When the Time Comes To Talk About HIV: Factors Associated With Diagnostic Disclosure and Emotional Distress in HIV-Infected Children

Lester, Patricia; Chesney, Margaret A.; Cooke, Molly; Weiss, Robert G.; Whalley, Patrick; Perez, Berenice; Glidden, David V.; Petru, Ann; Dorenbaum, Alejandro; Wara, Diane W.

doi:10.1097/00126334-200211010-00006

Cited by 80 publications

(94 citation statements)

References 26 publications

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“…Other researchers have also reported children receiving full disclosure of a parent"s illness (Biadgilign et al, 2011;Nostlinger et al, 2004;Pilowsky et al, 2000) and a child"s illness (Oberdorfer et al, 2006) as early as 4-5 years. The age range of 10-14 years is in alignment with recommendations by prior researchers that children receive full disclosure of illness before they reach adolescence where more negative impacts have been noted (American Academy of Pediatrics, 1999;Blasini et al, 2004;Lester et al, 2002;Siripong et al, 2007). Additionally, this study revealed that important life events such as completion of a national examination should be incorporated into full disclosure planning and delivery.…”

Section: Discussionsupporting

confidence: 78%

HIV-positive parents, HIV-positive children, and HIV-negative children’s perspectives on disclosure of a parent’s and child’s illness in Kenya

Gachanja

Burkholder

Ferraro

2014

Preprint

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HIV disclosure from parent to child is complex and challenging to HIV-positive parents and healthcare professionals. This study was conducted to understand the lived experiences of HIV-positive parents and their children during the disclosure process in Kenya. Sixteen HIV-positive parents, seven HIV-positive children, and five HIV-negative children underwent semistructured in-depth interviews. Data was analyzed using the Van Kaam method in NVivo 8. Seven themes emerged that spanned the disclosure process. Presented here is data on the theme about how participants recommend full disclosure be approached to HIV-positive and negative children. Participants recommended disclosure as a process starting at five years with full disclosure delivered at 10 years when the child was capable of understanding the illness; or by 14 years when the child was mature enough to receive the news if full disclosure had not been conducted earlier. Important disclosure considerations include the parent’s and/or child’s health statuses, the number of infected persons’ illnesses to be disclosed to the child, the child’s maturity and understanding level, addressing important life events (e.g., taking a national school examination), and the person best suited to deliver full disclosure to the child. Recommendations are made for inclusion into HIV disclosure guidelines, manuals, and programs.

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Section: Discussionsupporting

confidence: 78%

HIV-positive parents, HIV-positive children, and HIV-negative children’s perspectives on disclosure of a parent’s and child’s illness in Kenya

Gachanja

Burkholder

Ferraro

2014

Preprint

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“…[7][8][9][10] A second perspective is from the child receiving the information. [11][12][13][14][15][16][17] Prevalence of disclosure to infected children varies. A recent review of pediatric disclosure literature from the United States, Canada, and Europe reported that 10-75% of HIVinfected children had been informed of their HIV status.…”

Section: Introductionmentioning

confidence: 99%

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

168

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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“…Although caregivers often delay disclosure till later age and adolescent, there is no evidence to suggest that disclosure negatively affects HIV-positive children. On the contrary, children who know their HIV diagnosis appear more likely to accept medical care and have higher self-esteem than those who are unaware of their diagnosis [10,14,28,29]. However, the few negative outcomes of disclosure documented, include the family's experience of stigma when children share their diagnosis with others, or an emotional burden for children when they are asked to keep HIV diagnosis a secret [28].…”

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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When the Time Comes To Talk About HIV: Factors Associated With Diagnostic Disclosure and Emotional Distress in HIV-Infected Children

Cited by 80 publications

References 26 publications

HIV-positive parents, HIV-positive children, and HIV-negative children’s perspectives on disclosure of a parent’s and child’s illness in Kenya

HIV-positive parents, HIV-positive children, and HIV-negative children’s perspectives on disclosure of a parent’s and child’s illness in Kenya

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

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