Table 2.

Summaries of qualitative studies

Study	Ref #	Sample description and study design	Location	Main findings
Kennedy et al. (2010)	[25]	Semi-structured interviews in 33 HIV+ parents, 27 minor children, 19 adult children,15 caregiversa Children age: (minor children) 9–17, adult children (≥18)	US	Disclosure rate N/A (Only children who had known parental HIV serostatus were recruited in the study) Disclosure approach Unplanned disclosure was common. Children questioned parental health and medication. They guessed or indirectly learned of parental HIV infection. Reactions Many families described positive results of disclosure (emotional support).
Nam et al. (2009)	[28]	In-depth interviews in 21 HIV+ parents in ART care centers Children age: 5–18	Botswana	Children awareness rate 29% were told, 33% thought to have guessed The content of disclosure Parents did not talk about HIV-related sexual and reproductive health topics to children. Reasons for disclosure Children were HIV-positive, the rest of the family had already knew, parents were sick Reasons for non-disclosure Children were too young, didnot know how to tell, children might feel pain, others might know, children might experience stigma Professional support Parents required support in managing age-appropriate disclosure to children.
Thomas et al. (2009)	[39]	In-depth interviews in 60 HIV+ mothers Children age: (over 40%)≥ 10	Chennai, India	Disclosure rate N/A Disclosure timing 15 years old should be an appropriate age for parental HIV disclosure. Reasons for disclosure Getting support from children Reasons for non-disclosure Children might experience discrimination, children might tell others, possible negative effects on admission to schools and school performance
Asander et al. (2009)	[34]	Semi-structured interviews in 47 HIV+ African immigrant parents from 41 families, 87 children Children age: ≤18	Stockholm, Sweden	Disclosure rate 12% (5/41) Children awareness rate 9% (8/87) Timing of the disclosure Children’s age (Median = 11, Range = 8–16) Predictors of disclosure Only mothers disclosed to children, most were single, had no relatives in Sweden. Disclosure was not associated with age, clinical status, ARV, religion, education or knowledge of HIV.
Rwemisisi et al. (2007)	[26]	In-depth interviews in ten HIV+ parents, directors and key informants interviews in two counselors from each of five NGO Children age: (minor children) 4–17, (adult children) 18–36	Uganda	Disclosure rate 50% Timing of the disclosure Children’s age (Median age = 18, Range = 14–22) Reasons for disclosure Getting support from children Reasons for non-disclosure Uncertainty about appropriate age for disclosure, lack of perceived benefits for child, emotional pain Professional support Counselors confirmed lack of policy and training guidelines on parent–child disclosure, and inconsistent advice.
Xu et al. (2007)	[32]	Semi-structured interviews in 16 children, 16 caregivers and five key informants in community Children age: 8–17	Yunnan, China	Children’s awareness rate 18.8% (3/16) Reasons for disclosure Children heard from gossip and kept asking for the truth; children had guessed it by observing parental medication The content of disclosure Some grandparents would rather tell children their parents died from drug overdose than AIDS. Reasons for non-disclosure Children were too young to understand, parents did not know how to explain HIV or answer questions about HIV, children might tell others, protected children from unpleasant events and avoid psychological distress Reactions Children were concerned about parental health and kept parents from any heavy work. Children outcomes No obvious psychological distress
Murphy (2006)	[55]	In-depth interviews in 47 HIV+ mothers who disclosed to childrenb Children age: 6–11	Los Angeles, US	Disclosure rate N/A Reactions Anxiety about maternal health, fear of maternal death and worry about stigma Anxiety decreased over time among the majority of children, and they appeared to adjust well to disclosure
Woodring et al. (2005)	[46]	Semi-structured interviews in nine adolescents Children age: 11–17	New York, US	Disclosure rate N/A Disclosure approach Unplanned disclosure was accompanied by multiple disclosures. It was common that parents disclosed to youngest child last. Children outcomes Many struggled with desire to disclose to others (to get support, educate others, normalize the illness) and fear of disclosure to friends and at school (stigma, rejection, secondary disclosure) and how and when to disclose.
Vallerand et al. (2005)	[50]	Semi-structured interviews in 35 HIV+ mothers, 19 children Children age: 10–18	Detroit, US	Disclosure rate N/A Reasons for disclosure Children were developmentally ready, protected children from HIV/AIDS, feared forced disclosure, health status declined Reasons for non-disclosure Children might not be able to understand, feared stigma Reactions Mothers often described disclosure event in a positive way, while children recalled shock and fear. 52% of mothers reported positive (closer and stronger) relationship with their children after disclosure, while some mothers and children reported negative impacts (emotional reactions, fears about uncertainty, negative behaviors, and forced secrecy). Negative reactions were common for forced disclosure.
Nostlinger et al. (2004)	[24]	Qualitative study in 13 African caregiversc Children age: ≤17	Belgium	Disclosure rate N/A Reasons for non-disclosure Emotionally disturbing for children (67%), stigma (59%), children being too young (41%) Professional support 69% (9/13) of parents required professional support.
Murphy et al. (2003)	[38]	In-depth interviews in 47 HIV+ mothers who disclosed to childrenb Children age: 6–11	Los Angeles, US	Disclosure rate N/A Timing of the disclosure Preferred children’s age (Range = 6–10) Disclosure approach The majority of mothers (68%) did not regret disclosing. They recommended self-preparation with well-planned disclosure approach and content before disclosure and emotion control during disclosure. It was also important to answer children’s questions, provide emotional support, and introduce children to other healthy HIV+ mothers.
Murphy et al. (2002)	[56]	In-depth interviews in 47 HIV+ mothers who disclosed to children, 47 childrenb Children age: 6–11	Los Angeles, US	Disclosure rate N/A The content of disclosure Most mothers explicitly requested children not to tell others because they feared stigma. Reaction The majority of children did not disclose to others or want others to know because they hoped to protect mothers. Children outcomes Children expressed concerns about their friends finding out, and fears of stigma, but the burden of keeping the secret was not a stressor for some of them.
Schrimshaw and Siegel (2002)	[44]	In-depth interviews in 45 HIV+ mothersd Children age: ≤25	New York, US	Disclosure rate 66% Reasons for disclosure Educate children about HIV (40%), children should be disclosed directly by mothers (20%), children should be disclosed before mother’s poor health status (20%), parents should be honest with children (33%) Reasons for non-disclosure Children were too young (50%), children might have emotional burden (27%), feared rejection (20%), children might fear losing mother (20%), wanting children to recover from previous losses (17%) The content of disclosure Most mothers did not discuss the future course of illness, only a few gave explicit instruction about who to tell and who not to tell about the disease. Reactions Sadness, concern, disbelief, but reactions did not last long Most mothers reported no change in children’s school performance, behavior at home or sleep patterns. Some reported children’s acting more responsibly, independently, and closer mother–child (particularly daughter) relationship.
Demattero et al. (2002)	[5]	Qualitative study in 51 adults, 54 children from 44 HIV-affected families from multi-sites Children age: (over 83%) 5–19	Canada	Disclosure rate 31% Timing of the disclosure Age at which children really understood HIV (children’s report) was 11 year old. Disclosure approach Sometimes disclosures were planned in the context of a special meal or favorite family activity. Sometimes disclosures occurred in the context of family argument and after a parent had been drinking. Reasons for non-disclosure Protected children’s normal childhood, children might not be able to understand HIV
Dane (2002)	[27]	Semi-structures interview in 26 HIV+ women Children age: 3–19	Thailand	Disclosure rate 35% (9/26) Timing of the disclosure Children’s age (Mean = 13.3, Preferred = 10) The content of disclosure All the mothers requested children not to discuss maternal HIV infection at school to protect them from stigma. Reasons for disclosure Protected children from HIV/AIDS Reasons for non-disclosure Children were too young, mothers feared the consequences of disclosure, disclosure would hurt children Reactions Worried, concerned, confused, scared and tearful, closer mother-child relationship

^aThis study used a sub-sample from a larger national representative sample of the HCSUS. The baseline of HCSUS was conducted in 1996–1997, but this study collected qualitative data in 2004–2005

^bThese studies used the same data, but presented as independent studies due to different research topics

^cThis study was a part of a comprehensive study combining quantitative and qualitative methods. The qualitative data is presented in this table

^dThis study used a sub-sample from a larger study about HIV+ mothers in New York City (N = 146)