Disclosure of HIV status between parents and children in Uganda in the context of greater access to treatment

Kyaddondo, David; Wanyenze, Rhoda K.; Kinsman, John; Hardon, Anita

doi:10.1080/02664763.2012.755323

Cited by 43 publications

(51 citation statements)

References 12 publications

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“…Kinship and family networks become even more important during sickness (Xu et al, 2010;Kyaddondo et al, 2013). This study concurred in that most of the children lived with relatives.…”

Section: The Kinship Obligation and Idealsupporting

confidence: 79%

Communication in the Context of Family Caregiving: An Exploratory Study of Ugandan Children on Antiretroviral Therapy

et al. 2015

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SummaryIt is important to consider the complexities of family dynamics when deciding when and how to communicate with HIV-infected children about their illness and treatment. Previous research has focused on providers’ and caregivers’ perspectives on whether, when and how to disclose HIV/AIDS diagnosis and treatment to HIV-infected children. From the perspective of HIV-infected children, communication does not mean just giving information about illness and treatment, but also encompasses emotional and material care. This paper places communication within the broader framework of caregiving in family situations. This exploratory study was conducted in Jinja district, Uganda, between November 2011 and December 2012. Through participant observation and in-depth interviews, communication by, and with, HIV-infected children in the context of family situations was explored from the perspectives of 29 HIV-infected children aged 8–17 years on antiretroviral therapy (ART) using content thematic analysis. Children’s communication with caregivers about their illness and treatment varied depending on whom they were living with and the nature of caregiving. Although a mother’s care was considered best, children described others who cared ‘like a mother’. For some, caregiving was distributed among several relatives and non-relatives, while others felt they had hardly anyone to care for them. Caregiving from the children’s perspective involved emotional support, expressed verbally and explicitly in messages of concern, encouragement conveyed in reminders to take medicines, attention when sick and confidential conversations about the challenges of having HIV and taking ART. Caregiving was also communicated implicitly in acts of provision of food/drinks to take with medicines, counting pills to confirm they had taken the medicines and accompanying children to treatment centres. Children’s communication about their health and medicines and the care they received was to a large extent shaped by the nature of their relatedness to their caregivers, the extent to which caregiving was dispersed among several people and who else in the household was infected with HIV and on medication.

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“…Kinship and family networks become even more important during sickness (Xu et al, 2010;Kyaddondo et al, 2013). This study concurred in that most of the children lived with relatives.…”

Section: The Kinship Obligation and Idealsupporting

confidence: 79%

Communication in the Context of Family Caregiving: An Exploratory Study of Ugandan Children on Antiretroviral Therapy

et al. 2015

Self Cite

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“…They felt panicked and condemned over the course of time. Other studies also indicate that biological parents experience high levels of guilt when their child is found to be HIV positive (Bennetts et al, 1999;Kyaddondo et al, 2013). One unique condition of being a biological parent to child with HIV, is that the most common HIV transmission to the child is through mother (FHAPCO, 2007;WHO, 2013).…”

Section: Discussionmentioning

confidence: 99%

“…Abebe & Teferra, 2012;Kyaddondo et al, 2013;Mengistu, 2013). Other researchers have emphasized that family caregivers should be empowered through detailed and continuous discussions to reveal the child's status and treatment in order to avoid confusion prior to a child's treatment initiation (Abebe & Teferra, 2012;Kyaddondo et al, 2013;Mumburi et al, 2014).…”

Section: Discussionmentioning

confidence: 99%

Surviving Overwhelming Challenges: Family Caregivers’ Lived Experience of Caring for a Child Diagnosed with HIV and Enrolled in Antiretroviral Treatment in Ethiopia

Biru

Lundqvist

Molla

et al. 2015

Issues in Comprehensive Pediatric Nursing

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“…The studies showed that parents waited until their children become mature enough to understand an explanation of their HIV diagnosis 32,33 , and that disclosure of the diagnosis should happen when parents realize that children are able to understand and cope with the diagnosis of parental HIV…”

Section: Resultsmentioning

confidence: 99%

“…This research identified the following scientific evidence of factors that influence the decision to disclose parents' HIV diagnosis to children: cognitive ability and maturity of the child; strengthening of family ties; informing children about the disease; parents' illness or death; the possibility of discovery by third parties; stigma and prejudice; negative reactions by children; the way of speaking about the disease to the child; and fear of losing parental power [22][23][24][25][26][27][28][29][30][31][32][33][34][35] (Table 1, appendix).…”

Section: Resultsmentioning

confidence: 99%

Revelação do diagnóstico de HIV dos pais

Zanon¹,

Almeida

Brum

et al. 2016

Rev. Bioét.

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The aim was to assess scientific evidence available in the literature about the factors that influence the decision to disclose the parents' HIV diagnosis to their children. The type study is integrative review in the Medline and Lilacs databases, using the words [HIV or aids] and [criança or adolescente] and [revelação]. 14 articles were selected. Factors influencing the decision to disclose the diagnosis were: the cognitive ability and maturity of the child, the strengthening of family ties, the information provided to the child about the disease, parental illness and death, the discovery by third parties, stigma and prejudice, negative reactions from the children, the way to talk about the disease with the child, and the fear of losing parental power. Therefore, a process of preparation for disclosure of the diagnosis, shared among family members who take care of the child and health professionals who maintain ties with the family, was identified. Keywords: HIV. Acquired immunodeficiency syndrome. Child health. Adolescent health. Truth disclosure. Family. Resumo Revelação do diagnóstico de HIV dos paisEste artigo tem o propósito de avaliar evidências científicas, disponíveis na literatura, acerca dos fatores que interferem na decisão de revelar o diagnóstico de HIV dos pais para os filhos. Trata-se de revisão integrativa, desenvolvida nas bases de dados Medline e Lilacs, utilizando os termos [HIV or aids] and [criança or adolescente] and [revelação]. Selecionaram-se 14 artigos. Os fatores que interferem na decisão de revelar o diagnóstico foram: capacidade cognitiva e maturidade da criança; fortalecimento dos laços familiares; informações para a criança acerca da doença; adoecimento e morte dos pais; descoberta por terceiros; estigma e preconceito; reações negativas da criança; modo de falar da doença com a criança; e medo de perder o poder parental. Portanto, indica-se preparo para revelação do diagnóstico, de modo compartilhado entre os familiares que cuidam da criança e os profissionais de saúde que mantêm vínculo com essa família. Palavras-chave: HIV. Síndrome da imunodeficiência adquirida. Saúde da criança. Saúde do adolescente. Revelação da verdade. Família. Resumen Revelación del diagnóstico de VIH de los padresEl objetivo de este texto fue evaluar la evidencia científica disponible en la literatura sobre los factores que influyen en la decisión de revelar el diagnóstico de VHI de los padres a los hijos. El tipo de estudio es una revisión integral en las bases de datos Medline y Lilacs, utilizando las palabras [HIV or aids] and [criança or adolescente] and [revelação]. Se seleccionaron 14 artículos. Los factores que influyen en la decisión de revelar el diagnóstico fueron: la capacidad cognitiva y la madurez del niño; el fortalecimiento de los lazos familiares; informaciones para el niño acerca de la enfermedad; enfermedad y muerte de los padres; descubrimiento por parte de terceros; estigma y prejuicio; reacciones negativas de los niños; modo de hablar sobre la enfermedad con los niños; y, ...

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Disclosure of HIV status between parents and children in Uganda in the context of greater access to treatment

Cited by 43 publications

References 12 publications

Communication in the Context of Family Caregiving: An Exploratory Study of Ugandan Children on Antiretroviral Therapy

Communication in the Context of Family Caregiving: An Exploratory Study of Ugandan Children on Antiretroviral Therapy

Surviving Overwhelming Challenges: Family Caregivers’ Lived Experience of Caring for a Child Diagnosed with HIV and Enrolled in Antiretroviral Treatment in Ethiopia

Revelação do diagnóstico de HIV dos pais

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