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-infecte...

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Veröffentlicht in:PloS one 2016-01, Vol.11 (1), p.e0147119-e0147119
Hauptverfasser: Kajubi, Phoebe, Whyte, Susan Reynolds, Kyaddondo, David, Katahoire, Anne Ruhweza
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description 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.
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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.</abstract><cop>United States</cop><pub>Public Library of Science</pub><pmid>26784904</pmid><doi>10.1371/journal.pone.0147119</doi><oa>free_for_read</oa></addata></record>
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subjects Acquired immune deficiency syndrome
Adolescent
AIDS
Antiretroviral agents
Antiretroviral drugs
Antiretroviral therapy
Antiretroviral Therapy, Highly Active - psychology
Caregivers
Caregivers - psychology
Child
Children
Communication
Cross-Sectional Studies
Data processing
Diagnosis
Drug therapy
Drugs
Female
Guidelines
Health care
Highly active antiretroviral therapy
HIV
HIV - pathogenicity
HIV Infections - drug therapy
HIV Infections - psychology
HIV Infections - virology
HIV patients
Human immunodeficiency virus
Humans
Male
Medical communication
Medical diagnosis
Medical research
Methods
Pediatric HIV infections
Qualitative analysis
Qualitative Research
Social aspects
Tactics
Teenagers
Therapy
Uganda
Whyte, David
title Tensions in Communication between Children on Antiretroviral Therapy and Their Caregivers: A Qualitative Study in Jinja District, Uganda
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