Experiences of South African caregivers disclosing to their children living with HIV: Qualitative investigations

Joyce, Celeste; Ramsammy, Candice; Galvin, Lisa; Leshabane, Given; Liberty, Afaaf; Otwombe, Kennedy; Buckley, Janice; Milovanovic, Minja; Violari, Avy

doi:10.1371/journal.pone.0277202

Cited by 3 publications

(5 citation statements)

References 44 publications

(90 reference statements)

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“…Our findings suggest that the most effective strategy for the child’s wellbeing and health is to respect his or her wishes and find enabling ways to sustain adherence, rather than promoting disclosure against her wishes, which could lead to non-adherence and poor mental health ( 23 , 36 , 39 ). This type of consideration and nuance in deciding who to tell and providing post-disclosure counseling and support proved a critical element of peer navigation services for youth, and aligns with findings from other research in the region around effective disclosure strategies for youth ( 6 , 35 , 40 ).…”

Section: Discussionsupporting

confidence: 69%

“I am still human and worth a life:” a qualitative study of the impacts of a community based, peer-led, treatment support model for young adults living with HIV in Zimbabwe

Zamudio-Haas,

Mahaka,

Chapwanya

et al. 2024

Front. Public Health

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BackgroundA persistent treatment gap remains between children and adults living with HIV. The Zvandiri program, developed by Africaid, is one of the few models of differentiated service delivery for children, adolescents, and youth that has been shown to improve outcomes along the HIV care continuum, employing Community Adolescent Treatment Supporters (CATS) to offer peer counseling and patient navigation. Our qualitative study provides an in-depth analysis of the feelings and experiences Zimbabwean youth had following an HIV diagnosis, and the ways that CATS facilitated linkage and retention in care.MethodsWe conducted in-depth interviews in Shona with adolescents and young adults who were recently diagnosed with HIV in Zimbabwe. Interviews were audio-recorded, transcribed, and then translated to English. Interviews were coded in Dedoose using a structured a priori codebook. We wrote semi-structured summary memos for each interview. We co-conducted thematic analysis, guided by interpretive phenomenology with a team of Zimbabwean and American experienced qualitative researchers and community partners. We co-developed memos to elaborate and understand key themes across interviews.ResultsMost of our interview participants recounted an immediate sense of loss upon testing HIV positive and a fear that “there was no hope for the future.” CATS played a pivotal role for youth, providing emotional, educational, and logistical support to facilitate treatment initiation, adherence, and persistence in care. The CATS program supported youth through multiple approaches: group sessions, individual meetings, and via text or phone. While CATS offered counseling and comfort to participants, they emphasized the long-term importance of identifying at least one other person in participants’ lives who could know their status and support them around HIV.ConclusionOur findings delineate some of the key concerns that face youth after receiving an HIV diagnosis and the ways that a community-based adherence peer navigation program supported participants to navigate both their feelings and the health care system. Results can inform practice at community-based agencies that are implementing or considering peer youth navigation programs and garner support for policy to fund interventions for youth.

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Section: Discussionsupporting

confidence: 69%

“I am still human and worth a life:” a qualitative study of the impacts of a community based, peer-led, treatment support model for young adults living with HIV in Zimbabwe

Zamudio-Haas,

Mahaka,

Chapwanya

et al. 2024

Front. Public Health

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“…Cuidadores de crianças soropositivas evitam revelar o diagnóstico de infecção pelo HIV, buscando protegê-las das consequências emocionais e sociais de serem portadores de uma enfermidade grave, crônica e estigmatizante (Programa Estadual DST/Aids-SP, 2008) e, portanto, muitas vezes necessitam de ajuda profissional para conseguirem revelar o diagnóstico a estas crianças (Joyce et al, 2022;Qur'aniati et al, 2022), de forma a favorecer a adesão ao tratamento e a compreensão de sua realidade, porém sem gerar traumas e revoltas. A revelação do diagnóstico deve ser feita, o mais breve possível, em conjunto com os cuidadores, em um processo contínuo, comunicando às crianças que vivem com o HIV informações claras e precisas (Ministério da Saúde, 2009).…”

Section: Discussionunclassified

“…(Bubadué et al, 2022;Castellani & Moretto, 2016;Galano et al, 2014;Programa Estadual DST/Aids-SP, 2008;Silveira, 2008). Dentre estes, a revelação do diagnóstico, ou seja, contar para o indivíduo que ele foi infectado pelo HIV, se destaca por ser uma questão extremamente complexa, que tem se tornado cada vez mais relevante na prática clínica (Negrini, 2017;Joyce et al, 2022;Silveira, 2008) e especialmente delicada quando o sujeito é uma criança.…”

Section: Introductionunclassified

“…O esclarecimento diagnóstico às crianças soropositivas que adquiriram o vírus por transmissão vertical (quando a infecção é transmitida da mãe biológica para o bebê durante o período de gestação, parto ou aleitamento) é um dos aspectos que causa maiores dificuldades psicológicas de enfrentamento para as famílias. Os principais motivos para os pais e cuidadores adiarem esta revelação e manterem segredo sobre o diagnóstico são: o medo da criança não conseguir guardar segredo sobre sua condição de saúde e vivenciar situações de discriminação, preconceito e isolamento social; a exposição da história familiar e da forma de contágio pelo vírus; o receio de que a criança desenvolva sentimentos de culpabilização, raiva e revolta em relação aos pais (Barfield & Kane, 2008;Bhattacharya et al, 2011;Castellani & Moretto, 2016;Joyce et al, 2022;Kouyoumdjian et al, 2005;Marques et al, 2006;Ministério da Saúde, 2018;Negrini, 2017, Programa Estadual DST/Aids-SP, 2008Qur'aniati et al, 2022;Silveira, 2008). O estigma que leva a situações de preconceito é decorrente da associação que ainda se faz na sociedade entre comportamentos de risco e HIV/aids, culpabilizando o indivíduo pela infecção, inferindo uso de drogas e promiscuidade (Maman et al, 2009;Simbayi et al, 2007).…”

Section: Introductionunclassified

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Processo grupal para revelação do diagnóstico a crianças que vivem com HIV/aids: relato de experiência

Sposito

Holanda²

2023

RSD

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A atual realidade da Síndrome da Imunodeficiência Adquirida (aids) enquanto doença crônica trouxe alguns desafios para os cuidadores e profissionais de saúde. Dentre estes, a revelação do diagnóstico, ou seja, contar para o indivíduo que ele foi infectado pelo vírus da imunodeficiência humana (HIV), se destaca por ser uma questão extremamente complexa e especialmente delicada com o sujeito é uma criança. Apesar da relutância familiar para contar à criança que ela possui o HIV, a revelação diagnóstica traz benefícios para o paciente, para os cuidadores e para os profissionais de saúde. Este estudo é um relato de experiência do processo de revelação do diagnóstico de HIV/aids para as crianças soropositivas acompanhadas pela equipe multidisciplinar da infectologia pediátrica, em um hospital terciário no interior do estado de São Paulo. Trata-se de um acompanhamento em grupos de pacientes e de seus cuidadores, coordenados pela terapeuta ocupacional e pela psicóloga da equipe. O processo de revelação do diagnóstico era organizado em etapas: avaliação inicial; atividades grupais para esclarecimentos acerca do HIV/aids e sua ação no corpo; revelação do diagnóstico; acompanhamento posterior e reavaliação. Acredita-se que a revelação do diagnóstico é um marco para a construção de uma nova história e identidade. Quando as crianças obtêm informações realistas sobre sua condição de saúde, conseguem entender a importância das medicações, o que contribui para a adesão ao tratamento. O esclarecimento do diagnóstico favorece ainda a adaptação dos pacientes à soropositividade, propiciando que estes desenvolvam habilidades de enfrentamento para lidar com essa condição.

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“…A qualitative exploratory descriptive study carried out in the Limpopo Province, South African caregivers for CLWHIV were not trained in initiating HIV disclosure [39]. Given that, caregivers of orphaned children by HIV/AIDS who lack the ability to disclose believed that healthcare professionals should help them to conduct disclosure process [40]. Despite inadequate support, the ndings of the study conducted by Muditambi et al [39] revealed that caregivers reported that the healthcare practitioner had advised them on how to disclose HIV status to CLWHIV.…”

Section: Context (In What Context Is the Conceptual Framework Perform...mentioning

confidence: 99%

Conceptual Framework for the health and well-being of caregivers of HIV/AIDS orphans in North West Province, South Africa

Molato,

Moloko-Phiri,

Koen

et al. 2024

Preprint

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Background The human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) are an epidemic that continues to increase the burden of care among caregivers of orphaned children. Previous research has shown that providing care in an unsuitable environment has an impact on the health and well-being of caregivers of HIV/AIDS orphans. The research also showed that the North West Province lacks a conceptual framework that addresses the health and well-being of caregivers caring for HIV/AIDS orphans. As a result, this study developed a conceptual framework to improve the health and well-being of caregivers of HIV/AIDS orphans in the north-west province, South Africa. Methods A descriptive and contextual design was used. The practice-orientated theory by Dickoff, James, and Wiedenbach guided the development of the conceptual framework. These six steps include the agent, recipient, context, procedure, dynamics, and terminus. Results The study findings include home visits, health education, support during disclosure, routine monitoring of blood and growth, mobilisation of support systems and resources, and utilisation of government services. Conclusion The conceptual framework offers data that can help OTLs and registered nurses in PHC facilities improve the health and well-being of caregivers of HIV/AIDS orphans by providing high-quality care. The framework guides OTLs and registered nurses in PHC institutions on the procedure to follow to improve and preserve the optimal state of health.

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Experiences of South African caregivers disclosing to their children living with HIV: Qualitative investigations

Cited by 3 publications

References 44 publications

“I am still human and worth a life:” a qualitative study of the impacts of a community based, peer-led, treatment support model for young adults living with HIV in Zimbabwe

“I am still human and worth a life:” a qualitative study of the impacts of a community based, peer-led, treatment support model for young adults living with HIV in Zimbabwe

Processo grupal para revelação do diagnóstico a crianças que vivem com HIV/aids: relato de experiência

Conceptual Framework for the health and well-being of caregivers of HIV/AIDS orphans in North West Province, South Africa

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