Families affected by HIV: Parents’ and children's characteristics and disclosure to the children

Abstract

The reduced risk of mother-to-child transmission due to improved HIV treatment has resulted in an increasing number of healthy children born to mothers living with HIV. The study's objective was to identify the number of parents or caregivers in a sample of persons living with HIV in Flanders, the number of HIV-affected children as well as specific family-related characteristics. Using a structured survey quantitative data were assessed on a total of 628 patients at three Flemish Aids reference centres. Qualitative data were collected in a small sub-sample of African caregivers living in Flanders. Twenty-seven per cent of the overall sample had children younger than 18 years, totalling 165 HIV-affected families with 279 children. Parents from developing countries had significantly more children than European parents. One hundred and eighty-two (68%) of all children were HIV-negative, while the HIV status of 75 (28%) was unknown. Disclosure rate was low: 26 (10%) children were aware of the parental HIV disease. The study shows that HIV-affected families have to deal with complex psychosocial issues such as migration, family illness, family secrecy around HIV and disclosure. Service implications are discussed.

Disclosure of Maternal HIV Status to Children: To Tell or Not To Tell … That is the Question

“…Various rates of disclosure of parental HIV/AIDS to children have been reported, ranging from 0% (Esposito et al, 1999) to 74% (Armistead et al, 1997(Armistead et al, , 2001Bauman et al, Camacho et al, 2002;Forsyth et al, 1996;Lee & Rotheram-Borus, 2002;Murphy et al, 2001;Murphy, Marelich et al, 2002;Nagler et al, 1995;Niebuhr et al, 1994;Nostlinger et al, 2004;Ostrom et al, 2006;Pilowsky et al, 1999;Rotheram-Borus et al, 1997;Schrimshaw & Siegel, 2002;Shaffer et al, 2001;Sowell et al, 1997;Tompkins et al, 1999;Wiener et al, 1998), and likely depend on such factors as child age, disease progression, quality of the parent-child relationship, and general cultural influences on disclosure-and child-related beliefs. Although parents commonly cite protection from distress as a major reason for withholding illness-related information from children, clinical observation indicates that children typically have some sense that something is wrong anyway (Melvin, 1996).…”

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

“…Overall, parents appear to favor disclosure at their own time without prompting from HCPs; they did acknowledge needing guidance in the process. Parents have reported requiring guidance during disclosure preparation (Heeren et al, 2012;Nam et al, 2009;Nostlinger et al, 2004;Oberdorfer et al, 2006;Rwemisisi et al, 2008;Vallerand et al, 2005;Vaz et al, 2010;Vaz et al, 2008). Prior researchers have called for discussions to occur between HCPs and parents to resolve differences that occur when…”

“…The age when most children received full disclosure of a parent"s or child"s illness was 14 years although there were outliers (3,19). 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).…”

Informing Adolescents of Perinatally Contracted HIV

“…Importantly, parents who disclosed the HIV status to their children experienced less depression and considered disclosure as having an overall positive effect on themselves and their families [1][2][3]. Reluctance to disclose the HIV status to children and youth is often based on the caregiver's concern for possible exposure to stigma and discrimination toward the whole family once the adolescent shares the diagnosis with partners, peers, or the public [4][5][6].…”