HIV normalization message and its implication on the lives of perinatally HIV‐infected youth in Puerto Rico

Abstract

Objective

To examine the impact of the HIV normalization discourse on the life of a group of perinatally HIV-infected (pHIV-I) youth in Puerto Rico.

Methods

A qualitative research study was conducted to explore the life experiences of pHIV-I youth in Puerto Rico. Twenty in-depth interviews were carried out among 12 women and eight men aged 18 to 30 years. Questions focused primarily on their life experiences and the meaning they ascribe to HIV. Interviews were analyzed and interrelationships, connections and patterns were assessed.

Findings

Normalization messages were present in most of the participants’ narratives. The majority considered their HIV diagnosis like “any other health condition” and most of them had a positive attitude towards life. When study participants positioned themselves from a social perspective, contradictions of normalization messages emerged. Some participants reported that because HIV is highly stigmatized, their rejections, discrimination and stigma experiences are different from those of patients with other chronic conditions. Those with HIV also face unique and difficult situations such as losing family members, dealing with a potentially fatal illness, and maintaining secrecy about their health conditions.

Conclusion

While the normalization discourse is very common in the medical field, it does not necessarily translate into the personal and social spheres of HIV-positive youth. Interventions to assist patients in dealing with the social implications of the HIV condition are still needed.

Introduction

At the beginning of the HIV/AIDS epidemic, the HIV condition was deemed exceptional. This was due primarily to the high levels of stigma associated with the disease, the minority and vulnerable groups that were affected at the time, the prevailing modes of transmission and the lack of treatment [1–3]. The advent and effectiveness of antiretroviral therapy (ART) challenged HIV exceptionalism; the result was that a disease that was once considered deadly became a manageable chronic condition [3, 4]. This laid the groundwork for the normalization of the HIV discourse. According to Davis [5], normalization is the process of considering something morally acceptable and normal, when it was formerly considered “odd, unnatural, crazy or deviant.” Thus the medical discourse began to regard HIV as a “disease like any other,” devoid of negative value judgments of the affected person [3].

A chronic condition is a health problem that lasts usually more than three months [6] or that is incurable [7]. Treatment for patients with a chronic condition therefore seek to reduce disease progression, manage the symptoms of the disease [7], and help patients maintain a ‘normal life’ [8]. Once HIV could be effectively treated, the perception of the disease as a chronic condition became widely accepted [7], and the normalcy discourse entered the HIV medical field. Care consequently stressed routinized HIV services, from HIV testing to HIV patient care [1]. Health providers primarily sought to integrate HIV patient care into regular health services to facilitate the identification of new cases and link them to treatment; this was part of an effort to decrease the stigma associated with the disease [9].

Normalcy entails leading a “fully functional life” in its biological, social and economic aspects [4, 10]. Applying normalcy discourse to HIV suggests that HIV patients are able to control all aspects of their condition, including stigma [8]. Philbin [3], argues that there is a disconnection between the discourse of ‘HIV as any other disease’ (normalcy) and the lived experiences of HIV-positive youth. Consequently, achieving this ‘normalcy’ for patients living with HIV is not always possible, primarily because HIV is still a highly stigmatized disease [4, 7].

Little is known about the implications of the HIV normalization discourse on the lives of HIV patients, mainly youth. The aim of this article is to examine the impact of the HIV normalization discourse on the lives of a group of perinatally HIV-infected (pHIV-I) youth in Puerto Rico.

Methods

The first author conducted a qualitative study that sought to explore the life experiences of pHIV-I youth in Puerto Rico. The study explored pHIV-I youth life in three main areas: personal, social and medical experiences.

The study was conducted at the University of Puerto Rico Pediatric HIV/AIDS Research Program (UPR- Pediatric HIV/AIDS Research Program). It received IRB approval from the University of Puerto Rico, Medical Sciences Campus and Florida International University.

The UPR- Pediatric HIV/AIDS Research Program has been providing health care services to pediatric HIV patients since 1986. The goals of the Program are to promote research, education, and treatment, and to provide comprehensive services to children and adolescents living with HIV/AIDS in order to enhance their quality of life and improve survival. Currently, it provides comprehensive services to 45 children and adolescents living with HIV, 90% of who acquired HIV through perinatal transmission.

The UPR- Pediatric HIV/AIDS Research Program has been the venue for groundbreaking research in the area of HIV [11] and in providing comprehensive services to the pediatric HIV- positive population [12]. Since 2011, Puerto Rico has not reported any new cases of HIV due to perinatal transmission. The island and Cuba are the only two Caribbean countries that have achieved the goal of eliminating HIV perinatal transmission [13, 14].

Purposeful sampling was used to recruit study participants. This sampling method seeks to select information-rich cases to study in depth [15]. Powerful or rich cases are those “from which one can learn a great deal about issues of central importance to the purpose of the research” [15]. Recruitment of study participants was carried out in collaboration with the staff of the UPR- Pediatric HIV/AIDS Research Program. Program staff explained the purpose of the study to potential participants and invited them to participate if they met the inclusion criteria: being 18 years old or older, being a former or current patient of the UPR- Pediatric HIV/AIDS Research Program, having HIV due to perinatal transmission, and being willing to share their life experiences in an interview. Written informed consent was obtained, and participants were clearly told that they could stop and withdraw from the interview at any time. Twenty-two potential participants were invited to be part of the study, and of these, only two declined. One of them reported not having the time to participate and the other one refused to provide a reason. Twenty in-depth interviews were conducted with 12 women and eight men between the ages of 18 to 30 years old (See table 1). An interview guide was developed by the first author with the aim of having a conversation with the participants about their life experiences as pHIV-I youth living in Puerto Rico. The interview guide questions were categorized into three main areas: personal, social, and medical experiences. Experts in perinatal HIV-infection (including a pediatrician, a social worker and a public health specialist) assessed the interview guide and provided recommendations regarding the order and the wording of some of the questions. Their suggestions were incorporated. The interview guide was piloted with a potential participant, and no changes were made after conducting the pilot.

Table 1.

Demographic Characteristics by Gender

Characteristics	Male	Female
	8	12
Age distribution
18–21	5	6
22–25	2	5
>26	1	1
Highest Academic
Degree Completed
Middle School	0	2
High School	8	10
Marital Status
Single	6	10
Married or cohabitating	2	2
Employed
Yes	5	6
No	3	6
Studying
Yes	5	5
No	3	7

The interview guide was used as a tool to lead the discussion rather than as a strict questionnaire. Participants were allowed to speak freely about their experiences. Whenever necessary, the first author probed with additional questions to maintain the conversation flow. All interviews were conducted in Spanish, the first language of the study participants and the first author. Participants received a monetary incentive after completing the interview for their time and for being part of the study. The interviews lasted approximately 45 to 90 minutes. The interviews were voice recorded, then transcribed verbatim by the first author. The identifying information was removed from the transcripts to ensure confidentiality. Subsequently, a graduate research assistant who was proficient in both English and Spanish and immersed in Puerto Rican culture translated each interview into English. It is noted, however, that the original Spanish text was used in conducting the qualitative analysis, thus avoiding a third level of text interpretation as indicated in qualitative procedures. To facilitate the systematic processing of the information from the in-depth interviews and the coding process, we used the qualitative analysis software NVIVO 10.

Data analysis

An interpretive approach was followed. After reading and re-reading each interview to get a sense of the overall participants’ life experiences, several meaning units were identified. These units constitute the parts of the data that communicate sufficient information and were used for the analysis [16]. The meaning units were classified into three domains: personal, social, and ‘reality’. They were then coded (into categories within each domain) and the relationships and inter-connections among these categories were established. This process helped us to better understand the impact of normalization messages on the lives of pHIV-I youth in Puerto Rico (See figure 1). This article specifically analyzes the normalization messages that emerged in the narrative of the study participants. Other topics that emerged are published elsewhere [17, 18]. Actual quotes from the study participants (meaning units), under fictional names, will be presented to support the results.

Figure 1.

Findings

Personal context

Normalization messages were found in all spheres of the participants’ lives and in different contexts. The personal context is that in which the participants talked about their health situations and shared their perceptions of their HIV diagnosis. The majority of the respondents considered their HIV diagnosis as something they needed to address like “any other health condition.” This is the case of Arturo, 22 years old. He shared with us his view of HIV: [Talking about HIV] “A condition like any other. It’s like arthritis, for me HIV is like arthritis. If you don’t treat, it you are screwed. That’s it.” Arturo’s opinion regarding HIV was shared by other study participants such as Alonso, 20 years old, who stated: “For me, HIV is a condition that I have, like someone with diabetes; it is a condition I was born with and that’s it. But it hasn’t bothered me at all.”

The majority of the study participants had a positive attitude toward life and showed a great level of resilience after overcoming many challenges. For them, HIV represents only “a chronic condition” with which they have to live. All of them considered themselves “normal” individuals in most ways, the exception being that they must take medication to remain healthy. In the words of Marina, 23 years old: “Well honestly since I was little I have been saying that I have a different type of blood than yours. But I think I am a regular person, normal, I can do whatever…”

Social context

When study participants positioned themselves within a social perspective, contradictions to the normalization messages began to emerge. Some participants reported that, because HIV is highly stigmatized, their experiences of rejection, discrimination and stigma are different from patients with other chronic conditions. Even though they considered themselves “normal,” they feared being discriminated against or rejected by others. This was the case of Emma, 20 years old, who wanted to reveal her diagnosis to her friends but was frightened: “I’ve wanted to tell my friends, but I’m scared to. I don’t know how they’ll react; I don’t know. But I’ve thought about it a lot.” Others thought that ‘people’ (referring to society in general) are still not prepared to deal with an HIV-positive person. Carla, 23 years old, told us: [Talking about revealing her diagnosis] “It worries me, for fear of rejection, because there are people who have the capacity to understand but some don’t.”

Reality context

The last context is what we called the ‘reality’ context. This context is where all the normalization messages merge and where the impact of these messages becomes more evident. While the respondents claimed to be like any other youth, they nevertheless have faced unique and difficult situations shared only with those with HIV due to perinatal transmission. These situations included losing family members, dealing with a potentially fatal illness, and maintaining secrecy about their health condition. Five study participants reported losing both parents due to HIV; another eight had lost at least one parent.

My [small pause] mother died the day of my 1st birthday. It’s very, very painful, because my mom was only 26 years old when she died, a girl. And not being able to, how do I say it, not being able to have her next to me, at the time I found out about the condition, and for her to help me, hear her voice, to know how she spoke, to feel her next to me, we would have gone through the same, we would have been able to understand each other so well. And not to have been able to live those experiences, well… (Isabel, 22 years old).

In addition, some of those interviewed have dealt with the long-term effects of their medications. Because antiretroviral therapy (ART) can result in lipodystrophy, a condition in which body fat is redistributed, the physical manifestations of the medication can be difficult to conceal. Fernanda, 29 years old, suffered from lipodystrophy and even though she struggled with the impact of lipodystrophy on her body, her perception of her HIV infection followed a normalization message: Well, now it is just part of my life [referring to her HIV infection]. When they told me about my diagnosis, I was afraid, but now it is something normal for me. For me it is just normal.

Among the study participants, lipodystrophy reportedly had the greatest impact, both physically and emotionally.

Fernanda was one of the oldest study participants so; we were able to see how the normalization message intersects with other themes like fear of rejection. It is also evident in her narrative that the normalization message is something that is dynamic rather than static. We can see the transformation of her perception regarding HIV and rejection. Fernanda narrates that when she was young she was afraid to share her HIV diagnosis with others and feared rejection by the people she loved. HIV was far from being normal.

Talking about revealing her diagnosis to her significant other when she was young]… back in the day, it was not as easy as it is today. Now, with my age, if I want to be with someone, I will tell him. Do you want to be with me? Well, I have this [referring to HIV]. Back in the day, I was ashamed to reveal my diagnosis, and when I met a man, I was afraid that he would reject me.

When Fernanda was 17 years old, she became pregnant; she narrates how the father of her daughter rejected her because she did not disclose her diagnosis.

The father of my daughter found out [about her HIV condition] when I got pregnant. When I knew I was pregnant, I told him and what happened was what I was most afraid of; he rejected me and kicked me out of his house. He got afraid and didn’t want to know anything about me. [WHY DO YOU THINK HE REJECTED YOU?] Because I did not tell him [her HIV diagnosis].

Unlike children with other chronic diseases, pHIV-I children are less likely to be told about their illness [19]. Mauricio, 19 years old, told us about his experience when he was told his HIV diagnosis: “Well, it was a very difficult experience, because I never imagined I would have that condition.” Significantly, Mauricio did not even mention the word HIV in his narrative. He used the term “that” to refer to his HIV diagnosis.

Discussion

The normalization messages found in participants’ narratives were not surprising. Since 1991, scientists and medical literature have referred to HIV as a chronic illness [7, 20]. In our study, the normalization messages prevalent in participants’ interpretations of their lived experiences correlate with the medical discourse of HIV as a “chronic condition”. For most of the study participants, HIV was like having diabetes or arthritis. However, the social environments in which participants’ lives unfolded seldom considered HIV as “normal”.

The medical discourse with respect to HIV has changed, but the social implications of having HIV has not kept pace with the change. The stigma associated with HIV was one of the biggest factors shaping participants’ perspectives about their HIV diagnosis. In their narratives, the impact stigma has had in their lives was evident. When their comments are taken as whole, they acknowledge that what bothers them most is the stigma that surrounds the condition rather than the condition itself. Conflicting messages were found in their narratives. They considered themselves “normal” and considered HIV like “any other condition,” but they feared revealing their diagnosis and being rejected and discriminated against. The normalization discourse does not translate into their reality. Other authors have highlighted that, even though the HIV stigma has lessened in recent years, there are still remaining problems that stigmatize HIV patients [4, 7, 21]. As Herek [22] has noted, AIDS stigma is universal.

Our study findings compared to other studies showed that there is not a straight line between biomedical HIV normalization messages and the social and economic reality of people living with HIV [4]. Within the normalization paradigm, it is expected that the person living with the chronic condition can effectively manage and control all aspects of his/her condition. In the case of HIV, it is expected that if the person can live a “normal” life, she/he will also have the ability to control the HIV stigma [4]. For people living with HIV, this has not always been the case. During the early years of the HIV epidemic, the discourse and the behaviors associated with the disease left an impact on people, making it very difficult for people living with HIV to avoid internalizing that message [23]. Despite study participants being born at the beginning of the epidemic and being too young to remember the onset of the epidemic, the majority of them have a family member that had suffered from HIV/AIDS. They have seen them suffer and struggle with the condition and have learned through vicarious experiences. While there has been a movement to normalize HIV treatment and medical care, the conditions outside of the clinical setting are far from “normal” [4].

One of the aims of normalizing messages in the HIV field was to routinize the care and treatment of HIV patients and to reduce the stigma associated with the condition [3, 9]. Despite the effort to normalize HIV, HIV is unlike any other chronic condition and continues to be exceptional in many ways. HIV is considered both chronic and infectious at the same time. This presents special challenges for those living with HIV; they are dealing with a “manageable” chronic condition, but also with an infectious, incurable and highly stigmatized disease [4].

Among those living with HIV, pHIV-I youth are a very particular population. No other HIV-positive group has had to endure what pHIV-I youth have had to go through, such as losing one or both parents due to HIV, not knowing their HIV diagnosis, and concealing their medication intake by saying it is for other less stigmatized conditions [24]. Being diagnosed with a chronic condition during adolescence can be difficult, as it can affect a teenager's own perception of “attractiveness, interpersonal skills and sexuality” [25]. PHIV-I youth have to confront and overcome not only the challenges of adolescence but also the challenges of growing up with a highly stigmatized chronic and infectious disease.

Conclusion

Medical advances have succeeded in prolonging the lives of people living with HIV. However, interventions to assist patients in dealing with the social implications of the condition are still needed. It is important for health professionals to recognize that, even though the normalization discourse is very common in the medical field, it does not necessarily translate easily into the personal and social spheres of HIV-positive individuals.

PHIV-I youth are still a vulnerable population that remains at the margins of the normalized HIV discourse. It is imperative to recognize the uniqueness of this population and to help those affected address the realities of a social environment that is far from considering HIV as “normal” and where they still face the stigma associated with the condition.

Fernanda’s narrative showed that normalization is a process linked to factors such as time and life transformations. The impact of the normalization messages at the different developmental stages of the HIV patient could be further pursued in a future research.

Study Limitations

Several study limitations need to be discussed. First, due to sample size and the nature of the study, generalization of study findings cannot be made. Participants’ life experiences are individual and context-dependent. Therefore, the life experiences of pHIV-I youth in the metropolitan area of Puerto Rico may not be the same as that of a youth in the rural area or in another Caribbean island.

Since this is a qualitative research study, it is only fair that I disclose any experience that shaped my interpretations. As a young girl, at −10 years old, my life was affected by the loss of a beloved family member due to HIV. This experience has shaped my personal life, my professional choices, and my research interests.