Benefits of Disclosure of HIV Status to Infected Children and Adolescents: Perceptions of Caregivers and Health Care Providers

Gyamfi, Eric; Okyere, Paul; Appiah-Brempong, Emmanuel; Adjei, Rose Odotei; Mensah, Kofi Boamah

doi:10.1016/j.jana.2015.08.001

Cited by 50 publications

(61 citation statements)

References 12 publications

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“…However, the need for support is not meant to take away the caregivers' primary responsibility of disclosing; they only wanted to be supported by HCWs during the actual disclosure event. This was consistent with findings from the current research [3]. …”

Section: Discussionsupporting

confidence: 94%

“…Besides acquiring knowledge about HIV from counseling, Gyamfi and colleagues [3] argue that continuous counseling will make caregivers aware of the need to disclose which will subsequently increase early disclosure. Caregivers were also concerned that the child would react negatively to disclosure and felt that HCWs should train them on when and how to disclose to the child and provide guidance on how to approach the child for disclosure.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

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

2016

Nursing Research and Practice

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To promote the appropriate implementation of procedures for health disclosure to children, it is important to understand the reasons why caregivers delay the disclosure of healthcare information to children. This paper explored the views of caregivers on what makes disclosure to children with perinatal acquired HIV (PAH) difficult and what could make disclosure in these cases easier. Data were collected using focus group interviews with caregivers who were purposely selected from a multicenter study conducted in Botswana and South Africa. Forty-seven nondisclosed caregivers of children between 5 and 18 years who were receiving ART were interviewed. Caregivers felt that children should be told of their HIV-positive status despite the fact that none had disclosed this information to the children. The caregivers reported lack of disclosure skills but believed they were primarily responsible for disclosure to children and required support from healthcare workers (HCWs) during the disclosure process. They believed that counseling on how to approach disclosure and training on when and how to disclose will make the disclosure process easier. HCWs have a crucial role to play in promoting disclosure to perinatally infected children. The development of appropriate disclosure guidelines and training for HCWs will facilitate disclosure to children.

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Section: Discussionsupporting

confidence: 94%

Section: Discussionmentioning

confidence: 99%

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

2016

Nursing Research and Practice

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“…One of the greatest psychosocial challenges that parents and caregivers of HIV-infected children face is disclosure of HIV status to their infected children, even though there are a myriad of benefits associated with disclosure [3]. …”

Section: Introductionmentioning

confidence: 99%

Prevalence of, and barriers to the disclosure of HIV status to infected children and adolescents in a district of Ghana

Gyamfi

Okyere

Acheampong

et al. 2017

BMC Int Health Hum Rights

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BackgroundGlobally there are about 3.3million children under the age of 15 years living with HIV. Of this number, 88% live in sub-Saharan Africa. In Ghana, an estimated 33,000 children were said to be living with the HIV infection in 2012. Lack of disclosure adversely affects the well-being of the child, including access to paediatric HIV treatment and care and adherence to treatment. However, the greatest psychosocial challenges that parents and caregivers of HIV-infected children face is disclosure of HIV status to their infected children. This study sought to determine the prevalence of and the barriers to the disclosure of HIV status to infected children and adolescents in Lower Manya-Krobo District in Ghana.MethodsA cross sectional study with a sample of 118 caregivers of HIV infected children and adolescents aged 4–19 years attending three HIV clinics in the Lower Manya Krobo District, and 10 key informants comprising of healthcare workers and HIV volunteer workers involved in the provision of care to infected children and their families.ResultsThe prevalence of disclosure was higher. Main barriers to disclosure identified in this study included age of child, perceived cause of HIV, stigma attached to HIV, child’s inability to keep diagnosis to self and fear of psychological harm to child.ConclusionThere is the need for the Ghana Health Service in conjunction with the Ghana Aids Commission and the National Aids Control Programme to develop comprehensive context-based disclosure guidelines.

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“…Disclosure of HIV status to children is essential for disease management. Studies on disclosure in children have largely described it from the health provider's perspective [1][2][3] or caregivers perspective [4,5], but not much study has been done to characterize the actual impact of disclosure on the children as reported by the children themselves. For these children, learning about their HIV diagnosis is necessary to building trusting family relationships and an important step towards long-term disease management and transition from paediatric/ adolescent care into adult care settings.…”

Section: Introductionmentioning

confidence: 99%

“…Caregivers' and children's reports about children's feelings and distress can however differ [10]. Caregivers have reported both negative and positive social, psychological, and behavioral impacts of disclosure on children, including improved adherence to antiretroviral drugs [3,11], better self esteem [6], improved family relationship [12] and depression [13]. Parents who are distressed may tend to see more distress in their children.…”

Section: Introductionmentioning

confidence: 99%

HIV Disclosure in Children in a Tertiary Hospital in Southern Nigeria–Child’s Perspective

Eneh

Ugwu

Paul

2020

AJMAH

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Background: Disclosure of HIV status to children is essential for disease management. Studies on disclosure in children have largely described it from the health provider's perspective or caregiver's perspective. Caregivers' and children's reports about children's feelings and distress can however differ. Understanding the disclosure process from the perspective of HIV-positive children will therefore better portray the impact it had on them. Aim: The aim of the study was to explore from the child's perspective the process of disclosure, the impact it had on them, how they have coped and suggestions on how they think it could be done better. Methods: A cross-sectional study of HIV-infected children and adolescents aged 8-18 years who are aware of their status attending paediatric HIV clinic at the University of Port Harcourt Teaching Hospital (UPTH), Port Harcourt, Nigeria from April 2015 to March 2016. Data were collected using an open-ended questionnaire administered by a Paediatric health care provider. Information sought included: Biodata (age, gender), educational levels of the child, family characteristics (primary caregiver, orphan status), age at disclosure, process of disclosure, the impact of the disclosure, how they have coped, what they did not like about the way they were told and suggested better ways of telling the children. Results: Seventy-eight HIV-positive children and adolescents were interviewed. Their ages ranged from 8 -18 yrs with a mean age of 14.74±2.23 years. Forty (51.3%) were males, 50 (64.1%) were Eneh et al.; AJMAH, 18(1): 16-27, 2020; Article no.AJMAH.55078 17 in secondary schools, 43 (55.1%) were orphans and the mode of transmission was vertical in 70 (89.7%). In majority 33 (42.3%), the biologic mother was the primary caregiver. Majority of the children 34 (43.6%) had their status disclosed to them between 13 and 14 years. The mother alone did the disclosure in 30 (38.5%). Thirty-six (46.2%) were already aware of their status before disclosure. Disclosure was a one-off event without discussions in 48 (61.5%). The commonest immediate reactions was depression 48 (61.5%). The majority 48(61.5%) became more prayerful as a coping strategy. All 78 (100%) agreed that disclosure has positively impacted on their taking their ARV drugs and clinic attendance. Concerning suggestions from the children, 36 (46.2%) said the most appropriate age for disclosure should be 12-13 years, 54 (69.2%) suggest that both parents should do the disclosure while 60 (76.9%) said that the children should be told how they got infected. Their major concern was having to take drugs for life 60 (76.9%). Conclusion: Disclosure process is suboptimal. Understanding the disclosure process from the perspective of HIV-infected children, therefore, is critical to developing interventions to improve disclosure. Most of the parent's fears of negative impact of status disclosure may be exaggerated. There is need for health care providers to develop a plan with the caregivers of HIV-infected children on the optimal disclo...

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Benefits of Disclosure of HIV Status to Infected Children and Adolescents: Perceptions of Caregivers and Health Care Providers

Cited by 50 publications

References 12 publications

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

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

Prevalence of, and barriers to the disclosure of HIV status to infected children and adolescents in a district of Ghana

HIV Disclosure in Children in a Tertiary Hospital in Southern Nigeria–Child’s Perspective

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