Thursday, February 4, 2016

Tensions in Communication between Children on Antiretroviral Therapy and Their Caregivers: A Qualitative Study in Jinja District, Uganda

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).

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.

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.

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.
Experiences considered most important in the life of the childSchooling/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 informationAge, 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 experiencesWhy 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 disclosureReasons 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 spacesPeople 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.

Full article at:

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.
Published online 2016 Jan 19. doi:  10.1371/journal.pone.0147119

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