Introduction

In Canada, since the epidemic began, about 3000 children were born to HIV-positive mothers and at least 551 contracted HIV perinatally [1]. HIV poses singular challenges within the family household when the mother, as well as other members, carry the virus [2]. HIV is mostly hidden from others, including from family members, a reflection of internalized HIV-related stigma in the family [3–5]. Reasons given by parents for keeping the HIV status secret include protecting their child from the stigmatization they could face [6] and protecting themselves from feeling guilty for having transmitted the infection [3, 7]. The issue of HIV disclosure to youth with perinatally acquired HIV (PAHIV) has been widely studied. Overall, the literature shows three key moments upon first learning of one’s HIV status among youth with PAHIV and its relation to HIV stigma: secret, disclosure, and silence [3–10].

Secret

The first key moment refers to the period of time before the child is told of their HIV status. During this period, youth with PAHIV are unaware of their status as their parents/guardians keep the HIV infection secret [4, 7]. Medical teams respect the parents’ decision in this regard [7]. Youth become gradually conscious that they are different from their peers as they have medication to take, a medical follow-up and, for some, a precarious state of health [4, 6–9]. Some children live with the feeling that something is being hidden from them, that their questions are not being answered or that the answers provided are incomplete [4, 11]. For parents, revealing the HIV diagnosis to their child raises many concerns, including fears that the child will be angry with them or blame them [7, 8, 10, 12] or that they will ask how the parent contracted the virus [13, 14]. Many parents search for ways to protect their children from the social isolation and stigmatization that they could experience, and to prevent their children from revealing to others that they are infected with the virus [7, 8, 10, 14]. Diverse strategies, such as concealing the diagnosis with another illness (cold, asthma), were used by parents/guardians to preserve this secrecy [4, 6].

Disclosure

According to the World Health Organization guidelines [15], children should be informed about their condition before the age of twelve. According to Wiener et al.’s [6] meta-analysis, youth with PAHIV are told of their HIV diagnosis at 11 years old on average. The circumstances surrounding this revelation are hazy to youth with PAHIV and most are unable to provide a detailed description of the context in which they learned that they were HIV-positive [4, 8]. Nevertheless, some remembered feeling afraid, sad, worried or angry upon learning of their HIV status [4, 9, 16]. At this time, most realized that their vulnerable health, characterized by cumulative, inconsistent and inexplicable symptoms, had a cause (HIV) [4].

Silence

Some studies highlight the silence surrounding HIV infection among adolescents with PAHIV after their HIV status is disclosed to them [4, 5]. According to Trocmé [17], HIV interferes with the child’s relationship with their entourage, especially with their immediate family, as silence on the issue of HIV can exacerbate conflict, aggressiveness, and anxiety surrounding treatments and medical follow-up. Because of the dynamic of silence, youth do not always know how they contracted HIV, who knows about their HIV status, or with whom they can speak regarding these issues especially as adults tend to vaguely answer their questions [17, 18]. Children often grow up in an atmosphere of silence and inaccurate information likely to cause deleterious effects on psychosocial development [18]. Two qualitative studies have explored this specific issue of silence in families of youth with PAHIV.

Fielden et al. [5] conducted interviews with healthcare professionals who expressed that youth with PAHIV feel isolated, fearful, and ashamed upon learning that they are HIV-positive. According to Fielden et al. [5], silence interferes in at least three social worlds of youth with PaHIV: the world of the young person, of the family, and of the service provider. Once diagnosis is revealed, youth face the decision to disclose it to their significant relationships (friends, romantic and sexual partners). Most of them struggle with this decision, torn between the urge to get support and the fear of rejection. Many decide to keep their HIV status secret. In most cases, within the family, parents alone manage the disclosure of their children’s HIV diagnosis. Once revealed to their child, parents remain very reticent to raise the issue of HIV with them. According to healthcare professionals, parents are often overprotective; the adolescents’ activities and participation in support groups are limited, for fear that the youth will disclose their HIV status in those contexts. For these professionals, family can be a major barrier to the adolescents’ search for support beyond the immediate family [5]. Finally, Fielden et al. [5] also identified silence in healthcare services for young people living with HIV as a significant issue. Silence on HIV is used to create a safe space for youth, in particular when organizing support and recreational activities for youth. According to healthcare providers, silence in these contexts may have the dual function of protecting the youth from stigma, especially when integrating them with young people with other health conditions, and of “normalizing” the youth.

In another study [3], 29 youth with PAHIV took part in semi-structured interviews, during which they reported that discussions of HIV within their immediate family were generally limited to medication, which precluded any sharing about their emotional experience with HIV. This silence mainly served to maintain the family’s fragile balance, keeping the harmony between family members and imparting on youth with PAHIV a feeling of normalcy. Use of silence as a stigma management strategy seems more important among youth who lived with at least one of their biological parents compared to youth who lived in alternative care.

Since cases of vertical transmission of HIV are also marked by the stigma of having involuntarily transmitted the virus to one’s child, some authors advance that stigma and guilt may contribute to limiting family discussion of HIV [3, 7]. Indeed, youth living with at least one biological parent at this time appear more vulnerable to isolation, as they are unable to share their experience of HIV with family members [3, 5]. Therefore, HIV and internalized stigma interfere with the adolescents’ family relationships, and their ability to seek alternative sources of support. Silence as a stigma management strategy in family and institutionally based environments can then be expected to impact the life course of youth with PAHIV.

HIV-Stigma

Stigma is defined as an “attribute that is deeply discrediting,” reducing the bearer “from a whole and usual person to a tainted, discounted one” [19]. Alonzo and Reynolds [20] specify that stigma “radically changes the way individuals view themselves and are viewed as persons” (20, p. 304). From this perspective, an HIV-positive status can be considered a discreditable stigma in that it is invisible but capable of being revealed. Different strategies can be used to avoid being discredited on the basis of HIV status. Siegel, Lune and Meyer [21] position these strategies along a continuum ranging from reactive to proactive strategies. Secrecy and anonymity are examples of reactive strategies in which the HIV-positive person recognizes the social stigma of infection, anticipates the reactions it evokes, and chooses to avoid disclosing their status. At the other end of the continuum are proactive strategies in which individuals, cognizant of the social stigmatization of HIV, reject it and attempt to change the social perception of infection, for example, by speaking out publicly (e.g., sharing their experience, engaging in activism). In sum, individuals with a discreditable attribute must deftly manage information that could reveal their stigma and threaten their social integration.

As stigma is culturally laden, it can have profound implications for youth with PAHIV and their families [22]. Two studies examining HIV-stigma management in family settings found several family members to fear contamination by an infected relative through daily contact such as food preparation [23, 24]. To address these concerns, families implement two main strategies. One strategy involves educating relatives about HIV transmission, thereby reducing stigma. The other strategy consists in establishing rules that presumably reduce risk transmission (e.g., limiting the sharing of drinking glasses and silverware) which amplify stigma [24]. These studies demonstrate how HIV-stigma can create and maintain emotional and physical barriers between parents and their children, exemplified by a reorganization of daily interactions that take place between relatives, especially when blood, saliva and touching are involved. Such reorganization is likely to isolate both parents and children and to have a negative impact on family relationships.

Among youth with PAHIV, parents appear to play a predominant role in HIV stigma management [3–5]. Considering that few studies have taken into account the perspective of youth with PAHIV, this study aims to explore how family, secrecy and silence contribute to the adoption of stigma management strategies.

Method

This paper addresses data drawn from a larger qualitative study, which aimed to explore the meanings that youths with PAHIV attribute to HIV over time [25]. This larger study consists of 2 waves of data collection, three years apart, with the same participants. This article presents an analysis of data collected at the second wave which consists of a cross-sectional exploratory qualitative analysis that focuses specifically on stigma management strategies in the family context.

Sample and Procedures

Eighteen youth with PAHIV were included in this study. They were initially recruited at their pediatric HIV clinic in Montreal, Canada. The hospital’s ethics committee approved the project. Participant and parental consent required for minors was obtained. To participate, youth needed to speak French or English, live in the province of Quebec (Canada) and have knowledge of their diagnosis for at least six months prior to the study, to allow time for overcoming the initial shock of learning of their HIV status and for gaining some understanding of HIV. Recruitment was carried out by the same social worker who conducted the first interview. Interviews were done at the participant’s home [10], the hospital setting [7] or a child protection center [1]. A $20 CAD compensation was given for their time/transportation. Pseudonyms were chosen by the participants for anonymity.

Among those who did not participate twice, four had moved away, two did not return calls, two were not interested, and three officially withdrew from the study. Half of the boys (7/14) were lost to the follow-up between the two data collection waves. Among youth who did not participate in the second wave, eight of eleven had reached adulthood, and were now receiving their medical care at an adult center. Thus, girls, and younger individuals are overrepresented in this analysis. Finally, five out of eleven youth who did not participate twice self-identified as Caucasian.

Data Collection

Youth took part in a one-on-one semi-structured interview (17 in French, 1 in English) with an average duration of 90 min. The interview schedule covered family communication about HIV and changes occurring in the family since the first wave. For the purpose of this analysis, the word family encompasses family of origin (parents and siblings), extended family (grandparents, uncles, aunts, etc.), and adoption or foster care family. Other topics, such as peer and romantic relationships, health management and treatment, transition to adult care, as well as views on the future, were also addressed [25, 26]. The interviews were audio-recorded and transcribed verbatim. Observation notes (including the context and the proceedings of the interview, mental health diagnosis since baseline, direct observation), descriptive thumbnails, and a logbook were developed by both interviewer and first author to enrich the analysis.

Data Analysis

An exploratory content analysis [27, 28] was performed in three steps: (1) coding, which divides the material by theme using a mixed coding scheme based on literature-derived dimensions, and the study’s data; (2) categorizing, where all of the coded excerpts are summarized to represent the meaning of the participants’ discourse and to develop conceptual categories; and (3) linking, which consists in identifying links between the conceptual categories. To establish the relationship between the previously identified categories, we used the concepts of life course theory [29]. A life course is defined as a sequence of events taking place in different age groups and which is socially defined and ordered in time and in historical context [29]. The concept of trajectories allows the identification of transitions, which are characterized by periods of instability during which the role, status, or personal and social identity of the individual are changing. In addition, trajectories of individuals belonging to a primary group (family, friends) are interrelated, interdependent, and influence each other (linked lives concept). Finally, turning points represent events or situations that trigger a change considered significant in the individual’s trajectory. Turning point events or situations cause a trajectory to shift and differ from transitions which are part of the general model [30].

The analyses were performed in French and then translated for publication. The quality and accuracy of analyses were maintained by a variety of measures specific to qualitative research. For example, to foster distancing from the data, a logbook was kept throughout the entire study and analysis memos were written [31]. To ensure intercoder reliability, the entire analysis was periodically revised independently by three researchers throughout the categorization process, which also served to validate the results. Furthermore, the proposed analysis was also revised by key informants involved in the care of youth with PAHIV. The software Atlas.ti 5.0 was used to conduct data coding operations.

Results

Participants

At the time of their second interviews, participants were 17.5 years old on average. Over one-third were 18 years old (the age of majority in Quebec) and were being followed in an adult HIV clinic. Participants were mostly female (11/18) and identified as Haitian (6/18), African (5/18), having mixed ethnicity (5/18) or Caucasian (2/18). The majority of the sample lived with at least one biological parent, and half of participants had lost at least one parent to AIDS. The participants’ sociodemographic characteristics are presented in Table 1.

Table 1 Sociodemographic characteristics
Full size table

Consolidation and Weakening or Dissolution of Family Ties: Two Trajectories of HIV Stigma Management

The analysis led to the identification of two HIV stigma management trajectories, each of which is sensitive to the family environment. The first is characterized by the consolidation of family relationships, while the second is marked by the weakening or dissolution of family relationships.

Consolidating Family Ties Contributes to Solidarity in Stigma Management (n = 11)

The first trajectory involves a strengthening of the relationships between family members, favoring solidarity in adoption of HIV stigma management strategies, according to youth with PAHIV. Eleven participants reported this type of trajectory and most of them (10/11) were living with at least one member of their immediate or extended family (parent or other family member e.g., brother or aunt).

Transitioning to a Consolidation of Family Ties

Two main conditions were mentioned by youth as facilitating a transition to a consolidation of family ties:

  1. (1)

    Stability in the Family Environment Participants reported continuity in their family household and that the bond they shared with their family (of origin or foster) remained stable. In their view, this stability facilitated the establishment of favorable conditions for consolidating positive emotional ties (e.g., trust, attachment, intimacy) with their relatives.

I’m more comfortable talking with my mom. It’s not that I’m uncomfortable talking about it [HIV] with my dad, it’s just that I don’t see him that often. I’ll talk about it but not like I do with my mom. You know, I’ve lived with my mom all my life, so it’s easier to talk with my mom than with my dad (laughs). (Rachel, 14 years old).

There aren’t really any changes in my relationship with my parents. At least, I don’t think so. I didn’t notice. (Sebastien, 13 years old).

  1. (2)

    Getting More Freedom from Parents For some participants, especially older ones, becoming more autonomous, going out with friends and making their own decisions were mentioned as increasingly important. Some youth saw their parents as strict. In their view, their parents’ sociocultural values accord great importance to parental authority. For example, on the issue of going out with friends, differences between the values of host and home countries were expressed as sometimes giving rise to family conflict. In addition, some parents were described as restricting their children’s activities due to HIV and fears that they will stop taking their medication or will disclose their status to friends. Youth nevertheless saw in their parents the will to adapt, either to the host country values, or to their needs of independence as they grow up. In their opinion, the will to adapt fosters better conflict resolution. Some participants also mentioned that they were given greater autonomy as they got older, which helps limit conflict with their parents as lying is no longer necessary for them to obtain permission to go out. This ability to be honest can help improve family relationships as illustrated below.

She grew up in Haiti and me, in Canada. Sometimes she makes an effort to understand the mentality here in Canada. I notice that as I get older, she gives me more freedom (Bianca, 17 years old).

With my mother I think it’s better. She’s less strict. She gives me a little more freedom. Before, I couldn’t sleep over at other people’s places and I would find excuses to get there anyway. Now I can really tell her where I am (Mylène, 16 years old).

HIV Stigma Management Based on Solidarity

Two strategies of stigma management based on solidarity were identified. The first is based on complicity and sharing experiences, and the second involves mutual support.

  1. (1)

    Sharing Experiences and Complicity First, it seems that being able to share one’s experiences with a family member who is also infected with HIV, most often the mother, helps to create feelings of complicity and closeness. This strategy, including the possibility of having open discussions on HIV, appears to help infected family members face HIV stigma together and to share its burden. This could attenuate any discomfort in family interactions that arise from the disclosure of the youth’s diagnosis or was maintained through silence. Indeed, some participants mentioned that talking about their health and medication with their HIV-positive mother led to the development of a unique relationship with her. Keeping the secret of their HIV status together generated feelings of complicity; they alone knew about their condition and the adolescents, especially the girls, felt fortunate to have this special bond with their mother.

I would say it’s getting better and better. Before, it didn’t go as well with my mother. Then, a couple months ago, I talked to her about some of the things that didn’t go well when I was younger. Since then, she tries to get closer to me (Cassandra, 18 years old).

For my questions regarding the disease I always have a good connection with my family. I can always talk to them. My sister in-law is a nurse so, if I have questions, I can ask her. So, I’ve always been close to my brothers and my mother on that matter (Marie, 19 years old).

  1. (2)

    Mutual Support As for the second strategy, some participants spoke of the mutually supportive relationship that they built with their HIV-positive mother; they reminded each other to take their medication and took care of each other when they were sick. Sharing the same health condition and treatment seemed to lessen the burden of HIV infection’s daily management and to help strengthen family relationships. Knowing they are not alone in living with HIV, and having someone to talk to and give and receive support from, seems to attenuate the discomfort between youth with PAHIV and their mothers.

We talk more and more often now, because before I didn’t talk much, not really. Now it’s better. I know we are in the same situation. Sometimes we’re at the table and we go to the washroom to take the medication. Sometimes we talk. Since we’re taking the same medication, it creates a sort of complicity (Cindy, 17 years old).

Yeah, we talk about it. She takes her pills too. She looks at me when I take them as much as I look at her. We take them together (laughs). And that’s it, we cook together, we do everything together (Marie, 19 years old).

And, at the same time, I didn’t know how to help her, since I was younger. But now, she’s doing much better. And when she’s having trouble taking the medication, well now, since I’m older, I know how to help her, how to like, recognize the first symptoms to tell her that she should start taking her medication. I try to help her as much as I can. When it’s time to take the pills, because she doesn’t want to think about it, I just tell her and I help her, and that’s it” (Rachel, 14 years old).

Weakening or Dissolving Family Ties Contribute to a Solitary Stigma Management Strategy (n = 7)

A second trajectory is characterized by a weakening or dissolution of family ties, which led youth to manage HIV stigma alone. Seven participants experienced changes in family structure and living conditions in the recent years. One participant was placed in a youth protection center, three changed foster homes in which they were since childhood, one girl was living with her sister after her mother died, and another girl had a child and resided with her partner. Furthermore, three girls were diagnosed with mental health conditions (e.g., major depression). Overall, youth appear to have faced significant upheaval in their home lives and mental health. Moreover, most participants (5/7) lost at least one parent, all to AIDS-related complications. In most cases, weakening or dissolution of family ties coincides with transition from pediatric to adult health services.

Turning Point Toward the Weakening or Dissolution of Family Ties

For some participants (3/7), the relationships with their immediate or extended family dissolved. For other participants, family ties were weakened through emotional distancing from family members. Two main conditions were reported as contributing to the weakening or dissolution of family ties:

  1. (1)

    Significant Events Contributing to a Sense of Loneliness In the years surrounding their participation in this study, many significant events occurred that forced most of these youth to reorganize their daily lives without the support of their immediate family. While these events differ from one participant to another (e.g., placement in a youth protection centre, death in the family, rejection from the extended family, sexual abuse in the family, running away), they mark both a break in their family ties and with their social environment (e.g., change of school, loss of friends). For example, Naïka, whose parents both passed away, now lives with her older sister, who is HIV-negative. She feels that she cannot share her experience with HIV, her fears, nor her sadness with her sister, as she thinks she will not understand. In addition, their extended family rejects them both, having learned of their mother’s HIV-positive status upon her death.

My mom passed away last year. My dad’s family wants nothing to do with me. And ever since my mom passed away, her side of the family wants nothing to do with me either. And like, now, there’s just my sister and me [. . .] She knows what I’m going through, but I’m not comfortable talking to her about all of it [living with HIV]. She just says like: “Ah! Naïka, you don’t take your medication anymore?” and then I say: “Ah! I don’t want to” and it stops there (Naïka, 19 years old).

  1. (2)

    Sense of Injustice Some participants expressed feelings of injustice and helplessness towards their living conditions and/or their HIV infection. For example, one girl did not understand why she was placed in a youth protection center, mentioning that she did not deserve it.

I would really like it if all of the Youth Center tormenting was over in my life. Forever banished. I don’t want nothing to do with it. Because I never wanted to go back, but they forced me. I didn’t do anything to go back, and I didn’t want to go back. I didn’t call them to come back. I didn’t write to anyone to go back. I didn’t ask to go back and I didn’t do anything wrong to make me go back. They told me that my grandmother asked for a 30-day rest. I didn’t do anything to be here. I didn’t run away. I didn’t call the cops. I didn’t tell my grandmother to bring me to the Center. I didn’t ask anybody to bring me back (Pricilly, 17 years old).

For other youth, the sense of injustice was expressed with anger towards their parents, not for having transmitted HIV to them but for having engaged in behavior they deemed bad, such as injection drug use or other suspected “sins”.

God punishes up to 3–4 generations. All these curses are due to my parents’ sins (Christopher, 21 years old).

I don’t talk to her. To my mom. I’m done with my mom. We [Katarina and her sister] cut the cord with my mom [because of the drug use] (Katarina, 16 years old).

Solitary HIV Stigma Management

In contrast with participants engaged in the consolidation trajectory, youth experiencing the weakening or dissolution of family ties trajectory reported having no one in their home environment with whom to share their experience with HIV infection, and by proxy, no one with whom to identify. The only stigma management strategy we identified among them consists in self-imposed silence and isolation. Indeed, youth indicated that their exchanges with parents/guardians were superficial and limited to topics of routine daily life. In some cases, youth claimed that parents/guardians refused to talk about HIV, while in other cases, they reported actively choosing to remain silent on HIV. These adolescents mentioned feeling misunderstood by family members, and feeling unable to share their concerns, ask questions, or express their needs.

I don’t want to tell any of this to my mom because she worries too much. I don’t want to because she’s already under a lot of stress. My dad is also really stressed and has a lot of pressure and I don’t want to burden them and stress them out even more. I know that families need each other to help each other, but I only have my parents here. If I talk about it [HIV] with my mom, she’s gonna be like: “Oh! Why do you always talk about this?” Because, it bothers her a lot more,’cause she doesn’t want to hear about it. She doesn’t want to hear the word. She doesn’t want to hear that word again she just: “Hey, you know I deal with it. I threw it in the trash. It’s gone.” Oh, but it’s still there, you know. She doesn’t want to know, so that’s why I don’t want to worry her. (Lilo, 18 years old).

I try to talk to my grandmother, but those people, where they come from, they’re too strict. I try to tell her gently that some things are not good, but when I say so she gets upset. She doesn’t understand I’m trying to talk to her. It’s hard to talk to somebody that wants nothing to do with it. (Pricilly, 17 years old).

For some of youth [4], isolation appeared exacerbated by being alone in living with HIV in their home environment. Their treatment, medical follow-up, and symptoms or side effects, are all reminders of their difference from others, and emphasize their identity as a stigmatized person.

I live in a foster family, it’s not great and that’s why I’m eager to be 18 years old. When I get 17, I’ll go to court to get to 18 [to be considered major]. Because I can’t live in a foster family. You never feel at home. It’s no fun. And like, when you take your medication and everyone tells you “You gotta take your medication”. It’s not nice. (Katarina, 16 years old).

Participants who reported this solitary trajectory felt that the support they received was centered on their daily medical management of HIV, which either did not meet their needs or conflicted with their religious beliefs (i.e. treatment is not recommended in their religion). Others felt abandoned by their parent/guardian. Under these conditions, they mentioned preferring to manage their HIV infection alone, which appeared to intensify feelings of stigmatization.

Well, not really. I talked seriously about it [new religious affiliation] with them [parents] just once. I think I talked about it maybe like 5 times but not seriously and after that I just forgot about it and I continued with what I had to do and they did the same (Christopher, 21 years old).

Youth on the solitary stigma management trajectory seemed not to have benefited from the conditions necessary for entering the consolidation trajectory, notably, due to the significant events mentioned above that they experienced and to a lack of support in their family environment.

Discussion

This study’s objective was to explore stigma management strategies from the perspective of youth with PAHIV. This study differs considerably from previous research on stigma management because it takes family issues, in which adolescents evolve, into consideration. It also sheds light on the family’s important role in the development of HIV stigma management strategies among youth. Family issues and stigma management are generally addressed independently in the scientific literature. This exploratory analysis offers a new view on the experience of youth living with PAHIV and will help us to develop new directions for intervention not only for youth, but for their families as well. Nevertheless, this study has some limitations including small sample size and participant attrition in the larger study. A larger sample and greater retention of participants might have strengthened the analysis presented, or allowed for the identification of other trajectories. A larger sample could also have allowed for a more nuanced description of the stigma-management strategies, as some participants could have experienced weakening or dissolution with one or both parent while maintaining ties with another relative. Since the majority of participants lost to attrition were boys and older participants who cut all ties to pediatric services, the analysis disproportionately represents girls and younger participants. It is possible that the passage from adolescence to adulthood is a significant factor in the trajectory of HIV stigma management, a hypothesis that could be verified as part of a future study. Finally, the design of this study does not permit to capture other trajectories or potential changes within the identified trajectories. As such, they tend to only reflect participants’ current disease management strategies. Multiple follow-ups with participants could have shown different trajectories, such as consolidating or weakening relationships. Despite these limitations, we were able to identify some of the effects of changes in family structure and living conditions on PAHIV youth’s trajectories of HIV stigma management.

HIV-Stigma Management Trajectories

Previous studies identified three key moments upon first learning of one’s HIV status among youth with PAHIV and its relation to HIV stigma: secret, disclosure, and silence. The secret and disclosure aspects were described at length [3, 4, 6–10, 13, 14, 16]. The third key moment, silence, was documented in two qualitative studies [3, 5]. According to Fielden et al. [5], silence interferes with most of youth’s interpersonal relationships (family, friends, romantic partners, healthcare providers). Also, silence is sometimes maintained by the youth with PaHIV themselves, sometimes managed by their parents or health care providers [5]. If silence served to protect youth from HIV-stigma and decrease discomfort between family members, it also seemed to contribute to the isolation of youth with PAHIV [3, 5]. Youth could not get support from their loved ones, even from those who were also HIV-positive. Nevertheless, silence indicates a refusal to interact by both youth and their parents. The present analysis suggests that the meaning given to silence could strongly influence youth’s trajectory and their HIV stigma management strategies. On the one hand, it could be considered a time of reflection and for gaining perspective on their situation. On the other hand, silence could heighten frustrations, maintain feelings of incomprehension, and lead to isolation.

Linked Lives: Trajectories Sensitive to the Family Context of Youth with PAHIV

The present analysis sheds light on two trajectories of stigma management in which some youth experienced a consolidation of emotional ties between family members, and others, a weakening or a dissolution of family relationships.

Transition to Consolidation of Family Ties

The consolidation trajectory represents a gradual transition from a tense family situation marked by silence, to the strengthening of family ties. It seems that, combined with favorable family conditions, silence could gradually be replaced by dialogue. Youth with PAHIV who are situated on the consolidation trajectory seem to have diversified their stigma management strategies. These involve sharing their experience as well as developing complicity and a mutually supportive relationship with an HIV-infected family member, most often, their mother. These new strategies appear to have developed communally within the family environment and suggest that silence dissipated with time, which can be seen as a transition in youth with a PAHIV life course. Solidarity-based strategies of stigma management seem fostered by a set of family conditions: stability of the family environment, and acquiring greater freedom and greater maturity. Furthermore, the stigma management strategies identified within the consolidation trajectory seem to support the youth’s efforts to accept their HIV status and are likely to promote the youth’s empowerment relative to its stigmatization, as advanced by Siegel et al. [21]. Furthermore, complicity and sharing strategies seem to give a positive meaning to the illness, which could have beneficial effects on psychological wellness [32]. In addition, studies also demonstrated that contact with other people living with HIV through face-to-face conversation tends to reduce internalized stigma, as well as enhance psychological well-being [33, 34].

Turning Point Toward a Weakening or Dissolution of Family Ties

The second trajectory suggests that family ties weaken or dissolve due to a variety of events that were significant for some youth with PAHIV. These events act as a turning point that resulted in family tie dissolution (e.g. parental deaths) for some, and the weakening of family relationships (e.g. emotional distancing from parents), for others. When family conditions place youth in a vulnerable situation and when they experience many difficult significant events, silence seems to amplify frustration and isolation. Many youth within this trajectory feel forced to reorganize their everyday life by adapting to a new life context (i.e. being orphans, becoming mothers, living in foster care), often without family support, and sometimes before reaching adulthood. Importantly, Gherghel [29] highlighted that transition to aduldthood, as well as experiences of multiple disturbing events over a short period of time at an early age, are likely to have a detrimental effect on youth’s mental health and on their future trajectory. Participants within this trajectory seem to use reactive stigma management strategies, as described by Siegel et al. [21]. It seems that the impossibility of sharing with those who are also HIV-positive or being the only one in their home environment who is HIV-infected, contributes to the youth’s isolation. While aiming to appease the stigma experienced, reactive stigma management strategies instead seem to intensify feelings of stigmatization. In this regard, Fielden, Chapman and Cadell [5] propose that silence, as a strategy of stigma management in youth with PAHIV, is oppressive and interferes with their search for support. Internalized stigma and reactive stigma management strategies can have a serious impact on psychological wellness and contribute to high levels of depression, anxiety and hopelessness [35]. However, the life conditions in which the youth evolved and the challenges they met appear to have prevented them from developing other stigma management strategies, unlike youth who followed a trajectory towards a consolidation of family ties.

These two HIV-stigma management trajectories echo Cowgill et al. [24] findings. While the strategy of educating family members about HIV transmission supported stigma reduction, the strategy of establishing rules limiting contact between relatives increased stigma and led to the isolation of youth living with HIV [24]. In both studies, HIV-stigma led some families to raise emotional and physical barriers between relatives according to HIV status.

Implications for Practice

A number of clinical recommendations can be made in line with these results. First, both trajectories identified remind us of the importance of taking a broad perspective on the family experience of youth living with PAHIV when planning interventions. As complicity and experience-sharing between relatives appear to favour the diversification of active stigma management strategies, they should be encouraged and supported through systemic interventions. That is, interventions should be aimed at the entire family, so as to improve the communication skills of both parents and children, thus promoting dialogue between family members. This is in line with Murphy et al. [36] who found that open communication in families affected by HIV can increase the closeness of mother–child relationships. Interventions aimed at increasing confidence, attachment, and intimacy between family members, as well as enabling greater autonomy in adolescents, could contribute to the consolidation of family ties and to the building of a protective factor for these youth. Interventions with HIV-affected families should focus on HIV as an educational opportunity, and should work on strengthening relatives’ coping strategies, including the breaking down of physical and emotional barriers.

Finally, healthcare professionals working with youth living with PAHIV should be trained to recognize difficult family situations and signs of isolation. Fostering communication between relatives, encouraging parents to connect with their children, and ensuring successful transition in foster families when appropriate could help support youth living with PAHIV in their transition to adulthood. Pediatrics teams often have the role of a second family for their young patients. For these youth, their healthcare team represents an element of stability with whom they often create a trusting relationship. They are also often the only ones who are aware of their medical condition. Thus, the pediatric care environment should foster the development of such ties with patients who are at risk of experiencing the weakening or dissolution of family relationships. Moreover, once a youth reaches the age of majority, pediatric care services are required to transfer their patient to a clinic for adults [25, 37, 38]. This transition is likely to be difficult for youth who have no support from family and who have already lost many of their bearings [25, 37]. As suggested in Fernet et al. [25], youth with PAHIV are at risk of abandoning their treatments and medical follow-up due to the severity of their immediate problems. In order to maximise the retention in care of youth with PAHIV who are experiencing the weakening or dissolution of family ties, pediatric care should keep these patients beyond the age of majority until they become autonomous. Furthermore, the transition to adult care could be done gradually and, if need be, allow patients to return to pediatric services.