Factors affecting disclosure of serostatus to children attending Jinja Hospital Paediatric HIV clinic, Uganda

Namasopo-Oleja, M. Sophie; Bagenda, Danstan; Ekirapa-Kiracho, Elizabeth

doi:10.4314/ahs.v15i2.6

Cited by 36 publications

(50 citation statements)

References 22 publications

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“…In addition, parents/guardians fear that the child could have negative emotional consequences after their diagnosis has been disclosed to them. Similar studies [ 27 , 16 , 21 , 19 , 28 ], have reported that parents fear that the child will cry, be sad, run away, harm themselves and lose hope.…”

Section: Discussionmentioning

confidence: 57%

“…This discrepancy may have been contributed by complete lack of standardized national training for paediatric HIV disclosure that varied in content and duration [ 16 , 20 ]. Similar studies have reported missing contents in paediatric HIV disclosure training including on the appropriate age and maturity level to initiate the process of disclosure [ 21 ]. WHO has recommended that paediatric HIV disclosure training for healthcare providers should cover the following vital areas: stigma, privacy, culturally appropriate disclosure process, communication based on child’s age, HIV information to parents/guardians and children, emotional preparation and management, responding to children’ concerns, and planning for the future [ 22 ].…”

Section: Discussionmentioning

confidence: 83%

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“Experiences with disclosure of HIV-positive status to the infected child”: Perspectives of healthcare providers in Dar es Salaam, Tanzania

et al. 2016

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BackgroundThe specific age to which an HIV infected child can be disclosed to is stipulated to begin between ages 4 and 6 years. It has also been documented that before disclosure of HIV positive status to the infected child. Health care providers should consider children’s cognitive-developmental ability. However, observation and situation analysis show that, health care providers still feel uncomfortable disclosing the HIV positive status to the infected child. The aim of the study was to explore healthcare providers’ experiences in disclosure of HIV-positive status to the infected child.MethodsA qualitative study involving 20 health care providers who attend HIV-positive children was conducted in September, 2014 in Dar es Salaam, Tanzania. Participants were selected from ten HIV care and treatment clinics (CTC) by purposive sampling. An interview guide, translated into participants’ national language (Kiswahili) was used during in-depth interviews. Sampling followed the principle of data saturation. The interviews focused on perspectives of health-care providers regarding their experience with paediatric HIV disclosure. Data from in-depth interviews were transcribed into text; data analysis followed qualitative content analysis.ResultsThe results show how complex the process of disclosure to children living with HIV can be to healthcare providers. Confusion was noted among healthcare providers about their role and responsibility in the process of disclosing to the HIV infected child. This was reported to be largely due to unclear guidelines and lack of standardized training in paediatric HIV disclosure. Furthermore, healthcare providers were concerned about parental hesitancy to disclose early to the child due to lack of disclosure skills and fear of stigma. In order to improve the disclosure process in HIV infected children, healthcare providers recommended further standardized training on paediatric HIV disclosure with more emphasis on practical skills and inclusion of disclosure content that is age appropriate for children with HIV.DiscussionThe disclosure process was found to be a complex process. Perspectives regarding disclosure in children infected with HIV varied among healthcare providers in terms of their role in the process, clear national guidelines and appropriate standardized training for paediatric disclosure. Consistent with other studies, healthcare providers reported difficulties during disclosure because parents /guardians largely fear blame, social stigma, child's negative emotional reaction when disclosed to and have concerns about the child being too young and immature to understand the HIV condition.ConclusionsIn order to prevent inconsistencies during the disclosure process, it is important to have in place clear guidelines and standardized paediatric HIV disclosure training for healthcare providers. This would help improve their skills in paediatric disclosure, leading to positive health outcomes for children infected with HIV.

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Section: Discussionmentioning

confidence: 57%

Section: Discussionmentioning

confidence: 83%

“Experiences with disclosure of HIV-positive status to the infected child”: Perspectives of healthcare providers in Dar es Salaam, Tanzania

et al. 2016

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“…Disclosing to HIV-infected children about their HIV sero-positive status (i.e. informing HIV-infected children that they have HIV) has been associated with proper adherence to medications and can help children to cope with the stresses associated with HIV infection [ 6 , 7 , 9 , 14 , 16 ]. However, studies suggest that HIV status disclosure is often delayed until after 10 years of age because it is believed that prior to this age children will not be able to understand the information or deal with the stigma associated with the diagnosis [ 18 ].…”

Section: Introductionmentioning

confidence: 99%

Determinants and processes of HIV status disclosure to HIV - infected children aged 4 to 17 years receiving HIV care services at Baylor College of Medicine Children’s Foundation Tanzania, Centre of Excellence (COE) in Mbeya: a cross-sectional study

et al. 2015

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BackgroundDisclosure of HIV sero-status to HIV-infected children is associated with reduced risk of death and better adherence to antiretroviral drugs. However, caregivers find it difficult to determine when and how they should disclose the HIV sero-positive status to HIV-infected children. In this study, we assessed the determinants and processes of HIV status disclosure to HIV-infected children aged 4 to 17 years receiving HIV care services at the Baylor College of Medicine Children's Foundation Tanzania, Centre of Excellence (COE) in Mbeya.MethodsThis was a cross-sectional study conducted among 334 caregivers of HIV positive children attending the Baylor COE in Mbeya, Tanzania. Data were collected using quantitative and qualitative research methods. Quantitative data were collected on socio-demographic characteristics of children and caregivers using an interviewer-administered questionnaire. Data were entered into Epi-Info version 3.5.1 and analyzed using STATA version10. Univariable and multivariable logistic regression analyses were conducted to obtain odds ratios (OR) and 95 % confidence intervals (95 % CI) associated with disclosing HIV positive status to HIV-infected children. Qualitative data were collected on the processes used in accomplishing the HIV status disclosure event using case histories and key informant interviews and analyzed manually using latent analysis techniques.ResultsAbout one-third of the caregivers (32.6 %) disclosed the children’s HIV sero-positive status to them. Disclosure was more likely among children 10 years or older (adjusted OR [AOR] = 8.8; 95 % CI: 4.7, 16.5), caregivers with knowledge about HIV disclosure (AOR = 5.7; 95 % CI: 2.3, 13.7) and those earning more than Tsh 99,999 (US $62.5) per month (AOR = 2.4; 95 % CI: 1.3, 4.5). Qualitative findings showed that caregivers used a diversity of approaches to complete the HIV status disclosure event including direct, third-party, event-driven and use of drawings.ConclusionsOur study shows that disclosure is common among older children and is largely driven by the caregivers’ knowledge about HIV status disclosure and monthly earnings. HIV status disclosure was accomplished through a variety of approaches. These findings suggest a need to provide caregivers with knowledge about HIV status disclosure approaches to improve HIV status disclosure to HIV-infected children.Electronic supplementary materialThe online version of this article (doi:10.1186/s12887-015-0399-3) contains supplementary material, which is available to authorized users.

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“…Similar barriers to disclose by parents/ caregivers as reported by HCWs include: parents' fear of being blamed by their children, parents feeling guilty and fear that the child will tell others, 24,25 child being too young and cannot keep secret, 20 and social stigma surrounding the HIV diagnosis. 25 Other studies 3,14,20,26,27 however reported different reasons which include: fear of the child crying, fear of being very sad, fear of the child run away, and fear of him or herself losing hope.…”

Section: Methodsmentioning

confidence: 99%

Health Care Providers Perception and Practice of HIV Disclosure to Sero-Positive Children and Adolescents in a Tertiary Health Facility in Abuja, Nigeria

Kwaghe

Dike

2018

JCRHAP

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Background: Ideally, disclosure of HIV status to infected children and adolescents should involve both their health care workers and their parents/caregivers. Most studies on disclosure in children have focus mainly on parents/caregivers with little information on health care workers. We conduct this study to evaluate the practice, perception of the healthcare workers in our health facility on disclosure to infected children and adolescents. It is envisaged that such information will help in the design of better strategies on disclosure in our environment. Methods: A cross sectional hospital based study was conducted among health care workers at the special treatment clinic, and heart to heart unit of the University of Abuja Teaching Hospital, Gwagwalada from January to March 2017 for the above objective. A structured questionnaire was used to collect information on disclosure among the healthcare workers, which include among others: their bio-data, knowledge, perception, and practice on disclosure in the two service areas of the hospital. Results: Of the 80 health care workers interviewed, 60(75.0%) were females, 11(13.8%) were doctors, 9(11.3%) nurses, 17(21.3%) monitoring/evaluation/record clerks, and 16(20.0%) either voluntary counseling and testing counselors or adherence counselors. Their mean age and duration in service in the two areas were 39.70±7.10 and 7.93±4.99 years respectively. Over half 48(60.0%) of the health care workers were unaware of the hospital having guideline on disclosure, 64(80.0%) have not been trained, and 68(85.0%) does not know any key information on disclosure. While all 80(100%) felt that disclosure was a good practice for better adherence, only 16(20.0%) had actually disclosed, with 6(37.5%) not seeking any formal permission from parent/caregivers before disclosing. Ages 8-16 years was recommended by 60(75%) as the appropriate age to disclose, however 28(35.0%) recommended age 14-16 years. Over half of the respondents 58(72.5%) admitted that disclosure should be a shared responsibility between themselves and the caregivers, most however perceive their role as only preparing the parents/caregivers for disclosure, and providing ongoing counseling to both the parents/caregivers and the children and adolescents. Lack of training on disclosure, and none availability of guideline in the health institution were major setback on the ability of the healthcare providers to fully participate in disclosure process. Conclusion: While healthcare providers support the idea of disclosing at mid and late adolescent, their perceived role was that of support and provision of ongoing counseling. Lack of training and none availability of disclosure guideline affects their perceived role. There is need to train and retrain healthcare workers on disclosure guideline, and making such guideline available in the health facilities.

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Factors affecting disclosure of serostatus to children attending Jinja Hospital Paediatric HIV clinic, Uganda

Cited by 36 publications

References 22 publications

“Experiences with disclosure of HIV-positive status to the infected child”: Perspectives of healthcare providers in Dar es Salaam, Tanzania

“Experiences with disclosure of HIV-positive status to the infected child”: Perspectives of healthcare providers in Dar es Salaam, Tanzania

Determinants and processes of HIV status disclosure to HIV - infected children aged 4 to 17 years receiving HIV care services at Baylor College of Medicine Children’s Foundation Tanzania, Centre of Excellence (COE) in Mbeya: a cross-sectional study

Health Care Providers Perception and Practice of HIV Disclosure to Sero-Positive Children and Adolescents in a Tertiary Health Facility in Abuja, Nigeria

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