alliance, Durbar,
etc, networks of people living with HIV/AIDS, government departments and academic institutions are
encouraged by the national program to integrate HIV prevention into their activities and to also support
the national program.
The Human Resource Development for HIV/AIDS Counseling
NACO’s Technical Resource Group on HIV/ AIDS counseling in 2000 identified the variety in
standards of counseling training in different parts of country. The group also emphasized the need for
standardizing and improving quality of training in order to enhance quality of HIV/AIDS counseling in
India. It was also observed that facilities and trained personnel available were inadequate to address the
load and range of complex issues relating to HIV counseling. The Technical Resource Group (TRG)
also noted the need to develop a cadre of counselors to address counseling issues/requirements of HIV
patients at different levels. In addition to dedicated counselors, other health care providers also needed
to develop counseling skills to provide services at the PHC levels and to offer care and support for
people living with HIV/AIDS or PLHA. With the advent of ART, HIV infection has assumed the profile
of a chronic disease that requires a continuum of care. There is need for sustained behavior change and
emotional support as part of health care as well as specialized counseling services in the event of acute
stress, depression or crisis. A particular gap in the area of counseling was the availability of such experts
in handling Injecting Drug Users (IDUs), or men having sex with men (MSM) that requires specialized
skills and competencies. During NACP III it was expected that ART will have to be provided to some
340,000 persons living with HIV/AIDS, 350 Community Care Centers will have to be set up and their
linkages with targeted interventions have to be strengthened and around 5000 ICTCs will have to be
established (NACO 2007c). In addition to this the TRG expected a demand from private sector facilities
which are now providing treatment and care to PLHA and others suffering from related mental ailments.
The scaling up of prevention and care services up to sub-district level was envisaged through scaling up
the convergence with RCH (NACO, 2007c).
The scaling up of services in NACP III identified the huge gap in terms of good human resources
needed for the successful implementation of the program. The strategies implemented to bridge the
gap in human resources were (1) creation of new posts within the government system to meet the
new challenges; (2) outsourcing of services to institutions and/or technical experts, and (3) enhancing
the capacity of existing staff through training. To support the strengthening and the capacity building
initiatives a human resource development policy consisting of financial and non-financial incentives
was developed by NACO (NACO 2007c). Training needs, process, infrastructure, quality and
monitoring and evaluation of effectiveness of training etc linked to program outcome were developed
and implemented.
Counselor Training Programs
Up scaling the service entails the development of a cadre of counseling functionaries at different
levels of health care to meet the demand for trained counselors and the strengthening of existing
manpower through institutional capacity building. The task of enhancing and up scaling the counseling
and testing services for HIV is contingent upon the availability of trained human resources and training
institutions for building up such human resources. The nature and extent of the scale-up planned
under NACP III required that the infrastructure and human resources for counseling training be also
appropriately enhanced.
The quality training of counselors was a big challenge in front of NACP. Strengthening the capacity
of the existing training institutions was expected to fill this demand-supply gap of counselors by providing
effective counseling training.
THE SAKSHAM PROJECT

The term Saksham comes from a Hindi word that means, “Capable” or “Self- reliant”. Saksham
is the National identity of the GFATM-R7 Project in India. GFATM-R7 is an abbreviation for Global
Fund to fight AIDS, TB and Malaria – Round 7. Global Fund is an international organization based
in Geneva. Global Fund has approved some 161 grants across the globe in 2012 and is currently
supporting the national health systems of more than 140 countries. The Saksham project is supported
by the Global Fund to enhance the institutional capacities of key counselor training Institutions to
undertake capacity building and counseling supervision for counselors under the National AIDS
Control Program.
Quality of life
of PLHIV
Quality
counselling
services to clients
Quality training &

mentoring to counsellors
Figure 2 : Saksham Program Outcome Model
The Genesis of Saksham: Proposal and Grant

In 2007 the six counselor training Institutions-IHBAS, New Delhi; SNDT University, Mumbai;
Lucknow University, Lucknow; TISS, Mumbai; Bangalore University, Bangalore; and RIMS, Imphal
- were invited by NACO to rise up to the challenge of writing a national level proposal for strengthening
the counselor training system in India. The Institutions wrote the proposal and submitted it to NACO.
NACO submitted the proposal to Global Fund, got it back, revised and rewrote the proposal and
re-submitted the same to the Global Fund which approved the proposal in 2008 which is now known
nationwide as the ‘Saksham’. Saksham, for the last six years, have been conducting HIV/AIDS
counseling training programs for ICTC counselors and have also started in the last three years
supportive supervision programs for these counselors. The structure and functional relationship of
Saksham is depicted below in Fig. 3.
TISS
Mumbai
Jamiya Miliya RIMS Lucknow Osmania

CARAT, TISS Nirmala Niketan
Islamiya Imphal University University
Mumbai Mumbai
Delhi Lucknow Hyderabad
Calcutta DDU Gorakhpur HNB Garhwal

XIMB NISWASS Vishva Bharti University University
Bhubaneswar Bhubneswar University Shantiniketan
Kolkata Gorakhpur Srinagar
Figure 3: Saksham Operational Structure

Partners
The Saksham Project is characterized by a unique partnership between 38 academic institutions that
are working in close coordination with the public health system — NACO and SACS. Tata Institute of
Social Sciences (TISS) is the Principal Recipient (PR) working in partnership with six Sub Recipients
(SRs), Lucknow University-Lucknow; Jamia Milia Islamia-Delhi; Osamania University-Hyderabad; RIMS-
Imphal; CSWNN-Mumbai and CARAT at TISS-Mumbai, and 32 Sub-Sub-Recipients (SSRs) located in
24 states, NCR and Union Territories (Appendix 1). With the roll out of Counseling Supervision program,
Saksham now has an all India outreach. Saksham has successfully completed its Phase I and II and has
now moved into another phase of extension with renewed energy, enthusiasm and commitment. The
operational structure of the Saksham project is demonstrated in Fig. 3.
The collaborative processes of Saksham with National AIDS Control Organization (NACO) and the
various State AIDS Control Societies (SACS) have been strengthened over the last six years with the
aim of contributing positively to the HIV/ AIDS counseling program in India.
Since the complex nature of HIV epidemic calls for a multidisciplinary, multi stakeholder and integrated
response, the Saksham teams in partner Institutions have been building close collaborations, networks,
and alliances with experts from the field, NGOs, Positive People’s Networks, civil society agencies and
bilateral and multilateral organizations. These partnerships have been mutually beneficial for enhancing
capacities, reviewing strategies, sharing insights, building resource materials, bridging gaps and organizing
campaigns, advocacy and outreach activities.
The Saksham program has built strong public - public partnership. Partner institutions of higher
learning are collaborating closely with NACO and SACS to strengthen the HIV/AIDS counseling program
in the country. Saksham has incorporated the diversity and richness of local contexts, systems,
experiences, as well as the strengths and challenges ensuing from all these partnerships.
TCS and the E-Monitoring System
Figure 4: Location of Saksham Training Institutes

(Source Saksham Website)
Tata Consultancy Services (TCS), with help and guidance from the National Project Director (NPD)
at TISS and some SR Faculty-in-Charges (FICs), has developed for Saksham a very advance Management
Information System to monitor and evaluate program outputs and outcomes. In addition to this a
sophisticated user friendly Financial Management System (FMS) and a Knowledge Management System
(KMS) are being used to link all 38 partners and provides integration with MIS on a real time basis. The
KMS welcomes all those concerned with the HIV/AIDS related issues and can be accessed at
www.tissgfatmr7.com
The 38 Training Institutions

Saksham, the GFATM Round 7 project on the Counseling Component in India is being implemented
by Tata Institute of Social Sciences, as the Principal Recipient (PR) and 38 other institutions of higher
learning as Sub-Recipients (SRs) and Sub-Sub-Recipients (SSRs). Country wide location of the Saksham
Institutes is given in Fig. 4. This is the first time in the history of the Global Fund that a consortium of
academic institutions such as Universities, Medical Colleges and Management Institution have been
implementing a GFATM grant. The Saksham program team is multi-disciplinary as the departments of
psychology, social work, psychiatry, sociology, education, community health, behavioral sciences,
management and medical sciences of partner institutions have joined hands to make this program a
success. Each of these Institutions has a dedicated program team, with specified roles and responsibilities.
Saksham is committed to transparency and accountability and follows GFATM’s performance
framework, data quality measures and risk management processes. Core principles that guide Saksham’s
program implementation are evidence based planning, results with integrity, commitment to quality,
non-duplicative work, close alignment with the national program, value for money and the ‘rights’
framework. Saksham is committed to the vision of “an India where every person living with HIV has
access to quality care and is treated with dignity.”
The Saksham Team

The Saksham team is a pool of well qualified and trained professional coming from Psychology,
Social Work, Psychiatry, Sociology, Management, Public Health and other allied fields. This team consists
of one National project Director (NPD), some 40 Faculty In-Charges (FICs) and 173 dedicated project
staffs working at the various training institutes located across the length and breadth of India.
Service Delivery Areas

Saksham aimed at enhancing capacities - both infra structure as well as human resources - of
institutions of higher learning for conducting HIV/AIDS counseling training programs in India. It is
committed to responding to the needs of the national program with regards to HIV/ AIDS counseling
training through
• Enhancement of the quality of trainers;
• Improvement of the quality of training infrastructure and training systems; and
• Support and supervision of training institutions and counselors.
Saksham’s service delivery model is elaborated in figure 5.
Figure 5 : The Saksham Service Delivery Model
Saksham’s Contributions to National Program

In the five years of the Saksham Project, following have been its major contributions:
1. Capacity Building : Enhancement in the capacity of academic institutions in undertaking
HIV/AIDS Counseling training has been achieved. Now, trained master trainers are available
across India to conduct training of HIV counselors. Though Saksham aimed at training 12000
counseling individuals, more than 16000 individuals have been trained to take up HIV/AIDS
counseling across 25 states of India in the last 6 years. A very unique supportive supervision
system for counselors has also been established. Counseling supervisors trained by the Saksham
project are providing mentoring to the ICTC counselors. Good Practices centers/Learning
sites have also been identified and linked with each training institutes.
The infrastructural capacities of the partner institutions have also been considerably upgraded
to enable these training institutions host 12-days Induction and 5-days Refresher training
programs for Counselors, Master Trainers, Counseling Supervisors, etc.
2. Quality Assurance : A Quality Assurance System (QAS) has been set up to ensure the
minimum standards of the counselor training programs. The QAS is a peer review model
introduced for the first time in India to ensure the quality of HIV Counseling Trainings programs.
Till date, 135 training programs conducted by the partners have been monitored for quality.
3. Generation of Resource Material : An excellent Knowledge Management System based on
the shared learning model has been developed by Saksham. A wide range of HIV/AIDS counseling
resource material like manuals, handbooks, audiovisual aids, e-learning courses and self
study material has been developed for master trainers, supportive supervisors and counselors
(www.tissgfatmr7.com/kms).
Beneficiaries
Saksham has benefitted a wide range of people/institutions over the last 6 years. Some of these
have directly benefitted from the Saksham activities (such as Master Trainers, Counseling Supervisors,
Counselors, Training Institutions, etc.) while others (such as vulnerable groups, general population
and people living with HIV/AIDS and IDU, end users/clients and their spouse/partners and families)
have been the indirect beneficiaries by way of receiving quality services by trained people with
enhanced capacities.
The Saksham Master Trainers : A Resource Pool because of Saksham
Good trainers play a very important role in any capacity building initiative. Saksham has identified
and trained more than 700 MTs to take up sessions during the HIV/AIDS counseling training programs.
They are linked with the training institutes located in 24 states, NCR and one Union territory of India.
The Master Trainers focus on both delivering appropriate content as given in the NACO Manual as well
as using various interactive pedagogical methods during the trainings. Though these MTs are employed
in other Institutions, they readily agree to conduct training sessions to the groups of counselors who
come for Induction or Refresher training to Saksham Institutions. Saksham ensures that the capacity
building of MTs continues to be an ongoing process and MTs are abreast with the latest developments
in the field of HIV/AIDS. With this aim TISS, the Saksham PR, has arranged for MTs from all over India
various training programs at NIMHANS, TAARSHI, Samraksha, YRG Care, Goa by Dale Carnegie
Trainers and also at TISS. Saksham has trained the Master Trainers through induction training, refresher
training and field exposure visits. Now Saksham MTs are extending their training services to government/
public health units, SACS, NACO, as well as other organizations working on HIV/AIDS related issues.
This resource pool is available locally and it is hoped that they will continue to be utilized even beyond
the Saksham tenure.
Start of Supportive Supervision Program – A New Beginning
Saksham has demonstrated its commitment to improve the quality of HIV /AIDS counseling in India
and has thus established a system which brings in experienced and trained people to support and supervise
HIV/AIDS counselors in the field. These mentors are called “Counseling Supervisors” (CS) or “Supportive
Supervisors” (SS). Objectives of the Saksham’s Counseling Supervision Program are to:
• Build partnership with counselors to enhance the quality of counseling services;
• Provide on-site mentoring to strengthen the knowledge, skills and attitude of counselors;
• Increase accountability of counselors;
• Help the counselors evaluate and track progress in their own counseling work; and
• Identify areas for improvements and support the counselors to continue to grow professionally.
The CS program has been the primary activity of Saksham in Phase- II, starting from 2011. It
aimed to reach out to all the ICTC counselors across the country. Saksham is implementing this program
in coordination with the SACS in each state and NACO.
The capacity of around 1400 supervisors has been built to take up counseling supervision. Each
supervisor is mentoring 5-7 counselors during their once-a-quarter visits to these counselors. The
supervisors have provided mentoring to more than 4500 counselors till now. These visits are once in
three months and lasting for 3-4 hours with one counselor at a time at each ICTC. Counseling supervisors
observe the ongoing counseling sessions, give feedback to the counselors about the session observed as
well as discuss the difficult cases to generate options.
The Counseling Supervision is a great value addition to the National AIDS Control Program. This
program has given an opportunity to counselors to ventilate their feelings, air their concerns, update
their HIV/AIDS knowledge and counseling skills, seek help for difficult cases, and get help for
improvement in the quality of their routine work, thus leading them to offer more quality services to
their clients.
The Gains and Challenges: LU’s Experience as a Saksham SR
The Department of Psychology at Lucknow University is one of the Sub Recipient (SR) responsible
for implementing the project across the four states of Odisha, Uttar Pradesh, Uttrakhand and West
Bengal and now also at one Union Territory – Andaman & Nicobar. Lucknow University (LU) is working
in close coordination with six other institutions of higher learning in these four states for implementation
of the Saksham project. These six Institutions or Sub-Sub Recipients (SSRs), are DDU Gorakhpur
University from UP; HNB Garhwal University from Uttrakhand; NISWASS and XIMB from Odisha; and
Calcutta University and Visvabharti Shantiniketan from West Bengal. At each institution, the project
contract is signed by the Faculty-In-Charge or the FIC and the Registrar, so that the University also
shares the ownership and engages with trouble shooting.
In addition to developing a close bond with these six training Institutions, LU is constantly making
efforts to develop a healthy and functional relationship with five State AIDS Control Societies (SACS)
and NACO. In the past five year while implementing this project LU has also networked with a wide
range of organization in the State of UP and is working with them.
Saksham, in its true sense has produced a pool of capable staff, master trainers and supervisors for
organizing the quality training programs for counselors. This human resource pool is available at LU &
its SSRs and the same can be utilized to meet the training needs of Public Health System across these
States in future as well.
The partnership of LU with Saksham has increased the credibility and social visibility of LU as a
training institute not only for the HIV counseling related issues but for other socially important issues
(Patnaik, 2013). The Saksham team at LU is now conducting trainings for Ministry of Women & Child
Development, Department of Police Training, Kendriya Vidyalaya Sangthan, NIPCCID, etc.
Saksham at LU, during the last six years, has not only increased the awareness of HIV/AIDS and
counseling related issues within the training institutes but had also spread the knowledge to the remote
area through our well trained counselors, master trainers and supportive supervisors.
Challenges
Universities have their own systems and pace of working. Performance based grants like GFATM
demand for a time bound and transparent systems. Developing a middle path between the two systems
of Lucknow University and the Global Fund been a major challenge for us at LU. A lot of efforts had to
be made by the LU partners to convince the University/Institutional Authorities to adapt and realign to
the new systems expected by the Global Fund.
There also have been times when the University calendar/workload clashed with the scheduling of
Counseling Training by SACS / NACO. Considerable goodwill has to be effortfully and continuously
developed with the Governmental agencies in order to re-negotiate and reschedule the training programs.
Convincing, persuading and retaining MTs and CS has been another very challenging process.
Besides, the same has to be ongoing. To lose interest with time is a common human tendency. Most of
the master trainers and counseling supervisors come from academic institutions and NGOs. Their
association with Saksham is voluntary and part time. Some times their personal/professional commitments
take precedence over their commitment to Saksham. Saksham has to keep devising ways to continue to
engage them through a range of activities such as training programs, orientation programs, review
meetings, etc. These activities help them maintain their motivation and commitment to undertake Saksham
responsibilities. Yet, some of them discontinued their association with Saksham for their own respective
reasons while some were dropped by the Saksham for a lack of suitable temperament and skills and for
not meeting the required performance standards.
A similar effort is also being made to keep the project team charged and motivated. Saksham is a
very demanding project. It requires lot of multi tasking, coordination, relationship building, timely reporting
and vigilance. Due to the nature of the project, some of the team members at times appear burned out.
A series of workshops, meetings and small get together are organized at beautiful yet inexpensive scenic
locations to keep the project teams energised. Three such workshops were conducted at Simla in 2011,
Port Blair in 2012 and Gangtok in 2013.
Change is the only constant. Saksham at LU has experienced change in officials at SACS, authorities
at Universities/Institutions, and staff at the LU and its SSRs. Only at Lucknow University 5 Vice
Chancellors, 4 Registrars, 6 Finance Officers and 4 HODs, 8-9 project team members in addition to
several senior UPSACS personnel have changed in the past 6 years. Every time there is some change in
the University/Institutional authorities the pace of the project work has slowed and considerable renewed
efforts have to be expanded toward apprising them and making them realize the value of the academic
and social contribution made by Saksham. With every such change, explanations and familiarization
efforts had to be started from the very basics. It is like rebuilding the Rome and that too within the time
bound performance framework of the GFATM.
We humans are political being. Six years is a long time to remain politics free. Saksham at LU has
also experienced occasional instances of internal politicking among the SSRs, and within and between
the Saksham teams with respect to finances, work load, and personal preferences and alliances. At
times these can be attributed to the communication problems due to triangulation of information flow
between various stockholders i.e. SSRs, SR/ PR, and SACS/NACO. We did not expect this and therefore
were not perhaps prepared for this. We now realize that such aberrations cannot be completely wished
away. Being proactive and offering evidence based explanation could be a good strategy for addressing
the same.
To conclude, in spite of the challenges, debates and the disagreements the Saksham experience has
provided us a valued opportunity for working on an array of HIV/AIDS related issues and to utilize the
strength of the Institutions of higher learning. We have indeed emerged more ‘SAKSHAM’ in terms of
our training pedagogy, sensitivities, networking, negotiation and financial and M&E reporting skills. Our
other two joys during the Saksham tenure are that we got to travel for work to various parts of our
beautiful country and could meet some very gracious people relationships with whom we will continue
to cherish even beyond Saksham. We have shared our experiences in the hope that the same would
possibly encourage others working in the area of HIV/AIDS and similar issues to develop inner strength
and conviction about the set goals and not be scared of taking the road less travelled.
REFERENCES
Patnik, G. (2013). Vice Chancellor’s Welcome Address. Convocation 2012, Lucknow University, Lucknow.
NACO, (2009-10; 2012-13) Annual Reports http://www.naco.gov.in/NACO/Quick_Links/Publication/
Annual_Report/
NACO, (2007a), ICTC Induction Training Manual, http://www.naco.gov.in/NACO/Quick_Links/Publication/
Basic_Services/
NACO, (2007b), Operational Guidelines: Targeted Intervention Under NACP III http://www.naco.gov.in/NACO/
Quick_Links/Publication/ME_and_Research_Surveillance/
NACO, (2007c), Operational Guidelines for Integrated Counseling and Testing Centers
NACO, (2012) State Fact Sheet - March, 2012 (Date Uploaded: 22/05/2012) http://www.naco.gov.in/NACO/
Quick_Links/Publication/State_Fact_Sheets/
Saksham Website http://tissgfatmr7.com/homepage/index.php
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Counseling for HIV / AIDS

Chapter · May 2015

HPTN 052 View project

AYUSH study View project

The user has requested enhancement of the downloaded file.

With effective counseling the clients becomes empowered and able to …

Types of Counseling in HIV/AIDS

HIV counseling can be classified into various types as follows:

We can list out these skills as follows:

Sample of the Document following SOAP Format:

Monitoring and Evaluation of Counseling Services

Qualitative Textual Evidence

Quantitative Numeric Evidence

Figure 1: Qualitative Textual Evidence

Mental Health and HIV Disease

Figure 2 : Snapshots of various joint sessions for an HIV infected

Figure 3 : Training sessions for significant other.

The psycho-educational module B (individual index session) comprised of following

Scale Baseline Endline

Table 2: Anxiety, Depression, Mental Health Needs and

Psychological Standard Experimental Standard Experimental

Figure 1 : Ecological Levels of Analysis for Community Psychology

With this objective in mind the research questions posed were :

Client Effective Counselling Intervention Results/Outcome

1. HIV+ Adolescent; Counselling by ICTC Counsellor + Adolescent accesses ART;

National AIDS Control Program

Figure 1: The HIV/AIDS Care Continuum

THE SAKSHAM PROJECT

Quality training &

Figure 2 : Saksham Program Outcome Model

The Genesis of Saksham: Proposal and Grant

Jamiya Miliya RIMS Lucknow Osmania

Calcutta DDU Gorakhpur HNB Garhwal

Figure 3: Saksham Operational Structure

Figure 4: Location of Saksham Training Institutes

The 38 Training Institutions

The Saksham Team

Service Delivery Areas

Saksham’s service delivery model is elaborated in figure 5.

Figure 5 : The Saksham Service Delivery Model

Saksham’s Contributions to National Program

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