Caregivers Lack of Disclosure Skills Delays Disclosure to Children with Perinatal HIV in Resource-Limited Communities: Multicenter Qualitative Data from South Africa and Botswana

Madiba, Sphiwe

doi:10.1155/2016/9637587

Cited by 23 publications

(33 citation statements)

References 27 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Primary caregivers’ lack of confidence in their ability to disclose appropriately is another major barrier to HIV disclosure that has been reported in previous studies [70–72]. These findings highlight the crucial need for healthcare workers to support primary caregivers appropriately through the disclosure process.…”

Section: Discussionmentioning

confidence: 56%

See 1 more Smart Citation

Socio-demographic, clinical, and psychosocial factors associated with primary caregivers’ decisions regarding HIV disclosure to their child aged between 6 and 12 years living with HIV in Malawi

et al. 2019

View full text Add to dashboard Cite

The World Health Organisation (WHO) recommends that children living with HIV should be informed about their HIV status within the ages of 6 to 12 years using age-appropriate resources. The aim of this study was to assess the socio-demographic, clinical and psychosocial factors associated with primary caregivers’ decisions to disclose HIV to children living with HIV aged 6 to 12 years in Malawi. A cross-sectional study of 429 primary caregivers of children living with HIV were systematically recruited from all regions of the country. Information on HIV disclosure, family and child socio-demographic characteristics, child clinical characteristics, and child and family psychosocial characteristics was collected using validated instruments. Logistic regression was used to analyse data. The prevalence of non-disclosure of HIV status to children was 64 per cent. Concerns about the child’s inability to cope with the news (29%), a lack of knowledge on how to disclose HIV status (19%), and fear of stigma and discrimination (17%) were the main reasons for non-disclosure. On multivariate analysis, the odds of non-disclosure were higher among primary caregivers who were farmers (aOR 3.0; 95% CI: 1.1–8.4), in younger children (6–8 years) (aOR 4.1; 95% CI: 2.3–7.4), in children who were in WHO HIV clinical stage one (aOR 3.8; 95% CI: 1.4–10.2), and in children who were not asking why they were taking ARVs (aOR 2.9; 95% CI: 1.8–4.8). On the other hand, nondisclosure of HIV status was less likely in underweight children (aOR 0.6; 95% CI: 0.3–0.9). Many children living with HIV in Malawi are unaware of their HIV status. Non-disclosure is associated with a number of clinical and demographic characteristics. The findings highlight the need to provide guidance and support to primary caregivers to help them to effectively disclose HIV status to their children.

show abstract

Section: Discussionmentioning

confidence: 56%

“…Older children are simply more likely to ask questions and engage adults in conversation. For example, Madiba (2016) found that caregivers in Botswana and South Africa interpreted children’s frequent questions about their condition as a sign of maturity, that they are ready to be told about their HIV status [51].…”

Section: Discussionmentioning

confidence: 99%

Socio-demographic, clinical, and psychosocial factors associated with primary caregivers’ decisions regarding HIV disclosure to their child aged between 6 and 12 years living with HIV in Malawi

et al. 2019

View full text Add to dashboard Cite

show abstract

“…In our study, only children who were at least 7 years old were reported to be fully disclosed. HIV disclosure rates to children in Sub-Sahara Africa remain low, some studies attribute this to health worker and caregiver lack of skills to disclose to children [29, 30]. Training health workers and caregivers in disclosure skills has improved disclosure rates in most places [29, 30].…”

Section: Discussionmentioning

confidence: 99%

Predictors of loss to follow-up among children on long-term antiretroviral therapy in Zambia (2003–2015)

Mutanga¹,

Mutembo

Ezeamama

et al. 2019

BMC Public Health

View full text Add to dashboard Cite

Background Retention in care is critical for children living with HIV taking antiretroviral therapy (ART). Loss to follow-up (LTFU) is high in HIV treatment programs in resource limited settings. We estimated the cumulative incidence of LTFU and identified associated risk factors among children on ART at Livingstone Central Hospital (LCH), Zambia. Methods Using a retrospective cohort study design, we abstracted data from medical records of children who received ART between 2003 and 2015. Loss to follow-up was defined as no clinical and pharmacy contact for at least 90 days after the child missed their last scheduled clinical visit. Non-parametric competing risks models were used to estimate the cumulative incidence of death, LTFU and transfer. Cause-specific Cox regression was used to estimate the hazard ratios of the risk factors of LTFU. Results A total of 1039 children aged 0–15 years commenced ART at LCH between 2003 and 2015. Median duration of follow-up was 3.8 years (95% CI: 1.2–6.5), median age at ART initiation was 3.6 years (IQR: 1.3–8.6), 179 (17%) started treatment during their first year of life. At least 167 (16%) were LTFU and we traced 151 (90%). Of those we traced, 39 (26%) had died, 71 (47%) defaulted, 20 (13%) continued ART at other clinics and 21 (14%) continued treatment with gaps. The cumulative incidence of LTFU for the entire cohort was 2.7% (95% CI: 1.9–3.9) at 3 months, 4.1% (95% CI: 2.9–5.4) at 6 months and 14.1% (95% CI: 12.4–16.9) after 5 years on ART. Associated risk factors were: 1) non-disclosure of HIV status at baseline, aHR = 1.9 (1.2–2.9), 2) No phone ownership, aHR = 2.1 (1.6–2.9), 3) starting treatment between 2013 to 2015, aHR = 5.6 (2.2–14.1). Conclusion Among the children LTFU mortality and default were substantially high. Children who started treatment in recent years (2013–2015) had the highest hazard of LTFU. Lack of access to a phone and non-disclosure of HIV-status to the index child was associated with higher hazards of LTFU. We recommend re-enforcement of client counselling and focused follow-up strategies using modern technology such as mobile phones as adjunct to current approaches.

show abstract

“…The fear of disclosure to other people because of stigma will continue to hinder the disclosure of HIV serostatus to children [ 26 ]. Feeling unprepared to answer the child’s questions and lacking disclosure skills or knowledge of how to disclose have been identified as major barriers to the early initiation of disclosing to children [ 11 , 22 , 23 , 24 , 27 , 28 , 29 ].…”

Section: Introductionmentioning

confidence: 99%

The Consequences of Delaying Telling Children with Perinatal HIV About Their Diagnosis as Perceived by Healthcare Workers in the Eastern Cape; A Qualitative Study

Madiba

2020

Children

Self Cite

View full text Add to dashboard Cite

Although the benefits of disclosure are considerable, informing children with perinatal HIV of their own HIV status is often delayed to late adolescence. This study examined the social and contextual challenges that influence delaying disclosure to children and assessed the outcomes of delayed disclosure on the psychosocial health of children as perceived by the healthcare workers (HCWs) providing care to these children. Data were collected from HCWs via focus group discussions. Nurses, lay counsellors, social workers, and dieticians were selected from facilities in a rural South African health district. Thematic analysis was performed. The caregivers’ social context was the main barrier against informing children timely about their HIV diagnosis. The extent of the internalised HIV stigma influenced the delay in disclosing to the children. Delaying disclosure contributes to children’s refusing to take their medication, leads to the accidental disclosure of HIV, give rise to anger and resentment towards the caregiver, increase the risk of secondary transmitting of HIV, and poor health outcomes. It is essential to train HCWs to support caregivers and children through the disclosure process to ensure that caregivers realise the benefits of disclosure. Strategies to encourage caregivers to disclose early should be sensitive to their concerns about the negative impacts of disclosure.

show abstract

Caregivers Lack of Disclosure Skills Delays Disclosure to Children with Perinatal HIV in Resource-Limited Communities: Multicenter Qualitative Data from South Africa and Botswana

Cited by 23 publications

References 27 publications

Socio-demographic, clinical, and psychosocial factors associated with primary caregivers’ decisions regarding HIV disclosure to their child aged between 6 and 12 years living with HIV in Malawi

Socio-demographic, clinical, and psychosocial factors associated with primary caregivers’ decisions regarding HIV disclosure to their child aged between 6 and 12 years living with HIV in Malawi

Predictors of loss to follow-up among children on long-term antiretroviral therapy in Zambia (2003–2015)

The Consequences of Delaying Telling Children with Perinatal HIV About Their Diagnosis as Perceived by Healthcare Workers in the Eastern Cape; A Qualitative Study

Contact Info

Product

Resources

About