Introduction
HIV treatment and
disclosure guidelines emphasize the importance of communicating diagnosis and
treatment to infected children in ways that are appropriate to children’s
developmental stage and age. Minimal attention, however, has been given to
communication challenges confronted by HIV-infected children and their
caregivers. This study examined the tensions between children and their
caregivers arising from differing perspectives regarding when and what to
communicate about antiretroviral therapy (ART).
Methods
This qualitative study
was conducted between November 2011 and December 2012 and involved 29
HIV-infected children aged 8–17 years on ART and their caregivers. Data were
collected through observations and in-depth interviews, which took place in
homes, treatment centres and post-test clubs. Children and caregivers were
sampled from among the 394 HIV-infected children and (their) 393 caregivers who
participated in the cross-sectional survey that preceded the qualitative study.
ATLAS.ti. Version 7 was used in the management of the qualitative data and in
the coding of the emerging themes. The data were then analyzed using content
thematic analysis.
Results
While the children felt
that they were mature enough to know what they were suffering and what the medications
were for, the caregivers wanted to delay discussions relating to the children’s
HIV diagnosis and medication until they felt that the children were mature
enough to deal with the information and keep it a secret and this caused a lot
of tension. The children employed different tactics including refusing to take
the medicines, to find out what they were suffering from and what the
medications were for. Children also had their own ideas about when, where and
with whom to discuss their HIV condition, ideas that did not necessarily
coincide with those of their caregivers, resulting in tensions.
Conclusions
Guidelines should take
into consideration differing perceptions of maturity when recommending ages at
which caregivers should communicate with their children about diagnosis and
ART. Health care providers should also encourage caregivers to recognize and
respect children’s efforts to learn about and manage their condition.
Children’s questions and expressions of feelings should be treated as openings
for communication on these issues.
Summary of the topics in the in-depth interview guide.
| TOPICS | SUB-TOPICS |
|---|
| Experiences considered most important in the life of the child | Schooling/lack of schooling experiences; a typical week of schooling; vacation/holiday-what they do, who they visit; involvement in social events e.g. sports, drama, post-test clubs, relations with peers; whom they confide in when they have good or bad news. |
| Socio-demographic information | Age, birth/parents, education status, residence i.e. who the child lives with/family relations, relationship to caregiver, employment of caregiver, living conditions, number of siblings. |
| Health & medicine experiences | Why and how often they go to the treatment centres; who escorts them; what takes place when they go; what medicines they are given and how often they take them; how long they have been taking the medicines; where they keep the medicines; who helps them to take the medicine; who they talk to about the medicine at home, school, neighbourhood; what they talk about; who else at home takes similar medicines; what they understand by the need to be on lifelong/daily medication |
| Learning about status/experiences of disclosure | Reasons they had been given for taking daily medicines; who told them; their experiences and reactions when they learnt reasons for taking daily medicines; how they came to know the illness/health condition for which they took daily medicines; who told them; what exactly they were told; how they were told; age at which they were told; their experiences/reactions when they were told about their illness; what they understand by having illness. |
| Communication about illness and treatment in different social spaces | People who knew about their illness/health and medicines at home, school, in the neighborhood, and how they came to know; people they had told about their health and medicines; reasons for telling such people; people’s reactions when they were told; who they normally communicated with about their illness and treatment and where; who they think deserved to know about their illness and why; what they liked/disliked to hear about their health and medicines; questions/challenges of being on daily medicines; whom they talk to about these challenges; how they could be supported to live on daily medicines. |
David Joseph Diemert, Editor
1Child
Health and Development Centre, College of Health Sciences, Makerere University,
Kampala, Uganda
2Department
of Anthropology, University of Copenhagen, Copenhagen, Denmark
The George Washington University School of
Medicine and Health Sciences, UNITED STATES
#Contributed equally.
Competing
Interests: The authors have declared
that no competing interests exist.
Conceived and designed the
experiments: PK SRW DK ARK. Performed the experiments: PK. Analyzed the data:
PK. Contributed reagents/materials/analysis tools: PK SRW DK ARK. Wrote the
paper: PK SRW DK ARK. Participated in analysis and interpretation of data: SRW
DK ARK. Drafted the manuscript: PK. Reviewed the manuscript: SRW DK ARK. Read
and approved the final manuscript: PK SRW DK ARK.
