Table 1.
Summaries of quantitative studies
Study | Ref # | Sample description a | Location | Study design | Main findings b |
---|---|---|---|---|---|
Murphy et al. (2011) | [65] | 80 HIV? mothers, 80 children Children age: 6–12 |
Los Angeles, US | Longitudinal experimental design, 9 months time span | Disclosure rate Overall 20% (16/80), 33.3% in the intervention group (13/39), 7.3% in the control group (3/41) |
Xu et al. (2010) | [57] | 116 children from HIV-affected families, 109 from unaffected ones in rural areas Children age: 8–17 |
Yunnan, China | Cross sectional survey |
Disclosure rate N/A
Children outcomes Disclosure was associated with lower PedsQL scores: emotional functioning (P < 0.05), social functioning (P < 0.05) |
Murphy et al. (2009) | [60] | 135 HIV? mothers, 135 children Children age: 6–11 |
Los Angeles, US | Sequential longitudinal design, 7 years time span |
Disclosure rate 36% at baseline Children outcomes Disclosure was associated with higher self-concept (P < 0.01) Family outcomes Disclosure was associated with higher family cohesion (P < 0.05). |
Palin (2009) | [33] | 103 HIV? mothers Children age: 11–16 |
Pretoria, South Africa | Cross sectional survey |
Children awareness rate 44% Timing of disclosure Time since diagnosis (14% within 1 month, 50% within 1 year, 70% within 2 years) Disclosure approach 96% informed by mothers, 2% by grandparents, 2% by non-related person Predictors of disclosure Being married or widows Reasons for non-disclosure Concerns about children’s internalizing problems (70%), development problems (37%), negative feelings about the future (16%), and their ability of keeping secret (9%) Reactions Sadness (60%), worry (47%), fear (22%), rejection (16%) Children outcomes Disclosure was associated with more externalizing symptoms (P < 0.05), but not with internalizing behaviors |
Mellins et al. (2008) | [3] | 220 adolescents, 220 mothers, half of whom were HIV? Children age: 10–14 |
New York, US | Cross sectional survey |
Children awareness rate 66% Children outcomes Disclosure was associated with higher CDI depression score (7.0 vs. 5.1, P < 0.05), not with STAI-C anxiety score, or CBCL scores |
Delaney et al. (2008) | [18] | 66 HIV+ mothers, 66 children Children age: 5–18 |
Midwest, US | Cross sectional survey |
Children awareness rate 62% (41/66) 90% of mothers did not regret disclosure Disclosure approach 78% were informed by mothers Reasons for disclosure Wanted children to hear the diagnosis from mothers (Mean = 4.69 in a 5-point scale), children had a right to know (M = 4.5), wanted to reassure the children (M = 4.41) Reasons for non-disclosure Children deserved a carefree childhood (M = 4.38), children might be worried (M = 4.37) or scared (M = 4.19) Reactions Comforted mothers (M = 3.69), showed concern (M = 3.77) and wanted more information (M = 3.68) Children outcomes Comforted mothers (M = 3.89), remained worried (M = 3.65) |
DeBaets et al. (2008) | [45] | 64 primary health care workers, 131 community members Children age: N/A |
Rural Eastern Zimbabwe | Cross sectional survey |
Disclosure rate N/A
Timing of disclosure (preferred children’s age) Partial disclosure (10.8 ± 4.2), full disclosure(14.4 ± 4.5) Disclosure approach (preferred) Combinations discloses: involving a health care worker (56%), family member (52%). Preferred family members: father’s sister (37%), grandmother (40%), partner (15%) |
Tompkins (2007) | [40] | 23 HIV+ mothers, 23 non-infected children Children age: 9–16 |
Los Angeles, US | Cross sectional survey |
Disclosure rate 61% Timing of disclosure Time since diagnosis (Mean = 5.4 years, SD = 4.31) Reasons for satisfaction in disclosure (For mothers) Children could participate in decision affecting them (100%), mothers felt less stress (86%), improved maternal health (71%), easier health seeking (64%), talked with children more (57%), children felt less stress and worry (57%) (For children) Better prepared for the future (93%), made decisions affecting them (86%), reduced mother’s stress (79%), were closer to mothers (79%), talked openly (67%), were less worried (50%) Reasons for non-disclosure Protected children, feared stigma, children were not in an appropriate developmental level Predicators of disclosure Single-parent (83% vs. 36%, P < 0.05), no association with income, education, ethnicity or mother’s age Children outcomes Disclosure was not associated with child functioning. Children asked to keep disclosure secret had lower social competence and more externalizing problems (P < 0.05). Children knew more than their mothers had disclosed had higher level of externalizing problems (P < 0.01) and lower level of behavioral competence (P < 0.05). |
Corona et al. (2006) | [17] | 274 HIV+ parents, 453 childrenc
Children age: 5–17 |
US | Cross sectional survey |
Children awareness rate 44% Predictors of non-disclosure Higher income, being in an HIV risk groups of heterosexual intercourse, higher CD4 #, greater social isolation, younger children Reasons for non-disclosure Children might emotionally react (67%), children might tell others (36%), did not know how to tell (28%) Children outcomes 11% were worried about catching HIV from parents |
Nostlinger et al. (2006) | [42] | 718 HIV+ parents, 1136 children from 15 European HIV treatment centers Children age: ≤18 |
10 Western European countries | Cross sectional survey |
Children awareness rate 21% Timing of disclosure Children’s age (to the elder child in one family) (Median = 11, Mean = 10.7, SD = 4.8) Scope of disclosure 78% informed about HIV, 22% chronic disease Disclosure approach 62% informed by parents, 11% with professional support Reactions Depressive (39%), mature (27%), anxious (11%) Reaction lasting time ≤1 month (23%), 1–6 months (14%), 6–12 months (11%), over 12 months (12%) |
Murphy et al. (2006) | [20] | 118 HIV+ mothers, 118 children Children age: 10–17 |
Los Angeles, US | Cross sectional survey |
Children awareness rate 37% Predictors of non-disclosure Disclosure-related stigma (P < 0.01) Children outcomes Children disclosed had lower CDI (4.44 vs. 7.37, P < 0.01), higher Piers-Harries Children’s self-concept: physical appearance and attributes (P = 0.008), popularity (P = 0.026), happiness and satisfaction (P = 0.01), were more likely to value school’s performance. |
Letteney and LaPorte (2004) | [19] | 88 HIV+ mothers Children age: 5-18 |
New York, US | Cross sectional survey |
Disclosure rate 67% Predictors of non-disclosure Using secrecy as a stigma management tool (P = 0.01), perceiving devaluation and discrimination (P = 0.01) |
Nostlinger et al. (2004) | [24] | 168 HIV+ parents, 279 childrend
Children age: ≤17 |
Belgium | Cross sectional survey |
Children awareness rate 26% Timing of the disclosure Children’s age (Median = 16) Predicators of disclosure Older children (P < 0.000), families from developing countries (P < 0.0005) |
Murphy et al. (2002) | [59] | 81 children living with HIV+ mothers Children age: 6–11 |
Los Angeles, US | Longitudinal study, 1 year time span |
Disclosure rate 40% (32/81) Children outcomes Disclosure was associated with higher children’s CDI negative self-esteem (1.2 vs. 0.48, P < 0.05) (between-group main effects), higher CDI interpersonal problems scores (1.14 vs. 0.67, P < 0.05) (at baseline), not with CBCL or household responsibilities scale. CDI negative mood, CDI total score decreased and household responsibilities increased for all children over time. |
Lee and Rotheram-Borus (2002) | [36] | 301 HIV+ parents, 395 adolescent children Children age: 11–18 |
New York, US | Longitudinal study, 5 year time span |
Disclosure rate 30% within 1 month, 6% within 2–3 months, 11% 4–12 months, 16% 1–3 year, 21% over 3 years, 12% non-disclosure till death Predictors of disclosure Being mothers, (HR = 2.02, 95% CI 1.25–3.26), being daughters (for maternal disclosure) (HR = 1.33, 95% CI 1.09–1.62), being elder children, higher # stressful life events, more severe diagnosis, more stigma children experienced (OR = 2.81, 95% CI 1.07–7.35), larger social networks Children outcomes Children disclosed: higher problem behaviors, decreased over time (slope = −0.002), more negative family events, decreased (slope = −0.01) Non-disclosed: increasing problem behaviors (slope = 0.003), disclosure was not associated with emotional distress, self-esteem, or parental bonding |
Kirshenbaum and Nevid (2002) | [29] | 58 HIV+ mothers, 58 children Children age: 4–18 |
New York, US | Cross sectional survey |
Children awareness rate 97% Timing of disclosure Children’s age (Mean = 7) Disclosure approach 75% were informed by mothers Scope of disclosure 68% were informed about potential death, 57% about maternal HIV/ AIDS, 43% about illness Content of disclosure 34% were asked to keep disclosure secret Children outcomes Children requested to keep disclosure secret tended to have higher CBCL problem behavior score (P < 0.05). Disclosure was not associated with children’s adaptive functioning |
Demattero et al. (2002) | [5] | 51 adults, 54 children from 44 HIV affected families from multi-sites Children age: (over 83%) 5–19 |
Canada | Cross sectional survey |
Disclosure rate N/A
Reactions Emotional reaction (47%), no emotional reaction (43%) (parents’ report); sad or upset (87%) (children’s report) Disclosure approach Disclosing at home (69%); disclosing all at once (47%), gradually (44%); topic could be initiated by children/children’s questions (86%) Preparation before disclosure: Talking with people trusted (78%), waiting for improved health of infected parent (71%), prayer (50%), talking with professionals (49%) |
Shaffer et al. (2001) | [31] | 99 HIV+ inner city African American mothers, 99 children Children age: 6–11 |
New Orleans, US | Longitudinal study, 30-34 months time span |
Children awareness rate 32% Timing of disclosure Children’s age (Mean = 9.59, SD = 2.46) Predictors of disclosure Older children Children outcomes Disclosure was associated with increased externalizing behaviors (P < 0.01, mothers reported), increased knowledge of HIV/AIDS (P < 0.05, children reported). Family outcomes Disclosure was associated with declined mother–child relationship quality (P < 0.05, mothers reported). |
Murphy et al. (2001) | [30] | 135 HIV+ mothers, 135 children Children age: 6–11 |
Los Angeles, US | Cross sectional survey |
Disclosure rate 30% Children awareness rate 51% Disclosure approach 83% informed by mothers, 7% by others Scope of the disclosure 13% informed about potential death of AIDS, 16% AIDS, 38% HIV+, 4% chronically ill, 29% ill Reasons for non-disclosure Children were too young to understand (85%), children might tell others (42%), did not know how to tell (40%), children might have problem behaviors (21%), children might be angry and withdraw (18%), children might be afraid of parents (17%), and children might lose respect for parents (9%) Parents outcomes Disclosure was associated with higher scores on personal/private feelings (in social support scale) (P = 0.008). Children outcomes Disclosure was associated with lower levels of aggressiveness (P = 0.03), negative self-esteem (P = 0.04) |
Armistead et al. (2001) | [35] | 87 HIV+ African American mothers, 87 children Children age: 6–11 |
New Orleans, US | Cross sectional survey |
Disclosure rate 30% Timing of disclosure Time since diagnosis (Mean = 13.63 months, SD = 19.39) Predictors of disclosure Lower income, being more bothered by physical symptoms, being older children, being girls Reactions Supportive (30.4%), accepted (17.4%), fearful (17.4%), disappointed (8.7%), angry (8.7%), rejected (4.3%), no emotional reaction (13.5%) Children outcomes Disclosure was not associated with internalizing or externalizing behaviors. |
Pilowsky et al. (2000) | [15] | 29 HIV+ mothers Children age: 4–17 |
New York, US | Cross sectional survey |
Disclosure rate 41% Reasons for disclosure Right thing to do (100%), made arrangements for children’s future (92%), children already found out (75%), children would find out sooner (75%), could not bear to keep secrets (58%) Reasons for non-disclosure Concerns about talking to children about death (77%), children might not understand (73%), children might be worried (77%), children might ask reasons of infection (45%), children might tell others (41%), and concerns about losing respect from children (36%) |
Thorne et al. (2000) | [4] | 121 parents, (92% HIV?), 50 alternative caregivers, 226 children (62% HIV?) from ten pediatric centers Children age: ≤19, with 55% ≤6 |
7 European countries (German, Italy, The Netherlands, Portugal, Spain, Switzerland, and the UK) | Cross sectional survey |
Disclosure rate 11% Timing of disclosure Children’s age (Mean = 10, Range = 5-12) Predictors of disclosure Older children (P < 0.02), longer time since diagnosis (7.0 vs. 6.1 years, P-value was not reported) |
Simoni et al. (2000) | [21] | 188 HIV+ mothers, 267 children Children age: 1–19 |
New York, US | Cross sectional survey |
Disclosure rate 50% Scope of disclosure Disclosing HIV/AIDS (50%), potential death (6%), illness (6%), something else (1%). Predictors of disclosure Older children, no association with ethnicity, stage of illness Parents outcomes Disclosure was not associated with psychological well-being or obtaining more social support resources. |
Wiener et al. (1998) | [37] | 17 HIV+ parents, 17 children recruited in National Cancer Institute Children age: 5–18 |
US | Cross sectional survey |
Disclosure rate 41% Timing of disclosure Children’s age (Mean = 9.3), Time since diagnosis (Mean = 2.5 years) Reasons for disclosure In case of children’s hearing from others, being prepared for maternal death, opposing to family secrets, children’s asking about HIV/AIDS Reasons for non-disclosure Psychological harms to children, children might not understand, preserved childhood, feared children’s rejection Reactions Started asking questions, scared, or no emotional reaction Parents outcomes 57% (4/7) relieved, 29% (2/7) overwhelmed, 14%(1/7) nervous after disclosure, disclosure was associated with lower parental depression (P = 0.12) Family outcomes Disclosure was associated with higher family cohesion score (P = 0.08), not with social support satisfaction, or children’s self-perceived competence. |
Rotheram-Borus et al. (1997) | [41] | 151 HIV+ parents, 171 children Children age: 12–18 |
New York, US | Longitudinal study, 3-6 months time span |
Disclosure rate 44% Scope of disclosure 5% informed about potential death, <5% AIDS, 74% informed HIV+ , <10% ills Predictors of disclosure Older children (P < 0.001) Children outcomes Children disclosed: less likely to be sexually abstinent (48.5% vs. 67.6%, P = 0.039), more unprotected sexual risk acts (baseline, P < 0.03), more likely to smoke (baseline, P < 0.005; follow-up, P = 0.016), higher weighted substance use index (baseline, P = 0.003; follow-up, P = 0.004), more symptoms of emotional distress (follow-up, P = 0.01), higher level of distress (follow-up, P = 0.005) |
Armistead et al. (1997) | [58] | 67 HIV+ fathers, 67 mothers, 67 children from 17 hemophilia treatment centers Children age: 3–17 |
US | Cross sectional survey |
Disclosure rate 45% Predictors of disclosure Older children, Caucasian families, in the symptomatic-AIDS stage of father Children outcomes Disclosure was not associated with child depression, externalizing problems or lower GPA. |
Not all the studies used independent samples
Main findings include disclosure rate, timing of the disclosure, approach, scope and content of disclosure, reasons for disclosure/non-disclosure, predictors of disclosure, reactions to disclosure, and outcomes of disclosure on children, parents and family (e.g., psychological well-being, family relationship). Available data regarding these findings from each study were presented in the column
This study used a sub-sample from a larger national representative sample of the HIV Cost and Services Utilization Study (HCSUS). The main variables were drawn from follow-up survey (1997–1998), but some demographic variables were collected from baseline (1996–1997)
This study was a part of a comprehensive study combining quantitative and qualitative methods. The quantitative data is presented in this table