Child, Caregiver, and Health Care Provider Perspectives and Experiences Regarding Disclosure of HIV Status to Perinatally Infected Children in Lima, Peru

Baker, A; Bayer, Angela M.; Kolevic, Lenka; Najarro, Lizzete; Viani, Rolando M.; Deville, Jaime G.

doi:10.1177/2325957417752257

Cited by 11 publications

(33 citation statements)

References 22 publications

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“…However, the study found that negative reactions did not last long if children underwent post-disclosure counselling. This is in line with the findings in Peru (Baker et al, 2018).…”

Section: Discussionsupporting

confidence: 93%

“…Similar to findings by WHO (2O11) and Baker et al (2018), the health professionals in this study expressed that disclosure of HIV status had more advantages than disadvantages. Disclosing HIV status meant that the child was able take responsibility for their health management and that communication was free and open.…”

Section: Discussionsupporting

confidence: 88%

“…The most distressing experience was reported to be responding to children's questions about the condition for which they were being managed. This finding is similar to those documented by Vreeman et al (2010), Vaz (2010) and Baker et al (2018). Based on the responses given to the children's questions, it was evident that the children's concerns were not fully addressed.…”

Section: Discussionsupporting

confidence: 83%

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Caring for HIV-positive children: healthcare providers' pre-and post-disclosure experiences in Nairobi, Kenya

Makworo

Odero

2019

African Journal of Midwifery and Women's Health

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Background The number of children living with HIV has increased worldwide, largely due to improvements in antiretroviral therapy. Most of these children are living in sub-Saharan Africa. The rate of disclosure to children of their HIV-positive status is low in low-resource countries compared to high-resource countries. Aim To explore health professionals' experiences of caring for HIV-positive children before and after their HIV-positive status was disclosed to them. The health professionals included nurses, counsellors, nutritionists, social workers, pharmacists and clinicians with at least 1 year of experience at the paediatric section of the comprehensive care centre. Methods Nine health professionals were interviewed. Findings Results revealed that there were more challenges before disclosure than after. The main challenge was communicating with the children. The children's main concerns before disclosures included the reason for treatment and its duration, and clinic follow-up. Conclusions Health professionals should be trained on the benefits of HIV disclosure to children, in order to allow for open and direct communication between healthcare providers, parents/carers and children.

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“…However, the study found that negative reactions did not last long if children underwent post-disclosure counselling. This is in line with the findings in Peru (Baker et al, 2018).…”

Section: Discussionsupporting

confidence: 93%

Section: Discussionsupporting

confidence: 88%

Section: Discussionsupporting

confidence: 83%

See 1 more Smart Citation

Caring for HIV-positive children: healthcare providers' pre-and post-disclosure experiences in Nairobi, Kenya

Makworo

Odero

2019

African Journal of Midwifery and Women's Health

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“…Prior studies in South Africa and elsewhere reported similar practices. 2 , 15 , 44 The current study and others found that caregivers’ concerns and fears are the main barriers to timely disclosure to children with PHIV. 1 , 12 , 13 , 27 …”

Section: Discussionmentioning

confidence: 51%

Telling Children with Perinatal HIV About Their HIV Serostatus: Healthcare Workers’ Practices and Barriers to Disclosing in a South African Rural Health District

Madiba

Diko

2021

J Prim Care Community Health

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In South Africa, caregivers and healthcare workers (HCWs) lack confidence and skills to disclose to children with perinatal HIV (PHIV). Moreover, existing disclosure guidelines do not provide strategies on how to approach disclosure. Although the caregiver has been endorsed as a responsible person to disclose to the child, the involvement of HCWs in the process is critical. Yet research suggests that many HCWs are reluctant to perform disclosure. This study examines the involvement in, practices of, and barriers against HCWs’ disclosing to children with PHIV. Methods: We conducted 8 focus group discussions with a total of 51 HCWs comprising nurses, lay counsellors, social workers, and dieticians. The HCWs were selected from 23 health facilities in a rural South African health district by purposive sampling. Data were transcribed verbatim, and data analysis followed qualitative thematic analysis. Results: A high proportion of HCWs had no formal training in pediatric disclosure and some had never disclosed to children. Those who routinely disclosed approached disclosure as an ongoing process that unfolded over time. They ensured caregiver readiness as a necessary step in the disclosure process. The main barriers for HCWs to participate fully in the disclosure process were the lack of relevant disclosure guidelines, inadequate disclosure skills, and a shortage of skilled staff. Inadequate skills affected the confidence of the HCWs to disclose, while a lack of standardized disclosure guidelines and HCWs’ reliance on personal experience during disclosure resulted in confusion and uncertainty among them due to the inconsistencies in their approach to disclosure. Conclusion: This study confirms the urgent need to train HCWs to attain skills and confidence in disclosure. Training HCWs in standardized disclosure counselling would lead to an increase in the rate of disclosure to children. It is essential that the district adapt the disclosure guidelines to the local context for use in health facilities.

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“…It is plausible that older children and adolescents living with HIV have adequate knowledge about HIV, have become responsible for self-care and so disclosure of status is necessary for adherence to ART. In Ghana, it has been established that adolescents living with HIV who were knowledgeable about HIV/AIDS were more likely to have their HIV status disclosed to them [ 35 , 36 ].…”

Section: Discussionmentioning

confidence: 99%

Disclosure and health-related outcomes among children living with HIV and their caregivers

2021

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Background The prevalence of disclosure of status to children living with the Human Immunodeficiency Virus (HIV) is low in most sub-Saharan African countries, leading to poor compliance and adverse psychological outcomes in these children. This study examined the influence of disclosure on health outcomes in children living with HIV and their caregivers. Methods Using a cross-sectional design, 155 HIV-positive children between age 6–15 years and their caregivers were administered standardized questionnaires measuring adherence to medication, children's psychological well-being, caregiver burden, and caregivers’ psychological health. Results Results indicated that only 33.5% of the children sampled knew their status. Disclosure of HIV status was significantly related to medication adherence, psychological wellbeing, the burden of caregiving, and the length of the disclosure. A child’s age and level of education were the only demographic variables that significantly predicted disclosure of HIV status. In a hierarchical analysis, after controlling for all demographic variables medication adherence, psychological well-being and burden of caregiving were found to be significant predictors of disclosure of status in children living with HIV. Conclusions Findings suggest the need for disclosure of status among children living with HIV for a positive impact on their medication adherence and psychological health. These findings underscore the need for the development of context-specific interventions that will guide and encourage disclosure of status by caregivers to children living with HIV.

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Child, Caregiver, and Health Care Provider Perspectives and Experiences Regarding Disclosure of HIV Status to Perinatally Infected Children in Lima, Peru

Abstract: Culturally appropriate guidelines and training for HCPs and caregivers are needed to support disclosure of children's HIV status and ongoing support for CLHIV.

Cited by 11 publications

References 22 publications

Caring for HIV-positive children: healthcare providers' pre-and post-disclosure experiences in Nairobi, Kenya

Caring for HIV-positive children: healthcare providers' pre-and post-disclosure experiences in Nairobi, Kenya

Telling Children with Perinatal HIV About Their HIV Serostatus: Healthcare Workers’ Practices and Barriers to Disclosing in a South African Rural Health District

Disclosure and health-related outcomes among children living with HIV and their caregivers

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