Perceptions of children with HIV infection when not told for so long: Implications for diagnosis disclosure

Instone, Susan

doi:10.1067/mph.2000.107338

Cited by 46 publications

(56 citation statements)

References 12 publications

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“…8 Here, similar to other studies, 12,32 children had a sense of social isolation and emotional distress, noted in messages to not touch other people's belongings and not share common household items, and unexpressed questions and concerns resulting perhaps from messages that worrying will make them sicker, but also possibly reflecting cultural norms around parent-child communication.…”

Section: Discussionmentioning

confidence: 48%

Telling Children They Have HIV: Lessons Learned from Findings of a Qualitative Study in Sub-Saharan Africa

Vaz

Eng

Maman

et al. 2010

AIDS Patient Care and STDs

171

257

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HIV-infected children in developing countries are living longer lives as they gain access to antiretroviral treatment programs. As they grow older, their parents=guardians are faced with the difficult decision of if, when, and how to inform their child of his=her HIV status. Both negative and positive social, psychological, and behavioral impacts of disclosure to children have been reported, including improved adherence to medication regimens. Understanding the disclosure process from the perspective of HIV positive children, therefore, is critical to developing these interventions. Through children's experiences we can learn about what works well, what needs to be strengthened, and what is missing in current disclosure practices. We conducted in-depth interviews with eight caregiver-child dyads in Kinshasa, Democratic Republic of the Congo. The children were in a comprehensive HIV pediatric care and treatment program and had already been told their HIV diagnosis. For the analysis we placed particular emphasis on children's reports of communication with their caregivers and health care providers about their illness. Patterns emerged of limited communication between children and their caregivers as well as their providers, before, during, and after disclosure. From the perspective of children in this study, disclosure was largely a discrete event rather than a process. Sociocultural contexts surrounding HIV=AIDS, as well as health status, variations in parent-child communication and the relationships between health providers and children under their care, should inform psychosocial interventions delivered alongside treatment programs.

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Section: Discussionmentioning

confidence: 48%

Telling Children They Have HIV: Lessons Learned from Findings of a Qualitative Study in Sub-Saharan Africa

Vaz

Eng

Maman

et al. 2010

AIDS Patient Care and STDs

171

257

View full text Add to dashboard Cite

show abstract

“…Although disclosure has become part of the comprehensive care of HIV infected children in South Africa, caregivers and health care providers continue to struggle with disclosure to HIV infected children till later in adolescence [6,8,24,25]. The most common reasons for delaying disclosure include; fear of hurting the child, that the child is too young to understand, fear that the child will not be able to keep the secret and will be socially rejected and discriminated, fear that disclosure will have negative emotional consequences for the children, and because caregivers believed that they did not know how to tell or how to approach the disclosure process [5,12,17,26,27]. Although caregivers often delay disclosure till later age and adolescent, there is no evidence to suggest that disclosure negatively affects HIV-positive children.…”

Section: Introductionmentioning

confidence: 99%

Patterns of HIV Diagnosis Disclosure to Infected Children and Family Members: Data from a Paediatric Antiretroviral Program in South Africa

Madiba¹

2012

WJA

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The study examined the patterns of disclosing the HIV diagnosis to infected children and family members, and determined the demographic characteristics associated with disclosure. Semi structured interviews were conducted with caregivers of HIV infected children aged 4 -17 years receiving antiretroviral treatment (ART). A total of 149 caregivers were recruited from a paediatric HIV clinic of a district hospital in South Africa. Caregivers reported that 59 (39.6%) children were told their HIV diagnosis, and majority 36 (61%) were informed of the diagnosis by people other than their biological mothers. Older child age was a determining factor for HIV disclosure to children, 22 (37.2%) learned of their HIV diagnosis between 11 and 16 years. The mean age of disclosed children was 10.6 years. Caregivers took about 3 years after the initial HIV diagnosis to disclose to children, while 143 (99.3%) caregivers reported that disclosure to family members happened immediately after the child's HIV diagnosis. About 28 (31.5%) non-disclosed caregivers planned to disclose to the child between 12 and 18 years, while 13 (14.6%) were not sure about the ideal age to disclose to the child. The lack of consensus regarding the appropriate age for disclosure and the delayed age for future disclosure, suggest that despite increased access to ART for children, there are still significant barriers to disclosing HIV to infected children in this setting. There is a need for health care providers to support caregivers to disclose shortly after diagnosis especially in view of the older age of diagnosis among children enrolled in ART program in this setting.

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“…Furthermore, available data on HIV disclosure to infected children from studies conducted in developed and developing countries do not explain the low disclosure rates [10][11][12]. Literature further shows that, most studies on the prevalence and effects of HIV disclosure to children are mainly from developed countries [13,14].…”

Section: Introductionmentioning

confidence: 99%

Prevalence And Factors Associated With Disclosure Of HIV Diagnosis To Infected Children Receiving Antiretroviral Treatment In Public Health Care Facilities In Gauteng ,South Africa.

Madiba¹,

Mahloko²,

Mokwena³

2013

JCRHAP

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:HIV infected children who started antiretroviral therapy (ART) in public health facilities in South Africa have survived to older age and disclosure has become an essential part of their care. Available data on HIV disclosure to children were collected much earlier in the provision of ART in South Africa. The aim of the study was to (a) determine the characteristics of caregivers of pediatric HIV patients in Gauteng, South Africa, (b) estimate the prevalence and timing of HIV disclosure among these patients, and (c) assess the factors associated with disclosure status. A cross-sectional study was conducted among 286 caregivers of paediatric ART children aged 4-17 in two centres in Gauteng, South Africa. Bivariate and multivariate logistic regression analyses were carried out. The highest proportion of care givers were biological mothers (n=140, 49.3%). The mean age of the children was 8.5 years, (range 4-17 years). More than a third (n=99, 34%) were disclosed their HIV status, and the mean age at disclosure was 9.3 years, (SD = 2.7). Child's age older than 10 years (OR =1.63; 95% CI: 1.44-1.85), having a nonbiological caregiver (OR=1.75; 95% CI: 1.06-2.89), caregiver educational level (OR =0.64; 95% CI: 0.47-0.87), and caregiver's age older than 60 years (OR=1.02; 95% CI: 1.01-1.04), were significantly associated with HIV disclosure to infected children. The relatively higher prevalence of disclosure is attributed to increasing access to paediatric ART. Training healthcare providers to support caregivers in disclosure will increase the rate of disclosure to HIV infected children receiving ART in public health facilities.

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Perceptions of children with HIV infection when not told for so long: Implications for diagnosis disclosure

Cited by 46 publications

References 12 publications

Telling Children They Have HIV: Lessons Learned from Findings of a Qualitative Study in Sub-Saharan Africa

Telling Children They Have HIV: Lessons Learned from Findings of a Qualitative Study in Sub-Saharan Africa

Patterns of HIV Diagnosis Disclosure to Infected Children and Family Members: Data from a Paediatric Antiretroviral Program in South Africa

Prevalence And Factors Associated With Disclosure Of HIV Diagnosis To Infected Children Receiving Antiretroviral Treatment In Public Health Care Facilities In Gauteng ,South Africa.

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