“I’m Not Fragile. I’m Not Limited”: Career Aspirations of Youth With Perinatally Acquired HIV

Abstract

Although children born with perinatally acquired HIV (PHIV) are now living into adulthood, little is known about their transition into the workforce and the ways they develop career aspirations. In this phenomenological study, 35 youth with PHIV (mean age 20.7) completed semistructured interviews regarding their career aspirations which were transcribed and coded for emergent themes using grounded theory. Approximately half of the participants were employed at the time of the interview. Sixteen participants aspired to work in helping professions. Others sought employment in the arts or business sector. Participants indicated that parents/guardians and medical providers were generally supportive of their career interests. Providers and social workers often helped them find jobs and construct resumes. Thirteen participants indicated that their HIV status had little impact on their career aspirations. Others believed HIV-related challenges related to transmission, physical difficulties, and emotional turmoil limited their ability to pursue certain careers. Several felt inspired to fight against HIV-related stigma/discrimination. It is important to encourage youth with PHIV to prepare for their future by routinely holding conversations regarding their career goals.

Keywords

career aspirations adolescents and young adults perinatally acquired HIV

Perinatal HIV infection was first publicly recognized in the United States in 1983 (Rubinstein et al., 1983). The numbers of infected children born to women with HIV infection rose until 1992 when antiretroviral drug treatment decreased the rate of mother-to-child-transmission from 25% to 5% (Cooper et al., 2002). Continued medical advances have significantly decreased AIDS-related deaths, and today youth with perinatally acquired HIV (PHIV) are now living well into young adulthood. There are approximately 10,500 individuals with PHIV in the United States (Centers for Disease Control and Prevention [CDC], 2013).

As adolescents and young adults (AYA) with PHIV continue to age, they must prepare to face the same normative developmental tasks as typical youth, such as exploring career or educational opportunities (Rotheram-Borus & Miller, 1998). However, such undertakings can be challenging due to HIV-related cognitive delays, mental health issues, and frequent illness (Garvie et al., 2014). Given that many AYA with PHIV were not expected to survive to childhood, parents and medical providers may be unfamiliar with strategies for discussing and supporting education and employment-related goals. Consequently, AYA with PHIV may be less prepared to pursue postsecondary educational opportunities or develop realistic career aspirations. Because the emergence of this population is relatively new, little is known about their transition into the workforce and the ways they develop career aspirations.

An individual’s career aspirations are shaped by personality constructs, ability, achievement, and social influences (Brown & Lent, 2005). Previous literature has explored how HIV has influenced the career aspirations and the development of career-oriented trajectories of persons living with HIV/AIDS (PLWHA). Although PLWHA today are able to enter the workforce or remain in their current jobs for longer periods of time than in the past, they must still contend with employment discrimination, the process of explaining gaps in employment history, and the stigma surrounding disclosure of their condition (Dahlbeck & Lease, 2010; Dyer, Tillman, & Sequeira, 2006; Maguire, McNally, Britton, Werth, & Borges, 2008; Mendias & Paar, 2007). These factors not only complicate an individual’s experience in the workforce but may also discourage him/her from entering or re-entering it in the first place (Dyer et al., 2006; Rodger et al., 2010).

Many scholars have examined the challenges associated with securing and maintaining employment. Brooks, Martin, Ortiz, and Veniegas (2004) found that PLWHA often experience HIV-related discrimination in the form of denial of insurance, scrutiny on housing and employment applications, and denial of entry into the U.S. military. Beyond employment barriers imposed by the workplace, factors related to illness management and the nature of the disease itself have also been studied within extant literature. PLWHA must adhere to highly active antiretroviral therapy (HAART), which involves a strict and time-consuming medication regimen that is often associated with physical side effects such as decreased concentration, weakened mental capabilities, headaches, and nausea (Bhatti, Usman, & Kandi, 2016). Coupled with the fact that the symptoms of HIV/AIDS can be unreliable, the fickle and time-intensive challenges associated with the management of HIV/AIDS can make it difficult for PLWHA to function physically and mentally within the structure of a typical workday (Braveman, Levin, Kielhofner, & Finlayson, 2006; Dyer et al., 2006; Presnell, 2006; Rodger et al., 2010). In addition, such issues can require frequent medical appointments that result in work absences, making it more challenging for patients to maintain a consistent performance over time (Dahlbeck & Lease, 2010; Presnell, 2006). Consequently, the burden imposed by disease management tasks can negatively impact an individual’s health and job performance in the short and long term.

In addition to examining physical challenges, scholars have discussed the ways PLWHA must also grapple with the emotional and psychological consequences of their condition. As patients attempt to reenter the workforce following their HIV/AIDS diagnoses, they must also make adjustments to their lifestyles, goals, and identities. A large body of literature has examined the intersection between identity and unemployment, finding that the lack of a job or other activity leaves some PLWHA with depression, feelings of a loss of societal engagement, low self-esteem, shame regarding the inability to provide for their families, and longing to feel like a contributing member of society (Hergenrather, Rhodes, & Clark, 2004; Maguire et al., 2008; McReynolds, 2001; Nixon & Renwick, 2003; Presnell, 2006; Rodger et al., 2010). As PLWHA struggle with poor psychological health and search for a sense of worth, many turn to drug abuse, making it more difficult to find or regain steady employment (Conyers, 2004). Furthermore, the process of returning to work can be affected by the individual’s perception of the illness itself. Although recent medical advancements have extended the lives of patients with HIV/AIDS, a diagnosis is still viewed by many as a terminal illness. Previous literature has found that PLWHA who adopt the pervasive view of HIV/AIDS as a “death sentence” believed that their condition would render their efforts or future plans futile. Consequently, they were less likely to pursue employment than those who considered their HIV status as a chronic condition (Maguire et al., 2008). Regardless of the ways in which they view their illness, PLWHAs searching for employment often experience shame, anxiety regarding disclosure to a future employer and coworkers, confusion related to a loss or shift of career identity, desperation to regain a sense of personal accomplishment, and fear of returning to work after being unemployed for a long period of time (Conyers, 2004; Maguire et al., 2008; Presnell, 2006). The psychological burden of unemployment can hinder future reemployment for PLWHA as they struggle with the erosion of their identities and uncertainty regarding the acceptance of their condition within a work environment.

Although some literature explores individual’s personal struggle with his or her illness, several scholars have highlighted the impacts patients’ support systems and relationships may have on their vocational pursuits. Conyers (2004) found that PLWHA without work often experienced strained family relationships and shame, especially as members pressured patients to acquire jobs before they were physically or emotionally ready. Conversely, when classified by family members and providers as “too sick to work,” PLWHA not only felt outwardly discouraged from pursuing a job or other activities but also lowered their own expectations regarding their capacity to act as a viable member of society (Conyers, 2004).

In essence, PLWHA often find that their disease and employment readiness are misunderstood by those within their social networks, which can generate feelings of increased stress, embarrassment, and worthlessness. However, despite the potential negative effects of these relationships, patients can be positively impacted by others’ perceptions of their disease and overall support. Scholars have found that when family members and health care providers refrain from assigning “sick roles,” PLWHA often feel more confident in their ability to search for and acquire employment (Conyers, 2004; Hergenrather et al., 2004). Furthermore, the vocational rehabilitation process for PLWHA can be influenced by the resiliency of one’s social network, the emotional and informational supports these networks provide, and the model of work seeking behavior promoted by members within these groups (Frain, Berven, Chan, & Tschopp, 2008; Hergenrather et al., 2004). Ultimately, support systems play an important and complicated role in the lives of PLWHA, as they can both hinder and encourage the pursuit of career aspirations.

Motivations for returning to work can also extend beyond a personal and social reconciliation with an HIV/AIDS diagnosis. Studies have shown that a major motivating factor for PLWHA to reenter the workforce is the desire to financially provide for one’s family (Conyers, 2004; Hergenrather et al., 2004). In addition, many PLWHA experience extreme financial stress imposed by the various costs associated with HIV/AIDS such as with antiretroviral medications, protease inhibitors, lab tests, and emergency visits to the hospital (Dahlbeck & Lease, 2010). Cho and Chan (2013) concluded that PLWHA are often motivated to remain employed to cover these expenses. However, the relationship between employment and financial support for PLWHA is extraordinarily complex. Previous literature discusses how PLWHA who qualify for federal or state subsidized assistance often fear that employment could increase their income level and cause them to lose eligibility for these benefits. Consequently, patients are often apprehensive that the income from a newly found job will be insufficient to cover these expenditures (Conyers, 2004; Dahlbeck & Lease, 2010; Dyer et al., 2006; Maguire et al., 2008). As a result, PLWHA are left to contend with the issue of remaining unemployed to support their physical health amid their personal desire to work, seek fulfillment, and support their families.

Medical providers are in a unique position to help PLWHA understand their vocational and career limitations. They can also counter the common view that HIV is a “death sentence.” Research suggests that the quality of the patient–provider relationship influences outcomes for PLWHA including adherence, quality of life, appointment attendance, drug and alcohol usage, continued engagement in care, and other clinical indicators (Beach, Keruly, & Moore, 2006; Mallinson, Rajabiun, & Coleman, 2007; Schneider, Kaplan, Greenfield, Li, & Wilson, 2004). Research to date has not explicitly studied the influence of providers on patients’ career aspirations. However, youth with PHIV typically have positive and long-standing relationships with their pediatric providers (Fair, Sullivan, Dizney, & Stackpole, 2012). It follows that a strong patient–provider relationship would affect the ways in which AYA with PHIV explore career and educational options.

Although scholars have studied employment considerations in the context of the financial, psychosocial, and physical impacts of HIV/AIDS, the majority of this research focuses almost exclusively on adults with behaviorally acquired HIV infection. In general, there is a paucity of research regarding the ways AYA with PHIV navigate the process of career development amid other stages of personal and emotional growth that occur during adolescence. In a study of youth living with HIV between the ages of 14 and 23 years, higher career planning scores, or the extent to which participants believed that they were exploring education and professional opportunities, were found to be associated with less emotional stress and the use of positive coping mechanisms (Lightfoot & Healy, 2001). This study echoes similar connections between psychosocial health and future-oriented planning found in previous literature. Yet, it does not delve into factors that might shape the aspirations they construct. Furthermore, there is no investigation regarding the relationships among career planning, perceptions of one’s illness, and social supports in an adolescent’s life, factors that previous research has shown to be significant in the study of adults living with HIV/AIDS (Conyers, 2004; Hergenrather et al., 2004; Maguire et al., 2008). In addition, much of the current literature centers upon the challenges to employment faced by adults with HIV/AIDS, as they exit and reenter the workforce following an HIV/AIDS diagnosis. Given that AYA with PHIV have grown up with their HIV status, their attempts to find employment will not include such an identity or employment status shift that typically presents difficulties for PLWHA within the pre- and postdiagnosis period. Thus, this project seeks to fill these gaps in the literature by examining the career aspirations of AYA through the unique and largely unstudied lens of PHIV. In addition, relevant factors that influence these plans and the processes involved in their construction will be examined. Finally, the motivations behind career-planning decisions will be explored.

Method

Participants

The authors’ Institutional Review Board approved this study. Overall, 42 AYA were invited to participate in the study. Participants were recruited from two pediatric infectious disease clinics in the Southeastern United States by a social worker who then referred those interested to a member of the research team. AYA were eligible to participate if they were aware of their HIV status, over the age of 14 years, did not have cognitive impairments that would interfere with their abilities to answer interview questions, and could communicate in English. Of those invited to participate, 25 AYA were interviewed by the principal investigator and 10 by another trained interviewer. Each completed a semistructured, recorded interview either in person or over the phone which lasted approximately 45 min. Three potential participants declined and four could not be reached after initially agreeing to participate.

Interview

The data analyzed for this article were part of a broader project focused on future aspirations of AYA with PHIV. We specifically examined childbearing, relationship, and career aspirations. Data on childbearing and relationship goals are published elsewhere (Fair & Albright, 2012, 2015). The primary intention was to examine how the newly emerging cohort of AYA with PHIV viewed their future. The following interview questions were designed to explore the career aspirations of AYA with PHIV, the effects of external sources of support on these goals, and the ways their HIV status had impacted or would impact them:

What do you see yourself doing in the future?

Have you talked to your family about your future? What do they think of your goals?

How, if at all, did your HIV status influence your current plans for the future?

Have your doctors, nurses, or medical providers influenced the kinds of dreams you have for yourself?

Data Analysis

A phenomenological framework was applied to this study, as the authors sought to use “analysis of lived experience to understand how meaning is created through embodied perception[s]” of patients with PHIV (Starks & Trinidad, 2007, p. 1373). Through this approach, commonalities among participants’ experiences with a given phenomenon are identified. Subsequently, a description is created that not only reflects the essence of these experiences as a whole but also portrays the world in which the phenomenon is situated (Creswell, 2013; Moustakas, 1994; Roche, 1973). Phenomenology is appropriate for this project as the study strives to capture and explore the realities AYA with PHIV face as they undergo a developmental transition into the adult world within clinical and professional settings. To derive these insights from the interview data, the principles of grounded theory were used. Rather than affirming a series of predetermined concepts or existing hypotheses, this strategy invokes a systematic coding process to identify emergent themes among diverse narratives and emphasize the perspectives of participants (Glaser & Strauss, 1967). Given that grounded theory can “offer insight, enhance understanding, and provide a meaningful guide to action” (Strauss & Corbin, 1990, p. 12), this method is fitting for the current study which aims to understand the perceptions of AYA with PHIV and use these insights to inform broader avenues of discourse surrounding these individuals in a variety of settings.

Upon completion of transcription, the interviews were compared to the original audio recordings to ensure accuracy. Following the grounded theory model, authors began by reading through each transcript in its entirety. The transcripts were then entered into the qualitative data analysis program Atlas.ti 6.0 (Muhr, 2008). This software was used to complete an open-coding process, in which codes were constructed that categorized these experiences (Strauss & Corbin, 1990). During this process, the authors met several times to discuss findings until they had created an agreed upon set of codes and categorical designations for the given data.

Findings

Through semistructured interviews, the career aspirations of AYA with PHIV were revealed. Table 1 summarizes demographic characteristics of the sample (mean age = 20.7 years, range = 15–30 years). The majority of participants were female (65.75%) and African American (77.1%). Approximately half received Medicaid and lived with a biological or adoptive parent. Almost half of the sample had some college or vocational training indicating that they had completed high school and were able to pursue secondary education. The demographics of the sample reflect those of the two clinics from which they were recruited. Nearly half of the participants noted career aspirations in social service professions (n = 16) including health care, social work/counseling, and education, followed by the pursuit of higher education (n = 7). Many AYA mentioned multiple aspirations. See Table 2 for further classification.

Table 1.

Participant Demographic Features (N = 35).

Demographic variable	n	(%)
Age
M	20.7 years	(range: 15–30)
Females	23	(65.7)
Ethnicity
Black/African American	27	(77.1)
White	3	(8.6)
Hispanic	2	(5.7)
Mixed race	3	(8.6)
Insurance
Private insurance	12	(34.3)
Medicaid/Ryan White	18	(51.4)
Uninsured	5	(14.3)
Taking antiretroviral treatment	31	(88.6)
HIV symptoms in past 6 months	5	(14.3)
Type of clinic for HIV care
Adult	5	(4.3)
Pediatric	30	(85.7)
Living situation
Lives with parent	18	(51.4)
Lives independently	8	(25.7)
Lives with other relative	6	(17.1)
Lives with partner	2	(5.8)
Education
Some HS	2	(5.7)
Currently in HS	9	(25.7)
HS graduate	5	(14.3)
Some college/vocational school	16	(45.7)
College/graduate degree	3	(8.6)

Note. HS = high school.

Table 2.

Career Aspirations.

Career	n
Social service	16
Education	7
Arts	6
Business	5
Hospitality	4
Other	4

Through qualitative analyses, two primary themes and several subthemes were identified. First, participants’ career aspirations were linked to their relationships with families and medical providers. The support offered by medical providers was particularly impactful and was classified as general encouragement, instrumental support, and adherence encouragement. The second prominent theme identified was the participant’s HIV status. Although some felt that their HIV status had little to no impact on their future decisions, others described challenges the disease presented. However, AYA also felt that their HIV status was a calling that motivated them to work within the field of HIV to address the challenges. A final subtheme was “carpe diem” and related to the finding that some AYA felt their HIV status brought their future into sharp focus and directed their goals. See Table 3 for qualitative themes.

Table 3.

Qualitative Themes of Career Aspirations.

Impact of families and medical providers	Impact of HIV status
Family support	Little to no impact
Medical provider support	Disease-related challenges
General encouragement	A calling
Instrumental support	Carpe diem
Adherence encouragement

Impact of Families and Medical Providers on Career Aspirations

Family member support

Almost all participants (32 of 35) noted how their family members impacted their career choices. One 24-year-old female discussed how her mother’s recommendation to work within the field of law led her to obtain a job as a legal assistant and pursue the required education to be a paralegal.

[My parents] were very supportive about my decision to go into law and actually, my mom suggested too that law would be a good area for me. And a lot of people think that I should even become an attorney because of my attitude and I like to debate. I’m good at debating.

Like the young woman above, others recounted the ways their families offered emotional support through general encouragement to develop their talents or pursue their interests and instrumental support through financial assistance.

Medical provider support

Many participants had received care at the same clinic from birth through adolescence, which allowed them to develop strong relationships with their medical team. Consequently, doctors, nurses, and social workers were seen as crucial members of the social support networks of AYA with PHIV and offered support in the areas identified below.

General encouragement

Almost all participants (34 of 35) acknowledged that medical providers encouraged and motivated them to pursue their goals. Several noted that the long-standing bond they held had served as a consistent source of support since childhood.

They influence me a lot because a lot of the nurses and the doctors that I have, they were with me since I was a little girl and they’ve watched me growing up. They’re rooting for me, so that really helps. (27-year-old female)

When explaining how this support caused him to involve his doctor in decisions related to his future, one participant stated,

Just talk to your doctor first. That’s what I think would be the best thing because nobody knows yourself better than your parents and your doctors. (19-year-old female)

Two other AYA described how close relationships with their medical team served as sources of motivation:

I spend a lot of time with my doctor and it’s so awesome to have a close relationship with someone that knows so many close, intimate details about yourself. You’d expect them to be a friend . . . So it’s great that I have her here to kind of push me. (20-year-old male)

They’ve been a big influence. They just keep telling me that I can do it, and they keep me motivated. And they help me with my illness. It’s pretty much easy for me to talk to them about it let alone talk to anyone else. (22-year-old male)

Because AYA often felt self-conscious in discussing their disease with peers or others outside of the medical realm, they relied upon their providers to act as an outlet. Furthermore, these young adults took comfort in receiving encouragement from figures that were familiar with their condition and would not inflict judgment upon them. Overall, participants felt that the encouragement from providers was meaningful due to the personal and medical knowledge they held.

Instrumental support

Other AYA expanded on the support of medical providers to discuss the concrete assistance they provided. About one third of participants (10 of 35) acknowledged how clinicians provided them with tangible resources to help them with their career endeavors, such as information regarding school programs, job opportunities, standardized testing preparation, potential scholarships, and resume writing. Overwhelmingly, analyses revealed that social workers played a crucial role in the process AYA underwent to pursue their career aspirations.

My social worker has helped me out a lot regarding helping me get my own space, and she’s always on top of trying to figure out how to keep me in school or stuff like that, so they all help. (20-year-old female)

Well, [my social worker] actually, she helps me. She actually helps me with school and everything. Also helps me find jobs, helps me with my resume as well. (22-year-old male)

[My social worker’s] always like, “that’s a great idea!” when I talk to her about certain things I want to do at school, or when I want to talk about college she’s always like, “go for it!” or “don’t be afraid to leave the city!” and stuff like that . . . Oh yeah, [she] did find me a help, she gave me papers for a scholarship that has to do with people who are infected with HIV and AIDS. (17-year-old female)

Although many AYA utilized this support, it was particularly helpful for those who were unable to rely on their family members for this form of guidance.

Since I was a child, they’re like a second family so they talk to me about it, stuff like that, if I ever need help and all the stuff like that. It’s basically if my parents aren’t able to talk to me, I have somebody to talk to. (19-year-old male)

Another 23-year-old female shared how her medical team was able to help her secure basic resources while also fulfilling parental roles that included both emotional and informational support:

They make sure that I always have food and in school, it sounds crazy but when you’re in school and you’re trying to get things like food stamps, they give you such a hard time . . . you know, they write me letters and advocate for me as well. And so if I need gas, they give me gas cards. If I need food, they’ll give a Wal-Mart card. They’re always there for me to talk to or email. I think that they really, especially my nurse and my social worker, they take on the fact that I don’t have a mom and they take on that role and they see that I really need it and they’re very open and honest with me.

Adherence encouragement

Doctors, nurses, and social workers often reinforced the connections between medication adherence and the aspirations of AYA. Several participants (seven of 35) received regular reminders from their doctors, nurses, or social workers to take their medications to be physically able to pursue their goals.

They try to help me, to help me take my medicine. They tell me that if I take my medicine I can live a long way from now. (20-year-old female)

Well, they just push me to take my medicine everyday so I can be stronger, so I can go on and get better jobs and everything. (19-year-old female)

Impact of HIV Status on Career Aspirations

The influence of a participant’s HIV status on his or her career aspiration was varied. Some felt it had minimal impact while others articulated how living with HIV had shaped their career goals.

Little to no impact of HIV status

Less than half of the participants (13 of 35) explained that their HIV status had no impact on their past or current career aspirations. A 21-year-old female explained, “It hasn’t influenced it at all because it hasn’t kept me from doing what I want to do.” Describing this concept further, some AYA (three of 35) mentioned how the insignificant influence of their disease on their future plans was due to adherence as noted by this participant who said, “It didn’t really. I just have to keep making sure I take my medicine. That’s pretty much it.”

A few (two of 35) AYA admitted that while their HIV status had originally influenced their future-oriented decision making, this view had changed over time, as they no longer believed that their disease impacted these choices. For one 23-year-old female, who aspired to work in the music industry, this realization was fairly recent. As she describes,

I think that it took me a while to figure out exactly what I wanted to do . . . I think that unconsciously I’ve always thought that there were only certain things I could do because of my HIV status and I think that within the past few months I’ve let that go. I’ve realized that I’ve been living with this disease my entire life and I’m not fragile, I’m not limited. I just had to take the time to step back and look at my life and see that everything I’ve always set out to do I have accomplished and nothing has ever stopped me from doing that.

Initially, this young woman believed that her illness would hinder her ability to achieve her goals and consequently made choices centered upon this belief. However, after considering her past, she concluded that HIV had not acted as a limitation and that her illness would not prevent her from becoming a producer or lyricist in the future. A similar sentiment was echoed by a 21-year-old female, who stated,

Well recently, . . . I guess within a year or so, I guess you could say that my HIV affected me with my decisions that I’ve made. But then I finally realized, I was just like I shouldn’t make decisions based on my HIV and like what I can accomplish or what I can do.

Disease-related challenges

Several AYA (five of 35) indicated the ways the physical symptoms associated with HIV/AIDS made it difficult to pursue their education or employment goals. One 25-year-old female explained,

Because I have a lot of up days that I’m ok and then I have a lot of down days and no one may know why, and it just takes a lot more physical toll and then that physical toll takes on an emotional toll.

Another HIV/AIDS-related barrier to career aspirations was the fear of disease transmission while working in a given field. This experience was recounted by a 20-year-old female who worked as a dialysis technician and had plans to become an emergency room doctor:

I had a moment where I wasn’t sure if I’d be able to just because I was afraid that I would have to either tell my patients, and if I did have to, they wouldn’t want me workin’ on them, or just stuff like that. Or I was afraid an accident might happen and I’d somehow pass it to someone, I don’t know. But I think I’m still tryin’ to get past my fears of that and just go for it, but it’s still some of the time that I think about it.

These fears were also mirrored by an 18-year-old male who aspired to enter the police force:

Since my blood would be you know, more dangerous than somebody else’s who’s not HIV-positive then I wouldn’t be in the field as much. . . That could affect how much field time I have but, I mean it doesn’t really change what I want to do.

A calling

Given their lifelong journey with HIV, several (five of 35) AYA felt compelled to enter a field, job, or volunteer position in which they could provide education and awareness regarding their illness. One 27-year-old female wanted to reach out to other youth with HIV and use her life to portray a realistic, yet positive experience with the disease:

I want to use my life as a positive so that people who are infected with HIV [learn that] just because you’re infected, HIV is something that happened to you, it doesn’t define who you are. And there is life after HIV. . . And especially for youth who were born with HIV or AIDS, a lot of times, they’re depressed and a lot of the things that they went through, being a part of the first generation, I can recognize and see those issues.

At the same time, she felt compelled to address the general public, warning them of risky behavior that could lead to the transmission of HIV/AIDS.

And then also, the other part, I want to use my life as a warning for people who are negative, because even though I was born with this disease, this is the same disease you can get if you don’t choose wise behavior. So, I use my struggles of being sick as kind of a warning of what people don’t want to go through.

Another participant expressed how she felt that a job that allowed her to speak about HIV/AIDS through a public platform might also contribute to preventative and curative efforts:

You don’t have to be ashamed to talk about AIDS because even though it is a touchy subject, but in order to solve the problem of HIV and AIDS, you have to talk about it. (20-year-old female)

Others were interested in employment that allowed them to identify with others who were also navigating similar social challenges. A 25-year-old female described the reasons she began working at suicide hotline and the ways it related to her HIV status:

What I always found pretty interesting was the idea of stigma, and I mean that’s sort of a personal thing with HIV and AIDS. A lot of what I’ve struggled with is that idea of being seen as dirty, or different, or not okay. So, when I got involved with suicide prevention, a lot of what it is, is people that want to talk about suicide because they’re afraid of it, and I realized that so much of our ignorance is based on a lack of knowledge, a lack of communication, and it’s the same thing that sort of translates into HIV. . . I mean, for my job you don’t really need particular experience in any or life experience with suicide. Having sort of a humane outlook is pretty important.

As this young woman personally understood the effects of stigmatization, she was drawn to a profession in which she could use her experiences to help others who also struggled with the consequences of negative societal pressure.

Carpe diem

Although some participants shared the ways their HIV status led them to specific professions, a few (four of 35) explained how it pushed them to pursue their aspirations in a more general sense. In discussing the factors that drove him to obtain a degree in business management, a 20-year-old male shared,

If anything it actually makes it a lot easier and it’s probably why I’m so dedicated to my one vision because I lived a very, very delicate life my whole life. I’m always very sheltered by my parents. Being told that I’m living with a terminal illness obviously is very scary and you kind of embrace the whole carpe diem idea.

Although this participant was well aware that his health could impede him in the future, he accepted his situation and chose to embrace the opportunities he could experience at the present time. Another 19-year-old male recounted how acceptance of his disease afforded him a positive mentality that ultimately pushed him to strive for success:

It helps me gain the right sense of peace and also with everything that goes along with being HIV positive. You have to have this acceptance of a lot of things but also the process to know that you can do better than just accepting what you are and moping the rest of your life.

Discussion

This study’s aim was to examine the career aspirations of AYA with PHIV and the perceived impact of HIV on their career plans. Findings suggest that both emotional and informational support from family members was instrumental to the future pursuits of AYA. Specifically, they were able to identify the skills and characteristics of participants and guide them toward professions or endeavors that would best suit them. Participants also received continued, positive reinforcement from clinicians who inspired them to pursue their goals. Medical providers often helped AYA find ways to transform their interests and passions into realistic goals by identifying sources of financial support, academic assistance, and professional development. They also encouraged adherence to medications, echoing previous research on the effects of patient–provider relationships and adherence for PLWHA (Schneider et al., 2004). The current study expands upon past research as it demonstrates that providers not only encourage adherence but also effectively frame these behaviors as a means by which AYA with HIV can maintain functionality to achieve academic and professional goals.

In addition, AYA felt comfortable seeking encouragement and guidance from providers regarding their personal trajectories, resumes, and skill-building opportunities. Previous literature details how career counselors as well as employment programs conducted through AIDS Service Organizations (ASOs) assist adults with similar tasks (Barrio & Shoffner, 2005; Dahlbeck & Lease, 2010; Dyer et al., 2006; Trujillo, 2010). Trujillo (2010) posited that Constructivist theory, in which an “understanding of a person’s life story can help one begin to comprehend a person’s career choice,” is applicable to career counselors who must consider the lived experiences of PLWHA to best guide them (p. 53). It is reasonable to suggest that this Constructivist approach is relevant to the relationships between providers and patients, as providers gain a unique understanding of their patients’ personal lives, interests, and their physical abilities. This is especially true for AYA with PHIV, many of whom are still receiving care from pediatric or adolescent infectious disease providers. Consequently, clinicians can be uniquely effective in aiding AYA with PHIV, as they use their extensive medical and personal knowledge of a patient as a lens by which to guide them through career-oriented tasks.

Many AYA did not feel that their HIV status had a significant impact on their future professional lives confirming recent research in Europe that HIV had a minimal effect on lives of youth living HIV and most held positive expectations for adulthood (Funck-Brentano et al., 2016). Some had come to this realization over a period of time, slowly rejecting the feeling that they were limited by their illness. Although some offered no explanation as to why their HIV status did not affect them, others reasoned that strong adherence to medication allowed them to manage their illness and reduce its influence on their careers or jobs. This contrasts with previous research, which suggests that regular adherence to HAART medications and other treatments can cause consistent side effects that make it difficult for PLWHA to attend work regularly (Dahlbeck & Lease, 2010). Others explained that the physical and emotional toll of the disease itself made it challenging to pursue employment. The difficulties involved in maintaining a consistent schedule and navigating the unpredictability of illness negatively affected the mental health and motivation of AYA. Findings add to prior work regarding the physical and emotional barriers that discourage work participation for PLWHA (Presnell, 2006; Rodger et al., 2010). Participants who wanted to pursue careers that required physical contact with others, such as nursing or police work, expressed fears of accidentally transmitting HIV to others.

Previous research confirms that adults with HIV/AIDS have similar concerns (McGoldrick, 2012). Our study delved further into this phenomenon revealing that the possibility of transmission was taken seriously but did not entirely change AYA’s determination to work in their desired careers. Overall, this indicates how many young adults with PHIV embody a readiness to engage in problem solving and maintain a strong commitment to their goals.

Some participants explained that their condition compelled them to utilize their experience with HIV by finding outlets and volunteer opportunities through which they could share their story to humanize the disease as well as increase prevention efforts. This finding is congruent with existing literature that details the ways PLWHA use testimonial activism and advocacy to reverse negative stigma surrounding the disease, promote social inclusion, and provide an accurate portrayal of the disease in everyday life (Baumgartner & Niemi, 2013; Decoteau, 2008). AYA also discussed how they used their experience navigating the stigma associated with HIV to help other stigmatized groups, a phenomenon that has been documented by previous research (LeBel, 2008).

Although some participants recounted how their HIV status influenced them to follow specific career options, others noted the ways that their condition generally motivated them to pursue their professional goals. These AYA refused to let their disease discourage them. On the contrary, recognition and acceptance of their HIV status drove them to see themselves outside of a “sick role” and gain the confidence to seek the opportunities they had envisioned. Some experienced a shift in self-conceptualization, as AYA who had previously considered themselves “dirty,” “limited,” or unable to work because of their condition instead began to view their personal experience with HIV as an asset to their own pursuits. Tsarenko and Polonsky (2011) observed a similar identity transition in older adults with HIV, asserting that such a transition can often promote social engagement. Our study demonstrated that this can also occur at an earlier age and may compel younger adults living with HIV to participate in civic and societal engagement through employment.

Limitations

Study findings should be considered in light of several limitations. First, participants were linked to consistent care and were recruited from the Southeastern region of the United States, which may affect the generalizability of results. In addition, this study did not analyze the socioeconomic status of participants and their level of education. Furthermore, as a cross-sectional study, there were no follow-up questions to determine how AYA pursued their goals. Data were qualitative and self-reported.

Despite these limitations, this project sheds light on the career aspirations of AYA with PHIV and the ways in which they are impacted by their HIV status. In particular, rehabilitation counselors should continue to hold regular conversations with AYA about their long-term career aspirations. It is crucial to recognize that there is variability in the level of illness impairment among these patients, which in turn can influence the barriers to employment with which an individual must contend. Particularly, counselors and providers, who act in advice-giving roles, should be prepared to create specific strategies for AYA who are interested in professions in which there is a risk of transmission. Future research is needed to gain greater insight into the ways this group confronts these and other barriers in the context of employment settings. Although many AYA looked to adherence as a way to prevent disease-related challenges, it is not known what kinds of accommodations patients need in a work environment to address concerns regarding transmission as well as the physical and emotional toll of their illness.

In addition, rehabilitation counselors can capitalize on the relationships that AYA with PHIV have with their providers, as pediatric and adolescent care team members are in a unique position to offer support and advice regarding career choices. AYA should not only be encouraged to build upon existing networks with providers and family members but also create these systems within employment settings. Little is known about the ways in which AYA with PHIV in these environments access and establish social supports that are conducive to self-management practices, the acquisition of accommodations, or professional success. This is a particularly important avenue for future research as the formation of support for attending to disease related needs requires disclosure, a process that is fraught with challenges related to stigma, shame, and self-consciousness.

Finally, it is important to note that several AYA struggled with feelings of worthlessness, but eventually used their experiences living with HIV to construct a positive narrative. Some found a sense of purpose when involved in activism or other outlets in which they could engage their personal experience with HIV to connect with others, while others used their disease status to motivate themselves toward reaching goals that had once seemed unattainable. Rehabilitation counselors and providers should encourage AYA to explore the reality of living with HIV in a way that allows for honest reflection about disease-related hardships and the ways they view themselves in light of these challenges. Furthermore, they should work to help AYA understand that they are not limited in capacity, nor confined to play a “sick role,” but rather that they are equipped with unique perspectives and gifts that can transcend an HIV diagnosis.

Footnotes

Acknowledgements

We would like to thank the adolescents and young adults who shared their stories with us as well as Jamie Albright who helped interview participants.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: We thank Elon University Faculty Research and Development, Elon College Fellows, and the Lumen Prize for funding.

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