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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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. |
doi_str_mv | 10.1371/journal.pone.0147119 |
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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.</description><identifier>ISSN: 1932-6203</identifier><identifier>EISSN: 1932-6203</identifier><identifier>DOI: 10.1371/journal.pone.0147119</identifier><identifier>PMID: 26784904</identifier><language>eng</language><publisher>United States: Public Library of Science</publisher><subject>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</subject><ispartof>PloS one, 2016-01, Vol.11 (1), p.e0147119-e0147119</ispartof><rights>COPYRIGHT 2016 Public Library of Science</rights><rights>2016 Kajubi et al. This is an open access article distributed under the terms of the Creative Commons Attribution License: http://creativecommons.org/licenses/by/4.0/ (the “License”), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><rights>2016 Kajubi et al 2016 Kajubi et al</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c692t-b545f401614e1bbc851b0ccd4b27bcb19279bfc6c1a9a0a32adab17a9bac170c3</citedby><cites>FETCH-LOGICAL-c692t-b545f401614e1bbc851b0ccd4b27bcb19279bfc6c1a9a0a32adab17a9bac170c3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC4718696/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC4718696/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,723,776,780,860,881,2096,2915,23845,27901,27902,53766,53768,79342,79343</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/26784904$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Kajubi, Phoebe</creatorcontrib><creatorcontrib>Whyte, Susan Reynolds</creatorcontrib><creatorcontrib>Kyaddondo, David</creatorcontrib><creatorcontrib>Katahoire, Anne Ruhweza</creatorcontrib><title>Tensions in Communication between Children on Antiretroviral Therapy and Their Caregivers: A Qualitative Study in Jinja District, Uganda</title><title>PloS one</title><addtitle>PLoS One</addtitle><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.</description><subject>Acquired immune deficiency syndrome</subject><subject>Adolescent</subject><subject>AIDS</subject><subject>Antiretroviral agents</subject><subject>Antiretroviral drugs</subject><subject>Antiretroviral therapy</subject><subject>Antiretroviral Therapy, Highly Active - psychology</subject><subject>Caregivers</subject><subject>Caregivers - psychology</subject><subject>Child</subject><subject>Children</subject><subject>Communication</subject><subject>Cross-Sectional Studies</subject><subject>Data processing</subject><subject>Diagnosis</subject><subject>Drug therapy</subject><subject>Drugs</subject><subject>Female</subject><subject>Guidelines</subject><subject>Health care</subject><subject>Highly active antiretroviral therapy</subject><subject>HIV</subject><subject>HIV - pathogenicity</subject><subject>HIV Infections - drug therapy</subject><subject>HIV Infections - psychology</subject><subject>HIV Infections - virology</subject><subject>HIV patients</subject><subject>Human immunodeficiency virus</subject><subject>Humans</subject><subject>Male</subject><subject>Medical communication</subject><subject>Medical diagnosis</subject><subject>Medical research</subject><subject>Methods</subject><subject>Pediatric HIV infections</subject><subject>Qualitative analysis</subject><subject>Qualitative Research</subject><subject>Social aspects</subject><subject>Tactics</subject><subject>Teenagers</subject><subject>Therapy</subject><subject>Uganda</subject><subject>Whyte, David</subject><issn>1932-6203</issn><issn>1932-6203</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2016</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>BENPR</sourceid><sourceid>DOA</sourceid><recordid>eNqNk9uO0zAQhiMEYpeFN0AQaSUEEi124hzMBVJVTkUrrWC73Fpjx2ldJXaxnULfgMfGodlVg_YC5SKj39_8Y489UfQUoylOC_xmYzqroZlujZZThEmBMb0XnWKaJpM8Qen9o_gkeuTcBqEsLfP8YXSS5EVJKCKn0e-l1E4Z7WKl47lp204rAT4oMZf-p5RBXaumsiEI2kx7ZaW3ZqcsNPFyLS1s9zHoqo-Vjedg5UrtpHVv41n8tYNG-WC3k_GV76p9X-WL0huI3yvnrRL-dXy9CunwOHpQQ-Pkk-F_Fl1__LCcf55cXH5azGcXE5HTxE94RrKaIJxjIjHnoswwR0JUhCcFFxzTpKC8FrnAQAFBmkAFHBdAOQhcIJGeRc8PvtvGODY00TFcFDjJihSngVgciMrAhm2tasHumQHF_grGrhhYr0QjGS8kqTgALjNBKOFlVRdQU5SHnSCJSPB6N1TreCsrIbUPfRuZjle0WrOV2bFwnWVO82DwcjCw5kcnnWetckI2DWhpun7fOSpLEtoR0PN_0LtPN1ArCAdQujahruhN2YwQlNEE4yxQ0zuo8FWyVSK8uFoFfZTwapQQGC9_-RV0zrHF1bf_Zy-_j9kXR-xaQuPXzjRd_0LdGCQHUFjjnJX1bZMxYv3A3HSD9QPDhoEJac-OL-g26WZC0j_UmBKv</recordid><startdate>20160119</startdate><enddate>20160119</enddate><creator>Kajubi, Phoebe</creator><creator>Whyte, Susan Reynolds</creator><creator>Kyaddondo, David</creator><creator>Katahoire, Anne Ruhweza</creator><general>Public Library of Science</general><general>Public Library of Science (PLoS)</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>IOV</scope><scope>ISR</scope><scope>3V.</scope><scope>7QG</scope><scope>7QL</scope><scope>7QO</scope><scope>7RV</scope><scope>7SN</scope><scope>7SS</scope><scope>7T5</scope><scope>7TG</scope><scope>7TM</scope><scope>7U9</scope><scope>7X2</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>8AO</scope><scope>8C1</scope><scope>8FD</scope><scope>8FE</scope><scope>8FG</scope><scope>8FH</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABJCF</scope><scope>ABUWG</scope><scope>AEUYN</scope><scope>AFKRA</scope><scope>ARAPS</scope><scope>ATCPS</scope><scope>AZQEC</scope><scope>BBNVY</scope><scope>BENPR</scope><scope>BGLVJ</scope><scope>BHPHI</scope><scope>C1K</scope><scope>CCPQU</scope><scope>D1I</scope><scope>DWQXO</scope><scope>FR3</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>H94</scope><scope>HCIFZ</scope><scope>K9.</scope><scope>KB.</scope><scope>KB0</scope><scope>KL.</scope><scope>L6V</scope><scope>LK8</scope><scope>M0K</scope><scope>M0S</scope><scope>M1P</scope><scope>M7N</scope><scope>M7P</scope><scope>M7S</scope><scope>NAPCQ</scope><scope>P5Z</scope><scope>P62</scope><scope>P64</scope><scope>PATMY</scope><scope>PDBOC</scope><scope>PIMPY</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PTHSS</scope><scope>PYCSY</scope><scope>RC3</scope><scope>7X8</scope><scope>5PM</scope><scope>DOA</scope></search><sort><creationdate>20160119</creationdate><title>Tensions in Communication between Children on Antiretroviral Therapy and Their Caregivers: A Qualitative Study in Jinja District, Uganda</title><author>Kajubi, Phoebe ; Whyte, Susan Reynolds ; Kyaddondo, David ; Katahoire, Anne Ruhweza</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c692t-b545f401614e1bbc851b0ccd4b27bcb19279bfc6c1a9a0a32adab17a9bac170c3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2016</creationdate><topic>Acquired immune deficiency syndrome</topic><topic>Adolescent</topic><topic>AIDS</topic><topic>Antiretroviral agents</topic><topic>Antiretroviral drugs</topic><topic>Antiretroviral therapy</topic><topic>Antiretroviral Therapy, Highly Active - psychology</topic><topic>Caregivers</topic><topic>Caregivers - psychology</topic><topic>Child</topic><topic>Children</topic><topic>Communication</topic><topic>Cross-Sectional Studies</topic><topic>Data processing</topic><topic>Diagnosis</topic><topic>Drug therapy</topic><topic>Drugs</topic><topic>Female</topic><topic>Guidelines</topic><topic>Health care</topic><topic>Highly active antiretroviral therapy</topic><topic>HIV</topic><topic>HIV - pathogenicity</topic><topic>HIV Infections - drug therapy</topic><topic>HIV Infections - psychology</topic><topic>HIV Infections - virology</topic><topic>HIV patients</topic><topic>Human immunodeficiency virus</topic><topic>Humans</topic><topic>Male</topic><topic>Medical communication</topic><topic>Medical diagnosis</topic><topic>Medical research</topic><topic>Methods</topic><topic>Pediatric HIV infections</topic><topic>Qualitative analysis</topic><topic>Qualitative Research</topic><topic>Social aspects</topic><topic>Tactics</topic><topic>Teenagers</topic><topic>Therapy</topic><topic>Uganda</topic><topic>Whyte, David</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Kajubi, Phoebe</creatorcontrib><creatorcontrib>Whyte, Susan Reynolds</creatorcontrib><creatorcontrib>Kyaddondo, David</creatorcontrib><creatorcontrib>Katahoire, Anne Ruhweza</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Gale In Context: Opposing Viewpoints</collection><collection>Gale In Context: Science</collection><collection>ProQuest Central (Corporate)</collection><collection>Animal Behavior Abstracts</collection><collection>Bacteriology Abstracts (Microbiology B)</collection><collection>Biotechnology Research Abstracts</collection><collection>Nursing & Allied Health Database</collection><collection>Ecology Abstracts</collection><collection>Entomology Abstracts (Full archive)</collection><collection>Immunology Abstracts</collection><collection>Meteorological & Geoastrophysical Abstracts</collection><collection>Nucleic Acids Abstracts</collection><collection>Virology and AIDS Abstracts</collection><collection>Agricultural Science Collection</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>ProQuest Pharma Collection</collection><collection>Public Health Database</collection><collection>Technology Research Database</collection><collection>ProQuest SciTech Collection</collection><collection>ProQuest Technology Collection</collection><collection>ProQuest Natural Science Collection</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>Materials Science & Engineering Collection</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest One Sustainability</collection><collection>ProQuest Central UK/Ireland</collection><collection>Advanced Technologies & Aerospace Collection</collection><collection>Agricultural & Environmental Science Collection</collection><collection>ProQuest Central Essentials</collection><collection>Biological Science Collection</collection><collection>ProQuest Central</collection><collection>Technology Collection</collection><collection>Natural Science Collection</collection><collection>Environmental Sciences and Pollution Management</collection><collection>ProQuest One Community College</collection><collection>ProQuest Materials Science Collection</collection><collection>ProQuest Central Korea</collection><collection>Engineering Research Database</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>AIDS and Cancer Research Abstracts</collection><collection>SciTech Premium Collection</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Materials Science Database</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>Meteorological & Geoastrophysical Abstracts - 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Academic</collection><collection>PubMed Central (Full Participant titles)</collection><collection>DOAJ Directory of Open Access Journals</collection><jtitle>PloS one</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Kajubi, Phoebe</au><au>Whyte, Susan Reynolds</au><au>Kyaddondo, David</au><au>Katahoire, Anne Ruhweza</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Tensions in Communication between Children on Antiretroviral Therapy and Their Caregivers: A Qualitative Study in Jinja District, Uganda</atitle><jtitle>PloS one</jtitle><addtitle>PLoS One</addtitle><date>2016-01-19</date><risdate>2016</risdate><volume>11</volume><issue>1</issue><spage>e0147119</spage><epage>e0147119</epage><pages>e0147119-e0147119</pages><issn>1932-6203</issn><eissn>1932-6203</eissn><abstract>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.</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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