HIV-positive parents carry the burden of having to
disclose their own status to their families, and the even greater
challenge of having to inform their seropositive children of their
status. Beyond conveying this information, they must also explain in an
age-appropriate manner that HIV is a chronic illness that must be
managed with a daily regimen of medicines they must take for the rest of
their lives. An additional difficulty is that parents need to be able to
talk openly about sex, a topic that is taboo in Indian families. They
must learn to talk about how the virus is transmitted, answer potential
questions about how they became infected, and talk to their adolescent
children about how to protect their future sexual partners.
The Committed Communities Development Trust (CCDT), a
non-government organization (NGO) has been working with marginalized
populations in Mumbai since 1990. The organization’s mission is to
combat hunger, disease, and discrimination through community action with
a core focus on children. CCDT’s home-based care (HBC) program works
with HIV-infected and affected families through three Mumbai-based
offices offering physical, medical, nutritional, emotional,
psychosocial, and palliative services in the home environment. The HBC
program provides care and support to more than 600 families and over
1000 children every year with the goal of assisting them to return to
good health and economic self-sufficiency . Social workers and other
staff support families and children throughout the disclosure process,
which can take several years as children absorb the information about a
parent’s and/or their own HIV status and learn to assimilate it. CCDT’s
disclosure policy and process provide a practical example for other NGOs
assisting HIV-positive parents to talk to their children about their own
and/or the child’s status.
Disclosure can be separated into three categories: no
disclosure, partial, and full. No Disclosure is when one is told
nothing about HIV or any other illness. Partial Disclosure
involves giving some but not full information about the illness. The
person may be educated about the importance of taking medicine in order
to keep their illness at bay and even learn how an illness can be
transmitted without learning that they are infected with HIV. Full
disclosure is when one is told the name of their illness,
disease-related information (process and transmission), how they became
infected and what they must do to manage the virus and avoid
transmitting it to others .
WHO Disclosure Guidelines
World Health Organization (WHO) policy emphasizes
that systematic disclosure is a critical part of HIV treatment and
support . WHO disclosure guidelines encourage pediatric disclosure,
highlighting the importance of dispelling parents’ or caregivers’ fears
about negative outcomes of telling children the truth about their status
or that of a parent. According to the guidelines, disclosure to children
about their own HIV status is necessary when there is a chance of health
benefit with minimum psychological and emotional harm. Disclosure to
children of their parents’ or caregivers’ HIV status is necessary when
there is a possible health benefit to both HIV-infected and/or affected
children and no further harm to the caregiver’s health status. Overall,
the guidelines suggest that disclosure should be gradual,
age-appropriate, and empathetic . The WHO guidelines are not context-
specific and do not differentiate based on age, maturity and
psychosocial development; however, they provide a useful foundation that
service providers can use to develop detailed, culturally appropriate
Challenges and Strategies
Disclosure has been studied in a number of contexts
and results show lack of consensus among health workers and affected
families on when, how and under what circumstances disclosure should be
carried out. Overall, research on family and pediatric disclosure in
resource-limited settings is heavily focused on sub-Saharan Africa
[4-9]. Forty semi-structured interviews from healthcare providers in
Cape Town, South Africa reported that children should be notified about
the basics of the illness at the age of 6 years, with more specific
discussions regarding HIV at age of 10 years. The data further indicated
a need for interventions to assist healthcare providers and caregivers
in effectively discussing the illness with families . A study from
South Africa, which gathered data through focus group discussions
reported the most frequently cited reasons for not talking about the
illness was: fear of stigma, discrimination, and death; the influence of
television and media; not knowing how to talk to children about such a
sensitive topic; and social isolation. In most cases, parents described
waiting to talk about the illness out of concern that it would frighten
their children .
Published research specific to Indian context is
scant. We could retrieve only two journal articles and one evaluation
report [12-14]. Many children in India find out about their HIV status
indirectly as a result of their frequent doctor visits, intensive
medicine regimens, and overhearing caregivers doctors’ conversations
. A study conducted in Northern India assessing the patterns of HIV
disclosure in 145 children over the age of five found that children were
told about the illness between the ages of eight and ten years .
Another study in Delhi with fifty caregivers indicated that 14% of
children were aware of their infection, and only 6% were given factual
information about the illness . Barriers to disclosure in the
studies included stigma and caregiver’s lack of knowledge, communication
strategies and emotional preparation [12,13].
A 2014 mixed-methods evaluation of pediatric
disclosure practices by four NGOs provides the most in-depth, relevant
data . All four NGOs demonstrated expertise in the field with
experienced staff trained to support family and pediatric disclosure.
Each NGO employed self-designed interventions with emphasis on adherence
to antiretroviral therapy (ART), nutrition, hygiene, and self-care. The
study reported CCDT staff discussing HIV status with children in their
residential care program with an emphasis on finding a balance between
maturity level and growing curiosity. In particular, a child’s maturity
level guided provision of information on modes of transmission, CD4
count, and the importance of ART adherence. The evaluation findings
suggest that all four NGOs played a critical role in encouraging
caregivers and parents to talk about the illness with children, but
greater collaboration is required with ART centers and national
CCDT’s Disclosure Process
CCDT has been implementing its family and pediatric
disclosure protocol as part of their home-based care program in Mumbai,
India. Over the last 20 years, CCDT has designed a systematic and
culturally sensitive process that guides families through the disclosure
process over time. Full disclosure is promoted with all families in the
HBC programme and particularly emphasized in the following situations:
• When a seropositive adult client is not
disclosing status to his/her partner but is having sexual
• In a child-headed family where a child is
• When a seropositive single parent has very poor
health and seropositive children;
• When a child is taking care of an HIV-infected
parent whose health is poor.
In the beginning of the process, parents or
caregivers meet with a social worker and counselor who provide
psychosocial support and initiate a conversation about the importance of
informing children about the illness . Children are included in the
conversation once the parent is ready to share information about their
HIV status or the child’s (Box 1). CCDT also organizes a
three-day residential camp outside of Mumbai to provide additional
counseling support to parents and introduce the illness to children in
an informal, supportive group setting. The camp counselors conduct
various games and role-plays to discuss basics of HIV, living with the
virus, coping mechanisms and the importance of disclosure [1,14].
Key Points in HIV Disclosure Process Between Parent and Child
• Conversation initiated between ages 11 and
• Age-appropriate information given to child
• Gradual process guided by child’s maturity
• Conducted with clear guidelines set with
assistance of a counselor
• Timing determined by parent’s readiness to
broach the topic
• Ongoing follow-up provided by counselor to
assist with child’s questions and acceptance process
Results From the Disclosure Evaluation
A small process evaluation was undertaken by CCDT in
2013 with 33 families, who had completed the disclosure process at least
two years prior. Within each family, one parent and one child were
interviewed by an external researcher (the corresponding author) about
their insights on the impact of disclosure on family relationships and
children’s understanding of their own or their parent’s illness. The
interview questions focused on five broad themes: (i) medicine
and illness; (ii) shame, blame, and judgment; (iii)
stigma, fear and discrimination; (iv) talking about HIV status;
and (v) the child’s daily interactions with family.
The study findings suggested positive progress from
the families’ initial enrollment into the HBC programme. Following
disclosure, most of the parents reported feeling less fearful of death
and over half of the parents indicated feeling less stressed about
shame, blame and judgment. Both parents and children communicated
positive outcomes such as healthier diet, improved family relationships
and taking better care of family members. As one mother explained her
motivation for disclosing her HIV status to her children: "Being a
single mother, I get blamed a lot about my positive status. I fear for
my children. People don’t have problems spreading rumors. I wanted to
disclose my status to my children so they know not to blame their
mother." An adolescent girl reported feeling greater empathy for her
father once she learned of his illness: "I was always angry at my
father for being sick and strict with me for going out late at night. I
never understood why he was tired all the time. When I attended the
residential camp, I understood what he was dealing with."
Parents and children suggested eleven to fifteen
years to be the appropriate age frame to inform children about the
parent and child’s HIV status. The children demonstrated their
understanding of HIV by explaining modes of transmission and importance
of medications. Many reported understanding their parents’ initial
hesitation to talk about their own illness or the child’s. Overall,
children reported appreciating the opportunity to learn and talk openly
about their or their parent’s illness, and did not blame the parent.
Disclosure Process and Follow-Up
Getting families to talk about HIV continues to be a
challenge for CCDT due to cultural beliefs and stigma. Parents still
struggle to disclose due to the fear of being exposed and isolated from
society. Families also expressed the need for post-disclosure follow-up
to offer children direction on scholarship opportunities, college
admissions, marriage and career guidance. Children asked for more
opportunities with the organization to volunteer in community events and
HIV/AIDS-related campaigns. They also requested assistance with job
applications and life-skills seminars on self-reliance and leadership
Lessons From CCDT’s Experiences
CCDT’s emphasis on the importance of parent-child
disclosure seems to be a positive step for the families participating in
the home-based care program, enabling them to discuss the illness freely
and to work together on improving their health, treatment adherence, and
relationships. The organization’s twenty-plus years of experience
supporting families affected by HIV shows that disclosure is not a
snapshot event; rather, it is a long-term process involving ongoing
follow-up and guidance that can influence the present and future
emotional wellbeing and self-care of both parents and children. However,
there is a lack of guidance on timing and impact of disclosure. On a
national level, there is a greater need for stronger collaboration
between health care providers and NGOs to learn from effective
implementation of programs . Through culturally appropriate
guidelines, stronger protocols, and collaboration at a national level,
effective disclosure protocols are certainly achievable.
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