Using Health Provider Insights to Inform Pediatric HIV Disclosure: A Qualitative Study and Practice Framework from Kenya

Beima‐Sofie, Kristin; John‐Stewart, Grace; Shah, Brandi; Wamalwa, Dalton; Maleche‐Obimbo, Elizabeth; Kelley, Maureen

doi:10.1089/apc.2014.0040

Cited by 40 publications

(88 citation statements)

References 44 publications

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“…Delaying disclosure until the child is too old is against the WHO’s recommendation to disclose PHIV+ diagnosis to school-age children,35 and does not follow the national guidelines recommendation that children aged 10 years and above should receive full disclosure 36. Such delay in disclosure poses a risk of an inadvertent disclosure or psychological harm for the child 10. Furthermore, it has the negative implications of losing the mental health benefits of disclosure, gaining cooperation of the child with medication adherence and improving the caregiver–child relationship 12 37.…”

Section: Discussionmentioning

confidence: 99%

“…PHIV+ diagnosis disclosure is further complicated by lack of skill on the caregiver’s side to undertake disclosure. Furthermore, poor access to training and lack of clear guidelines for healthcare workers on PHIV+ diagnosis disclosure might have played a role in delaying disclosure 10. Delay in disclosure has implications both for the clinical outcome as well as transmission of the infection, as children enter the pubertal stage and start romantic relationships and ultimately sexual intercourse 10–13…”

Section: Introductionmentioning

confidence: 99%

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Perinatally acquired HIV-positive status disclosure and associated factors in Dire Dawa and Harar, Eastern Ethiopia: a health facility-based cross-sectional study

2018

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ObjectivesThe aim of this study was to assess the level and factors associated with caregivers’ disclosure of perinatally HIV-infected (PHIV+) children’s seropositive status.DesignWe conducted a cross-sectional study in five public health facilities providing HIV treatment and care in Dire Dawa and Harar, Eastern Ethiopia. The data were collected from 310 caregivers through face-to-face interviews and record reviews. Data analyses were done using STATA V.14.2 and statistical significance was declared at p value <0.05.ResultsThe study revealed that the level of PHIV+ diagnosis disclosure was 49.4% (95% CI 43.8 to 54.9). Mean age at disclosure was 11.2 years. Disclosure level was higher among children who frequently asked about their health status (aOR (adjusted OR) 2.04, 95% CI 1.04 to 4.03) and when caregivers knew other people who had a disclosure experience (aOR 2.49, 95% CI 1.17 to 5.32). Disclosure level was less among children of 12 years or below (aOR 0.04, 95% CI 0.02 to 0.09) and among caregivers practising deception about the children’s HIV positive status (aOR 0.38, 95% CI 0.19 to 0.74).ConclusionOnly half of the caregivers disclosed their child’s PHIV+ diagnosis. To facilitate disclosure, caregivers should be counselled about the appropriate age of disclosure and related misconceptions that hinder it. It is also apparent that caregivers need to be guided as to how to address children’s frequent questions about their health status. These interventions can be made in a one-on-one approach or through patient group counselling when they come to get healthcare services.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Perinatally acquired HIV-positive status disclosure and associated factors in Dire Dawa and Harar, Eastern Ethiopia: a health facility-based cross-sectional study

2018

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“…Several promising interventions have been designed or piloted (9, 15, 55, 56), with their common elements described below under clinical recommendations. Nearly all carry with them advice to be age- and context-sensitive.…”

Section: Discussionmentioning

confidence: 99%

Why Tell Children: A Synthesis of the Global Literature on Reasons for Disclosing or Not Disclosing an HIV Diagnosis to Children 12 and under

Krauss

Letteney

Okoro

2016

Front. Public Health

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While the psychological and health benefits of knowing one’s HIV diagnosis have been documented for adults and adolescents, practice is still in development for younger children. Moderating conditions for whether or not to tell a child he/she has HIV vary by region and local context. They include accessibility of treatment, consideration of HIV as a stigmatizing condition, prevalence of HIV, and an accompanying presumption that any illness is HIV-related, parent or caregiver concerns about child reactions, child’s worsening health, assumptions about childhood and child readiness to know a diagnosis, and lack of policies such as those that would prevent bullying of affected children in schools. In this systematic review of the global literature, we summarize the reasons caregivers give for telling or not telling children 12 and under their HIV diagnosis. We also include articles in which children reflect on their desires for being told. While a broad number of reasons are given for telling a child – e.g., to aid in prevention, adaptation to illness (e.g., primarily to promote treatment adherence), understanding social reactions, and maintaining the child–adult relationship – a narrower range of reasons, often related to immediate child or caregiver well-being or discomfort, are given for not telling. Recommendations are made to improve the context for disclosure by providing supports before, during, and after disclosure and to advance the research agenda by broadening samples and refining approaches.

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“…Children can learn to protect others when they know their status, while adolescents will know how to protect themselves from secondary infections and to protect others from HIV infections. HCWs in Kenya cited similar benefits of disclosure (Beima-Sofie et al 2014). In addition, the benefits of disclosure stated by HCWs are consistent with those cited by caregivers of HIV-infected children in developing countries (Bhattacharya et al 2011;Bikaako-Kajura et al 2006;Kiwanuka et al 2014;Madiba 2012a;Motshome & Madiba 2014;Vaz et al 2010;Vreeman et al 2014).…”

Section: Discussionmentioning

confidence: 94%

“…These included fear of stigmatization and discrimination, lack of disclosure skills, self-blame and guilt for infecting the child with HIV, and fear of being rejected by the child (Beima-Sofie et al 2014;Biadgilign et al 2009;Kallem et al 2010;Madiba & Mokwena 2012;Mahloko & Madiba 2012;Motshome & Madiba 2014;Vaz et al 2011;Vreeman et al 2014). HCWs also stated that often disclosure is delayed because the caregiver is not ready to disclose.…”

Section: Discussionmentioning

confidence: 99%

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Supplemental Information 1: Data Set

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The perspectives and practices of health care workers (HCWs) regarding disclosure to HIVinfected children have not been adequately investigated ten years after the roll-out of pediatrics antiretroviral therapy (ART). The aim of the study was to examine the opinions of HCWs about disclosure to HIV-infected children and determine their role in disclosure to children accessing ART in centers in South Africa. This was a cross-sectional survey using a semi-structured questionnaire among HCWs in ART centers at three hospitals and 48 primary health facilities in two provinces in South Africa. Of the 206 HCWs, 140 (68.2%) were nurses, 44 (21.5%) were lay counsellors, and 4 (2%) were doctors. The majority (n=183, 89.3%) felt that disclosure benefits children and they should be told about their HIV status. Over half (n=93, 51.4%) recommended 11-18 years as the appropriate age to disclose. Half (n= 99, 48.5%) said that caregivers should take the lead to disclose, 87 (42.7%) said that disclosure is a shared responsibility of caregivers and HCWs, and 18 (8.8%) said HCWs should lead disclosure. HCWs perceived their role as that of preparing the caregiver for disclosure and the child to understand the disease. However, the lack of guidelines and training on disclosure counselling for children affects their ability to fully participate in disclosure to children. There is a need to adopt t he World Health Organizations' disclosure guidelines for children and adapt them to the local cultural and community contexts and train HCWs to guide, support, and assist caregivers in their disclosure to HIV-infected children.PeerJ PrePrints | http://dx.doi.org/10.7287/peerj.preprints.748v1 | CC-BY 4.0 Open Access |

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Using Health Provider Insights to Inform Pediatric HIV Disclosure: A Qualitative Study and Practice Framework from Kenya

Cited by 40 publications

References 44 publications

Perinatally acquired HIV-positive status disclosure and associated factors in Dire Dawa and Harar, Eastern Ethiopia: a health facility-based cross-sectional study

Perinatally acquired HIV-positive status disclosure and associated factors in Dire Dawa and Harar, Eastern Ethiopia: a health facility-based cross-sectional study

Why Tell Children: A Synthesis of the Global Literature on Reasons for Disclosing or Not Disclosing an HIV Diagnosis to Children 12 and under

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