Background
Increasingly many perinatally HIV-infected children are surviving through
adolescence and adulthood as a result of improvements in the management of
paediatric HIV infection, particularly the increased use of combination therapy. It
is usually the parents or guardians of these children who are faced with the task of
informing the child living with HIV about his or her positive status. However, many
parents—particularly biological parents —find this disclosure process difficult to
initiate, and this study explored some of the difficulties that these parents encounter.
Objective
This study set out to explore potential factors that challenge parents and guardians
when informing their perinatally HIV-infected child about the child’s HIV status.
Design
This was a qualitative narrative study that employed in-depth interviews with
parents or guardians of children perinatally infected with HIV. A total of 20 parents
and guardians of children who attend the outpatient HIV clinic at the Baylor
College of Medicine-Abbott Fund Children’s Clinical Centre of Excellence (COE)
in Lilongwe, Malawi were interviewed. Of these, 14 were biological parents and six
were guardians.
Results
Guardians and parents expressed uneasiness and apprehension with the disclosure
conversation, whether or not they had already told their child that he or she had HIV.
Participants who had not told their children recounted that they had contemplated
starting the conversation but could not gather enough courage to follow through
with those thoughts. They cited the fear of robbing their child of the happiness
of living without the knowledge of being positive, fear of making their own status
known to more people, and fear of confrontation or creating enmity with their
child as impediments to disclosing their child’s positive HIV status to him or her.
Conclusions
It is apparent that guardians—more particularly biological parents—of children
perinatally infected by HIV find it difficult to inform their children about their
children’s HIV status. From this disempowered position, parents dread the
disclosure of a positive HIV status to a child as a psychosocial process that has
the potential to disturb a family’s previously established equilibrium with threats of
stigmatization, marginalization, and parent-child conflict. This calls for strategies
that could support parents to make disclosure to the child less challenging.