A CROSS SECTIONAL STUDY OF CHALLENGES

& BARRIERS OF PSYCHO – SOCIAL

ADJUSTMENT TO HIV POSITIVE STATUS FACED
BY HIV POSITIVE ADOLESCENTS

By
Dr. Nilesh R. Prajapati

Under guidance of
Dr. Ilesh Kotecha
 INTRODUCTION

• Adolescents AIDS Scenario

• The world currently holds the largest generation of young people in
history, with 1.8 billion adolescents and youth making up one
quarter of world’s population.
• Adolescents constitute 22% of India’s population. There are total
5.8 million people living with HIV in India, 2018. Over 35% of all
reported AIDS cases in India occur among young people in the age
group of 15-24 years. The government of India, in the national
youth policy, defines adolescent’s age group as 10-19 years. NACP
aims to provide “universal access to comprehensive equitable,
stigma free, quality, support and treatment services to all people
living with HIV.
• In 2018, There are 110000 adolescents(10-14) living with HIV, the
vast majority of whom acquired HIV through vertical transmission.
Unfortunately, many young people aged 10-14 remain unaware of
their HIV status.
 AIMS & OBJECTIVES
• AIMS: To study the psycho- social adjustment & factors
affecting it among HIV positive adolescents at an urban setup.

• OBJECTIVES :
• To document the factors affecting the psycho- social
adjustment to HIV Positive status among HIV Positive
adolescents. (Quantitative component)
• To document the physical & social issues faced by HIV
Positive adolescents. (Quantitative component)
• To elicit special issues of adolescents livings with HIV in
relation to the factors identified. (Qualitative component)
 MATERIAL & METHODS

• It is a hospital based study integrating Qualitative &

Quantitative methods among adolescents living with HIV &
attending ART centre.
• Study area: ART centre, Jamnagar (Tertiary care institute)
• Study population: Adolescents between age group of 10-19
years who were registered at ART centre, Jamnagar.
• Study period : August’2019 to February’2020
• Inclusion criteria:
• Quantitative data: participants who were in the age group of
10-19 years registered at ART centre. Participants who were
alive, on pre-ART/ART and their status had been disclosed
and gave consent for the interview were included in the study.
• Qualitative data: participants who were HIV infected, who
gave consent for the details interview and whose caregiver
gave consent for the interview were included in the study for
In-depth Interview. Doctor and counsellor working at the ART
were included for the Key Informant Interview.
• Exclusion criteria:
• Quantitative data: participants who were transferred out, lost
to follow up or dead.
• Qualitative data: participants who were HIV infected,
transferred out, lost to follow up or dead.
• Sample size & Sampling: since there is a quantitative &
qualitative component of the study, sample size and sampling
were separately dealt with.
• Quantitative component
• For the quantitative component of the study: There were 108
HIV positive adolescents registered up to February, 2020 at
ART Centre, Jamnagar (Tertiary care institute).
• Out of 108 HIV positive adolescents , I approached 84
adolescents during their regular monthly follow up visit for
treatment and counselling at ART center.
• 24 subjects from ART register were not included in this study
because either lost to follow up at ART center or death.
• Out of 84 subjects only 77 were disclosed their HIV status
and consented to be enrolled and interviewed under the study.
• Pretested semi –structured questionnaire provided to
participants which containing socio-demographic information,
issues during transition for adjustment within the family &
society & status disclosure were filled up for quantitative data.
• Qualitative component
• For the qualitative component, doctor & counsellor working at
ART Centre, were approached for the key informant interviews
and Out of 77 participants, HIV infected adolescents and their
caregivers were chosen with consent by purposive sampling for
in-depth interviews. After interview I found same types of answer
from participants from which I created 7 groups of participants
who had similar types of response and I selected one participants
from each group, therefore total 7 participants were included in
qualitative analysis. Interviews were conducted in separate room
at ART centre so that confidentiality was maintained.
• Study tools :
1. Structured questionnaire
• Pre-validated structured questionnaire was adopted from the
research paper of same topic done in community medicine
department, GMC, Surat.
2. Mental Adjustment to HIV scale (MAHIVS)
• Mental adjustment to cancer scale (MACS) was developed by
Greer, Young, & Watson (1998) as a means of assessing the general
adaptation of individuals with life threatening illness , provides a
comparison with data from participants with cancer. Mental
adjustment to cancer scale was modified by Kelly, Raphael,
Burrows, Kernutt, Burnett, Perdices & Dunne (2000) for use in
those diagnosed with HIV infection to make the scale applicable &
suitable for use with HIV positive population (Mental Adjustment to
HIV Scale).
3. Modified HIV Stigma Scale
• In the late 1990s, Sowell et al (1997) developed a 13 item scale
designed to measure the phenomenon of HIV stigma.
• Statistical Analysis:
• Data was entered in MS EXCEL 2007. Qualitative data was
analyzed manually. Transcripts were coded & 5 themes generated.
• Quantitative: Mean and standard deviation were calculated for
continuous variables.
• Qualitative: Total 7 in-depth interviews were conducted of the
participants & their caregivers. It was conducted in two local
languages (Gujarati or Hindi). Key informants interview of doctor
(1) & counselor (1) were conducted. All interviews were audio
recorded & transcribed. Transcribed were then translated from the
local languages into English.
• Informed consent:
• All eligible participants were individually given an initial
description of the proposed by investigator. Interested parents/ care
givers were then presented a written informed consent form. After
explaining participant information sheet & consent form in local
(Gujarati & Hindi) language, informed written consent of parents/
caregivers was obtained.
• For conducting in depth interviews separate consent was obtained
for audio recording of the interview.
• Ethical issues considered:
• Study was approved by Human Research Ethics Committee
( Institutional Ethical Committee), Dated 13/08/2019
• Study was also approved by NACO ( National AIDS Control
Organization) Dated 21/09/2019
OBSERVATIONS
Table 1: Socio-demographic profile among
participants
 Table 2: Distribution of Participants
according to their Family background
Table 3: Distribution of participants
according to Clinical History
 Table 4: Distribution of participants
according to Anthropometric Measurements:
 Table 5: Distribution of participants
according to their HIV-Positive Status
Disclosure and related information:
 Table 6: Distribution of participants
according to their transition process to Adult
Care:
 QUALITATIVE ANALYSIS

• Summary from key-Informant interview

• Doctor
• Male, aged 48 years, working as Medical officer at the ART
Centre since 2006, trained in HIV Medicine was interviewed and
was asked about the common issues faced by HIV positive
adolescents. The most common problem faced by them is viral
infections of upper respiratory tract. Minor ART drug related
issues (side effect) like malaise, nausea & diarrhea are observed
which are easily treated with medications on OPD basis. Some
may develop side effects like severe temporal / frontal headache
and prolonged fever because of drugs tenofovir & abacavir and
for that they been hospitalized for treatment usually for 2-3 days.
• Counsellor
• Female, aged 38 years, working at the ART Centre, since 2012
trained in HIV counseling and was interviewed about adolescent
HIV. When the child first comes to know about the disease,
mostly they are accompanied by their parents, if the child is such
that he hates to take a single tablet when suffering from fever, &
they are told about a lifetime treatment, it often become a difficult
situation. They will look at the mother or father, & ask ‘how will I
take treatment daily?’ they are more worried about tablets
consumption than the disease & its consequences.
• They need to be counselled repeatedly till they have the
acceptance of their status, regardless of whether they are on ART
or Pre-ART. if the patient is healthy, he/she would not be ready to
accept that they are sick & they need to take the treatment or get
tested regularly. When they suffer from opportunistic infection, or
some other physical illness, they will start accepting the status.
• Summary from In-depth interview
• In-depth interviews – out of 7 participants, 3 were male & 4
were female. main themes observed were :
1. Loss of parents
• Out of these 7 participants, 5 were orphan. They would have
lost either one of the parents or both of the parents. In the
quantitative analysis, one of the major predictors for
hopelessness was found to be loss of both the parents.
2. Stigma and Discrimination:
• Adolescents identified the stigma and discrimination they
encountered in many community settings as a significant
factor affecting their quality of life. They described both actual
experiences of discrimination based on their HIV status, as
well as how their fears of potential discrimination affected
their decisions regarding disclosure of their status:
3. Medication adherence (daily medication intake)
• Most of the caregivers mentioned how horrible it is for the
participants to take medications daily at so young age leading to
treatment fatigue. The participants often ask their caregivers
about why their friends don’t need medication while they do.
This puts the caregivers in very difficult situation as to how to
explain & disclose the status to the participants.
4. Monthly hospital visits & missing school/colleges/tuitions
• According to the NACO guidelines, the ART is provided free of
cost for maximum one month period after which the caregivers
& participants need to collect the medicines for next month. This
requires visit to hospital every month without failure. School &
tuition timing often clash with the hospital timing where there is
queue for medicines. Many participants miss their school &
tuitions to keep this monthly appointment & this causes them
distress. They have to give long explanations at school for why
they need a holiday every month.
5. Poverty
• Poor economic conditions make coping more difficult. Many
HIV affected families do not have a stable income, & often
there are no family members who can work to support family.
Most of these families have a much lower standard of living
than households not affected by HIV. Majority of the
participant families belong to the lower socio-economic class.
Lack of proper resources like food, shelter, and money for
transportation to the hospital.
 CONCLUSION
• QUALITATIVE ANALYSIS
1. Stigma And Discrimination
• In depth interview, stigma and discrimination was found to be one
of the factors affecting the psycho-social adjustment among HIV
positive adolescents.
• In present study, HIV positive adolescents facing problem
regarding changing the schools by several respondents, being
unable to concentrate in class, withdrawing from class
participation, involuntary disclosure of their HIV status to peers.
Although the emphasis on adolescent’s well-being tends to focus
on their health status, these findings also suggest that adolescent’s
psychosocial development may be compromised due to stigma and
discrimination.
2. Loss Of Parents
• In depth interviews, loss of parents was found to be important
reason for difficulty in adjusting to the HIV status. In addition to
the trauma of witnessing the sickness and death of one or both
parents and perhaps siblings. they lack the necessary parental
guidance through crucial life-stages of identity formation and
transition into adulthood. They are more likely to suffer damage to
their cognitive and emotional development and be subjected to
exploitation in terms of labor, social exclusion, illiteracy,
malnutrition and illness.
3. Medication Adherence
• About 77.92% of the participants had 100% adherence followed
by 16.88% participants had 96-99% adherence, 2.59% had 91-
95% & 85-90% adherence. In present study, some HIV
adolescents facing few Side-effects, Treatment fatigue and a lack
of community support that’s why they may stop taking their HIV
medications regularly.
4. Monthly Hospital Visit And Missing School/Tuition
• In present study, when HIV adolescents go for taking medicine
on monthly visit at ART centre, there are long queue of HIV
positive patients therefore school or tuition timings often clash
with the hospital timings. Therefore many participants miss their
school and tuitions to keep this monthly appointment and this
causes them distress. This may affect the adherence among these
adolescents as some may miss monthly hospital visit due to
exam.
5. Poverty
• The present study reported that 16.80% of the participants have
dropped out of school. According to In-depth interviews of
caregivers, important reason for school drop-out was poverty.
HIV adolescents facing problem about not having sufficient funds
for nutritious food as well as transport for medical checkups and
medication and also for school or college education.
 RECOMMENDATIONS

• Institutional
• The present study setting caters to all HIV related services
including ART, ICTC, and STI & PPTCT on the same floor of
the building. The HIV care model based on the current study
setting can be adapted by other institutions, so that transition can
be easier for the adolescents from pediatric to adult care.
• school going participants facing problem regarding visiting
hospital during exams in the current study, so provisions for
adjusting date of the monthly appointment for such adolescents
should be made available.
• Involvement of NJM (Network of Jamnagar positive people) &
other NGOs to assist in issues faced by these families & provide
educational scholarship to decrease the school dropout amongst
these adolescents.
• Community
• Stigma and Discrimination plays a pivotal role in the psychological
health of these adolescents according to the present study finding.
Efforts should be made to end stigma & discrimination among peers &
school staff by generalized awareness regarding HIV. Teachers can be
trained in first –aid services to manage if any positive student gets
injured & bleeds. There should be a formation of self-help groups -
“adolescents club” for positive prevention program in study area.
• Individual & family level
• Fixed day of each week can be dedicated for specialized counseling at
ART Centre of study hospital for HIV positive adolescents to address
their special challenges. Empower the adolescents by improving their
life skill management by proper counseling. To address “treatment
fatigue”, motivational and life skills lectures by healthy HIV positive
individual who is also on treatment for many years to HIV positive
adolescents on ART that can motivate or boost up them for the
adherence to treatment and regular follow up visit.
THANK YOU