Protective Parenting Practices Among Mothers living with HIV and their Adolescent Children: A Qualitative Study

Abstract

Growing up with a mother living with HIV (MLH) is a unique experience for adolescents. Children in these families often thrive; however, many also exhibit behavioral health problems including HIV risk behaviors. Under a lens of youth risk reduction, we examined the role of protective parenting practices in their lives including parent-child communication about sex, parent-child relationship quality, parental monitoring, and mother-to-child HIV disclosure. For this exploratory study, we conducted four focus groups with MLH (n = 15) and 13 in-depth interviews with HIV-negative adolescent children of MLH. Participants were primarily African American and recruited from clinics and non-profit organizations in the southeastern United States. A thematic analysis of focus group and in-depth interview data revealed that mothers’ prior experiences with HIV and HIV-related risks often underlie their strengths as parents – for example, confidence in their ability to discuss sexual risk topics with their children as well as enhanced motivation to monitor their children’s whereabouts and exposure to risky environments. Nonetheless, many MLH face challenges, including problems with mother-to-child HIV disclosure and relationship disruptions, which likely hinder protective parenting. Implications of our findings include specific recommendations for adapting effective and culturally-informed prevention interventions for families affected by maternal HIV infection.

Introduction

Adolescent children of mothers living with HIV (MLH) may experience adjustment issues due to their mother’s illness (Armistead, Marelich, Schulte, Gilbert, & Murphy, 2019). Moreover, they could be vulnerable to HIV infection themselves via intergenerational transmission of risk factors (Cluver et al., 2013). MLH are positioned to reduce risk and promote positive adjustment via protective parenting practices (Widman, Choukas-Bradley, Noar, Nesi, & Garrett, 2016); however, with rare exceptions (e.g., Rotheram-Borus, Stein, & Rice, 2014), interventions to improve these practices have not been designed for MLH.

Research examining protective parenting practices among MLH is mixed including whether they have an enhanced ability to communicate with their teens about sexual risks (Cederbaum, 2012; Cederbaum, Hutchinson, Duan, & Jemmott, 2013). HIV also influences parent-child relationships differently. Cederbaum and colleagues (2013) found a negative association between maternal HIV infection and mother-daughter relationship satisfaction. Others have found high family cohesion and low conflict to be more prevalent among MLH versus mothers not living with HIV (Rotheram-Borus, Rice, Comulada, Best, & Li, 2012). Mother-to-child HIV disclosure, an additional protective parenting practice, is also important to consider, as it may affect family relationships and child well-being (Armistead et al., 2018).

The current study was part of an investigation to adapt a youth HIV prevention intervention for MLH and their HIV-negative children (Tarantino & Armistead, 2016). We now aim to elucidate prior findings by examining how MLH and their children experience protective parenting practices.

Method

Procedures

This study was approved by a university Institutional Review Board. Recruitment occurred at urban HIV community clinics and non-profit organizations. MLH with a child (ages 10 to 15) were eligible. Inclusion criteria also included mother and child consent and assent, respectively. HIV-positive children were excluded. Four two-hour focus groups with three to five MLH each were conducted at a psychology clinic. Adolescents completed a 45 to 60-minute in-depth interview. Interviews and focus groups were recorded and transcribed.

Instrumentation

Focus group and interview protocols focused on the underlying question: what is the role of protective parenting practices (i.e., healthy relationships, parent-child communication about sex, parental monitoring, and mother-to-child HIV disclosure) in your life? Specific questions included: (a) “Tell me about your relationship with your son/daughter (or mom);” (b) “How do you think being HIV positive affects how you talk about sex with your children;” (c) “How do you keep track of your kids”; (d) “What is it like being a mom (or having a mom) who is HIV-positive.”

Analysis Plan

Codes were generated, beginning with concepts from the interview guides, and revising to accommodate emergent constructs from the data. All data and assigned codes were entered into NVivo software. A theoretical thematic analysis (Braun & Clarke, 2006), beginning with protective parenting practices, was used to analyze the data. Subthemes were identified by grouping codes, connecting subthemes to protective parenting practice themes, and creating a thematic map (Figure 1). Illustrative quotes are provided from adolescent interviews by age and gender (A#) and mothers in focus groups (FG#).

Figure 1.

Thematic Map

Results

Participants

Fourteen mothers and one grandmother participated (Table 1). Adolescents included seven girls and six boys (M age = 13 years, SD = 1.98). All children were identified as African American/Black, and none were identified as Hispanic/Latino. Adolescents’ mean grade attainment = 7.69 (SD = 1.80.).

Table 1.

Characteristics of mothers living with HIV (N = 15)

	Mean(SD) or n(%)
Age	41.33 (SD 8.52)
Race
African American or Black	14 (93)
White	1 (7)
Employed
Yes	2 (14)
No	13 (86)
Education
Less than high school	2 (13)
High school or equivalent	2 (13)
Some college	7 (47)
College degree	4 (27)
Monthly household income ($)
0–199	4 (27)
200–499	1 (7)
500–999	5 (33)
1000–1999	4 (27)
2000–2999	1 (7)
Relationship status
Single, never married	8 (53)
Separated or divorced	3 (20)
In relationship, living with partner	1 (7)
In relationship, not living with partner	1 (7)
Other	1 (7)
Did not answer	1 (7)
History of AIDS diagnosis
Yes	9 (60)
No	6 (40)
Years living with HIV	14.27 (9.18)
Age of Child When Told HIV Status	10.85 (2.38)
Years Child Has Known HIV Status	2.62 (2.05)

Theme 1: Parent-Child Communication about Sex

Mothers’ attitudinal barriers to communication.

Most mothers had positive attitudes towards parent-child communication about sex, though a few voiced concerns (e.g., talking about sex leads to sex; Table 2 - Quote 1a [T2–1a]). Others said this conversation should not occur until a child is developmentally ready. Another belief, that sex is dangerous, perhaps limited discussions to this focus (T2–1b). Finally, some mothers took punitive or dismissive attitudes towards sex, as indicated by a daughter (T2–1c).

Table 2.

Summary of themes and subthemes related to the protective parenting practices of mothers living with HIV

Theme	Subtheme	Illustrative Quotes
Communication About Sex	Maternal Attitudinal Barriers	1a. I don’t really want to be graphic to make it seem, because I’m teaching him this, I’m condoning it. But at the same time, I don’t want you to do it and then be clueless about it. So I don’t want to condone it but I want you to be safe if you do. (FG4; 32-year-old mother) 1b. Well [when] I talk to my daughter and her friends about sex I use scare tactics. And I’m not saying that it’s right but that’s what I use. I tell her about every disease that there is and I tell her none is small. All of them can cause you to be sterile. (FG4; 42-year-old mother) 1c. All she told me was like, “I know your body changing.” Like, ‘cause she told me that she don’t have a feeling. ‘Cause I told her that girls my age have the feeling to have sex. … and she was like, “I never had that feeling before.” Because she started having sex when she was 12, so I was like, “maybe cause you started too soon.” But I know I have a feeling, but I just don’t do it. I just take showers and stuff to get [rid of] it. Like, it’s a physical feeling, but she don’t understand. (A4; 15-year-old girl)
	Mom Comfort vs. Child Discomfort	2a. It’s not hard for me to talk to my daughter. I don’t go too far because she’s so young. I try to keep it age-appropriate with her. (FG2; 51-year-old mother) 2b. …for a female it’s hard for me to talk to my son about sex because I don’t just want to just talk to you about it. You know, “okay, lets make sure you have the right condom size. Let me make sure you’re putting it on correctly.” And, you know, he’s not going to want to show me all this. (FG4; 32-year-old mother)
	HIV as a Strength	3a. You know, but I’m glad that… I guess in a lot of ways, I’m glad that I got HIV. I can teach her, you know, how I wanted her to be instead of how she should be or how I was, you know, because I mean, well, I started having sex late… but it was like once I got a taste of it, that was it. (FG1; 59-year-old grandmother) 3b. I wanted them to know ‘cause I tell my son if you going be sexually active come to me. There are certain things that I can teach you. (FG3; 32-years-old)
	Influence of Relationship Quality	4a. I probably end up telling [about sex] when I’m ready… if we get closer. (A4; 15-year-old girl)
Relationship Quality	“Big Breaks”	5a. She just got all this anger and I asked her one day I said, “Are you mad at me for something? Tell me. Get it out.” And she couldn’t tell me. She said, “I just don’t wanna talk about. I just don’t wanna talk about it.” And she just, I mean, they’re just like holding this in and just like lashing out at everything, …just going wild. (FG3; 49-year-old mother) 5b. Interviewer: How do you think you could have a better relationship with your mom? Participant: I don’t know. I just don’t think it’s there. Interviewer: Do you think it’s the time that you guys had apart that’s… Participant: Affected me. I do. ‘Cause when she be like, “Give me a kiss on the cheek,” I be like, “No.” But she my momma so I don’t know why am I feeling that way. (A4; 15-year-old girl)
	Teens Want More	6a. Usually it’s kinda hard cause kids… they feel kinda like sometimes they’re not able to talk to their parents. And like their parents should kinda make them feel more comfortable with being able to talk to them and being open and like just being honest. (AI5; 15-year-old girl) 6b. If they [mothers] could try to change their ways too. Like they expect us to change. Like when my mom was messing up and stuff, I was like, you know, forget it. I’m making errors, I’m getting in trouble in school, so like, she’ll like pay more attention to me. (A1; 13-year-old girl)
	Influences of HIV Status	7a. We were always like really close ‘cause I was a single parent so it was just me, my son, and my daughter. But then… when I was at the hospital I realized I wasn’t going to be getting out any time soon and so you know my kids they were moved out of their schools. So everything kinda shifted for them. And then it was to the point where I really didn’t want them to come visit me at the hospital because I’m so used to them seeing me a certain type of way that I didn’t want them to see me with all the IV’s in and the machines in. …I couldn’t really interact with them so now we’re trying to rebuild the bond but I think I freaked them out. (FG4; 32-year-old mother)
Continuing the Disclosure Process	Impact of Initial Disclosure	8a. He gets attitude. Someone brought it to my attention. It’s like, “well, you know, you was in his life for 12 years on and off, maybe he don’t want to think about it ‘cause he’s so afraid that it might bring thoughts of him losing you.” But I don’t want him to think that way, you know…And I don’t want him to have to fear like that. And then recently you know he’s always been up under my mom, me, or my niece but he don’t hang out with his friends and he always just want to be right there watching me. And I’m so afraid it’s because of fear. (FG4; 49-year-old mother) 8b.…she was like ‘You know, I’m HIV positive.’ And she was like, ‘I probably don’t even have that much time to live.’ (A1; 13-year-old girl)
	Finding the Right Amount of Disclosure	9a. Well we talked about it a couple of days ago when she told me you guys were coming to talk to me… She was like, “they are going to ask you some questions like about what HIV is and what it does to you, and how you can get it and stuff.” I was like, “okay, well just tell me what the stuff is so I can at least be productive.” ‘Cause I didn’t know what none of it was. (A11; 11-year-old girl)
	Comfort Prior to Disclosure	10a. I don’t think [she has] a problem talking about it, but if she did, and I thought that she did, then I wouldn’t be able to talk about it. (A11; 11-year-old) 10b. I mean it’s really up to that teen if he wants to talk to his mom about it. I mean I think they should have that conversation. I mean if he really doesn’t feel comfortable having that conversation, I think [the mother] really shouldn’t bring it up or even have the talk with him ‘cause it’s just going to make him more distant from you. He’s not gonna wanna even like be in the same room as you if you want to keep bringing it up. (A7; 15-year-old boy)
	Protective Effect on Youth Risk Behavior	11a. It kinda makes me cautious about the things I do… and how much I get tested and stuff like that. And it makes me more cautious of like sex and stuff like that. And it just kinda makes me more knowledgeable about what’s going on with her and like, like everything that she goes through and stuff like that. And then, it makes me, you know, I don’t know, it makes me more cautious about what I do, so I won’t do the same thing. (A5; 15-year-old girl)
Parental Monitoring	Influence of Maternal Early Life Experiences	12a. I keep her close. You know, because I know, I grew up with ten brothers. And I left home at 19…to go to college. And I’ve been on my own. I’m 51 now. I’ve been on my own from 19 to now, and I’ve had a lot of experiences, you know, and I just keep her close to me. You know, because she can’t make decisions like that this early in life whereas a teenager can, you know, [know] right from wrong. (FG2; 51-year-old mother) 12b. I rebelled. I was hot. I was out there with boys. I did everything I could to piss my mom off. I put myself on birth control at 15… I had made up my mind that I was going lose my virginity. (FG3; 29-year-old mother) 12c. You’re going start to get the feelings… I’m not going pretend like it doesn’t. So she’s going on birth control. But I feel like as far as freedom, I think roughly a 14-, 15-year-old should have a little leeway far as, like you drop them off at the movies or something. But for pre-teens no, you’re chaperone, like, you’re going chaperone. (FG3; 29-year-old mother)

Mother comfort versus child discomfort.

Mothers often reflected feeling comfortable with sex communication (T2–2a). Talking with sons, however, could be difficult (T2–2b). Unlike MLH, however, many teens, particularly boys, felt uncomfortable. One 15-year-old boy indicated, however, “I wouldn’t ask her but like you know if it come up… [he would talk about it]” (A10). Older girls were also an exception. A 15-year-old daughter reported, “I don’t really mind ‘cause I feel like I pretty much can talk to her about most of everything.” (A15)

HIV as a strength.

MLH were often motivated by HIV-related experiences to discuss sex topics with their children (T2–3a). A 46-year-old mother also stated, “That’s why when I told her [my HIV status], I told her all the different ways … you can contract HIV.” (FG2) Another mother, who was asked why she disclosed her status to her son, responded similarly (T2–3b).

Influence of relationship quality.

A few adolescents indicated that sex-related conversations would be easier if they were closer to their mothers (T2–4a). An 11-year-old boy also said he could talk about it, “if… we like bonded more.” (A9)

Theme 2: Parent-Child Relationship Quality

“Big breaks.”

About half of mothers reported prior substance use problems. These problems often led to parent-child separation and relationship disruptions. One mother, who was in prison, described mending the relationship (T2–5a). Due to separations, adolescents sometimes reported anger, mistrust, or a loss closeness towards their mothers (T2–5b).

Teens want more.

Youth said mothers should spend more time doing fun activities and communicating openly with them (T2–6a). Another suggestion, parents modeling appropriate behavior, was voiced by a girl who had witnessed her mother’s substance use (T2–6b).

Influence of HIV status.

A common reaction to HIV disclosure was children caring for their mothers (e.g., providing medication reminders). Some mothers believed that this brought them closer to their children. One mother who was recently diagnosed, however, had a different experience (T2–7a).

Theme 3: Continuing the Disclosure Process

The impact of initial disclosure.

Mothers often struggled with initial mother-to-child HIV disclosure. However, no mother expressed regret for disclosing. They said their children reacted differently, with some “brushing it off” and others becoming upset. Previous separations seemed to influence how children reacted (T2–8a).

Some teens confirmed their mothers’ report by saying that learning their mother’s status was “no big deal.” Others said they initially felt sad, angry, or shocked. Many continued worrying about their mother’s health. How the disclosure event occurred likely influenced their degree of worry (T2–8b).

Finding the right amount of disclosure.

MLH continued disclosing at different rates. A 59-year-old grandmother responded, “Oh, I talk to them about it all the time. Because she’s coming up on that promiscuous age.” (FG1) Some disclosed less, believing their child had no more questions or because it caused painful memories. Differences emerged in disclosure details. Unlike other mothers, one decided not to disclose that contraction occurred via sex, fearing her child would be angry at his father. Other reasons they disclosed fewer details included: child was not developmentally ready; not burdening the child; and keeping information private.

Some adolescents said they rarely discussed their mothers’ HIV status following the initial disclosure. A daughter described not being aware of her mother’s HIV-related experiences when asked how frequently they discussed the issue (T2–9a).

Comfort prior to disclosure.

Many teens were open to talking about their mother’s HIV status. However, some noted that if they felt uncomfortable or perceived their mother to feel uncomfortable with the topic, this would create a barrier to communication (T2–10a and T2–10b).

Protective effect on adolescent risk behavior.

A few older daughters indicated that because they were aware of their mother’s status, they felt a greater need to protect themselves from HIV (T2–11a).

Theme 4: Parental Monitoring

Many mothers reported an intense desire to protect their children from community risks through a high degree of parental monitoring. Youth typically confirmed their mothers’ reports.

Influence of mothers’ early life experiences.

Mothers often reflected on early life experiences when considering parental monitoring (T2–12a). Another mother feared that her 10-year-old daughter would engage in sexual risk behaviors, like when the mother was a teen (T2–12b), and this prompted monitoring (T2–12c).

Discussion

Our study examined protective parenting practices among MLH and their children. Mothers’ life experiences often provided the impetus for communication about adolescent risk topics and parental monitoring. Maintaining strong family relationships, however, was a challenge for some participants due to periods of parent-child separation.

We also examined mother-to-child HIV disclosure. For some, disclosure was a one-time event. This is a missed opportunity to share with youth HIV prevention and risk reduction-related information (Howell, 2019) and enhance child adjustment (Armistead et al., 2018). Interventions should thus focus on helping MLH continue the disclosure process (e.g., Murphy, Armistead, Payne, Marelich, & Herbeck, 2017) throughout adolescent development.

Study limitations are noted. Our sample was relatively small and consisted primarily of African Americans. We also included only early-to-middle adolescents, a period important for prevention efforts. Generalizability to other families affected by HIV is therefore limited.

Our study informs parent-based interventions for MLH. We recommend combining mothers’ motivation to communicate about sex and HIV-related experiences with strategies to make these conversations easier. Communication exercises could also address mother-adolescent relationship breaks (Diamond, Shahar, Sabo, & Tsvieli, 2016).