US Provider Perceptions of Differences in the Sexual and Reproductive Health Needs of Adolescents with Perinatally Acquired and Behaviorally Acquired HIV: A Mixed Methods Study

Abstract

This study explores health care providers' perceptions of similarities and differences in the sexual and reproductive needs of adolescents with perinatally acquired HIV (PHIV) and behaviorally acquired HIV (BHIV). Interviews (n = 13) and online surveys (n = 46) were completed by medical and social service providers (n = 30, n = 29, respectively) who care for adolescents with HIV. Eligible providers were recruited using snowball sampling. Responses to open-ended questions were coded for emergent themes. Sixty-eight percent of participants perceived differences in the sexual and reproductive health needs of adolescents with PHIV and BHIV. Differences included factors related to psychosocial, sexual, and medical needs. Providers believed adolescents with PHIV had integrated their diagnosis into their identity, were more adept at communicating with providers, and were more sexually cautious than youth with BHIV. Providers perceived adolescents with BHIV as more comfortable discussing sex-related issues, and suggested youth with PHIV were more comfortable accessing health care. Adolescents with PHIV were thought to have complex medical histories/treatment and greater knowledge of illness/medications. Existing research on adolescent-reported sexual and reproductive health knowledge and experiences in care suggests that provider and adolescent perspectives do not always align. Mode of transmission may provide some information about psychosocial functioning and sexual behavior. However, assumptions about sexual and reproductive health needs based solely on mode of transmission may contribute to gaps in sexual and reproductive health care. Future research is needed to examine whether these differing perspectives indeed lead to discrepancies in the care provided to adolescents with HIV.

Introduction

HIV has largely transformed from a terminal illness to a chronic illness among individuals who have access and adhere to antiretroviral medication.¹ These advances in treatment and increased life expectancy pose novel issues for those who have lived with HIV long term. Individuals with perinatally acquired HIV (PHIV), in particular, contend with the unprecedented experience of entering adolescence and young adulthood having lived with HIV for their entire lives. Moreover, an increasing number of adolescents are newly diagnosed with behaviorally acquired HIV (BHIV: acquired through sexual behavior or IV drug use).^2,3 Adolescents with HIV may experience higher susceptibility to psychiatric comorbidities and opportunistic infections.^4,5 Nonetheless, just like their healthy counterparts, adolescents and young adults with PHIV and BHIV face the normative developmental tasks of sexual exploration and intimate relationship development, while concurrently coping with HIV-related stressors.

Health care providers are in a unique position to offer sexual and reproductive health care tailored to adolescents and young adults' developmental stage and HIV status. Research also suggests that appropriate sexual and reproductive health education may contribute to better health outcomes among adolescents in general.⁶ However, findings indicate that sexual and reproductive health education of youth with HIV is frequently limited to information regarding pregnancy and HIV transmission prevention, with less attention paid to the process of implementing safer sex practices, for example.^7,8 Moreover, research has demonstrated that adolescents and young adults with PHIV and BHIV may have different psychosocial and health care needs, as indicated by clinically meaningful health and behavioral outcome differences between the two populations.^9,10 However, limited work has addressed differences in sexual and reproductive health needs related to mode of HIV acquisition.^11,12 The current study explores health care providers' perceptions of similarities and differences in the sexual and reproductive health needs of adolescents and young adults with PHIV and BHIV.

As a function of the increased availability and efficacy of antiretroviral drugs in the United States, the risk of mother-to-child transmission (MTCT) has been drastically reduced.¹³ Relatively few cases of PHIV have been observed in the past decade in high resource countries, however, a sizeable group of young people born with HIV before effective treatments were widely accessible are now reaching adulthood. Despite the success of antiretroviral medication in preventing MTCT and improving survival of individuals with HIV, behavioral transmission of HIV has not declined to the same extent. Adolescents and young adults aged 15–24 comprise 21% of all new HIV diagnoses in the United States.³ New infections among adolescents with BHIV are disproportionately represented among young men who have sex with men, racial/ethnic minorities and people of lower socioeconomic status.^3,14

Adolescents living with PHIV and BHIV may have unique sexual and reproductive health needs which include emotional and educational support regarding medication adherence, prevention of transmission, and disclosure.^15

–19 An additional challenge facing adolescents with HIV is the transition from pediatric to adult care, which can be a difficult change associated with decreased medication adherence, increased mortality, and poor engagement with new providers.^20,21 Young people born with HIV were often parented by one or two adults infected with HIV, or were orphaned, fostered, or adopted at some point during their childhood, factors that influence their own childbearing intentions, and parenting experiences.^22,23 Adolescents and young adults with PHIV reported that messages of secrecy expressed by caregivers in their childhood had an enduring influence on their comfort disclosing their HIV status to others.^24,25 Biological mothers typically discouraged their adolescent from disclosing her/his HIV status to others due, in part, to the secondary disclosure of her own HIV status.^26,27 Disclosure to sexual partners for adolescents with HIV, regardless of transmission route, has been associated with fear of rejection and may stand as a barrier to exploring close intimate relationships with others.^28,29

The current, mixed-methods study aims to address gaps in the literature regarding differences in sexual and reproductive health needs of PHIV and BHIV adolescents from the perspective of health care providers.

Methods

Participants

Purposive snowball sampling was used to recruit medical and social service providers who offered care to adolescents with HIV.

Phase 1

Hour-long audio-recorded interviews were conducted with clinicians and researchers who attended a think tank at the National Institutes of Health focused on sexual and reproductive health among adolescents with HIV. Individual interviews were conducted after the think tank, and participants were associated with pediatric or adolescent infectious disease outpatient clinics in tertiary care medical centers in the southeastern United States. Questions were adapted from Akers et al. and included questions specific to the sexual and reproductive health needs of PHIV and BHIV youth.³⁰ All invited participants completed the interview and received a $20 gift card for participation. Interviews were conducted by Author 2, who was trained in qualitative interviewing, and subsequently transcribed by a professional transcription service.

Phase 2

Participants who were interviewed in Phase 1 of the study were asked to forward a link to an online survey to their colleagues who also offered care to adolescents living HIV. Participants were excluded from analyses if they did not respond to the primary study question (“Do you perceive differences in the sexual and reproductive health needs of adolescents who have PHIV versus those who have BHIV?”), if they reported no contact with individuals with PHIV or BHIV, or if they practiced outside of the United States. Of the 68 individuals who started the online survey and provided consent, 46 providers with experience caring for adolescents with HIV in the United States were included in the current study. Half of those included in Phase 2 analyses practiced in settings in the southeastern US (n = 23), while others practiced in northern (n = 10), southwestern (n = 5), or western regions (n = 8). Survey participants were entered into a drawing to receive one of four $50 gift cards in appreciation of their time. This study was approved by the primary author's Institutional Review Board.

Coding and analyses

Transcripts and qualitative data from online surveys were reviewed for accuracy and entered into ATLAS.ti version 16.0, a qualitative data analysis software program. Following the traditions of qualitative analyses, the investigators independently read the transcripts and responses to open-ended questions from survey participants in their entirety to identify major themes.³¹ Next, the investigators use a process of constant comparison to group similar responses.³² As new themes emerged, codes were refined, and ultimately some categories were collapsed.³³ When discrepancies emerged, relevant excerpts were reviewed by the research team until consensus was reached. Quantitative data were entered into SPSS version 23.0 for analysis.

Results

Thirteen providers participated in semistructured interviews and 46 providers completed the online survey. See Table 1 for a breakdown of participant demographics.

Table 1.

Participant Demographics

	Interviews (n = 13) n (%)	Online survey (n = 46) n (%)
Gender
Female	12 (92)	37 (80)
Male	1 (8)	9 (20)
Race
African American	1 (8)	15 (33)
Caucasian	12 (92)	31 (67)
Education
Medical (RN, BSN, MD, PA)	6 (46)	14 (30)
Social service (MSW, BSW, PhD)	7 (54)	32 (70)

Perceived differences

Ten interviewees (76%) and 30 survey respondents (65%) perceived differences in the sexual and reproductive health needs of adolescents with PHIV and BHIV. Three primary areas of difference were found, psychosocial, sexual, and medical issues. See Table 2 for themes and subthemes.

Table 2.

Perceived Differences in the Sexual and Reproductive Health Needs of Adolescents Living with Perinatally Acquired HIV and Behaviorally Acquired HIV

• Psychosocial

○ Identity

○ Communication and disclosure

○ Anger

• Sexuality and sexual behavior

○ Level of sexual activity

○ Sexual health knowledge

• Medical

○ Disease severity

○ Illness-related knowledge

Psychosocial

Half of all participants who perceived differences cited psychosocial differences that influenced sexual and reproductive health needs. Associated subthemes included identity, communication and disclosure, and anger.

Identity

Providers felt that adolescents with PHIV and BHIV incorporated their HIV status into their overall identity differently which could, in turn, influence sexual and reproductive health care needs. Some providers felt that adolescents with PHIV were less connected to their HIV status because they lived with the illness their entire lives and no longer defined them. Some participants further suggested that adolescents with PHIV were more comfortable and desensitized to their HIV-positive status compared with their peers with BHIV, who may experience more fear related to their new diagnosis. A social service provider stated, “For the kids who were perinatally infected, they aren't as concerned about it [their HIV status] because they've been through it” (interview). Similarly, providers noted an HIV diagnosis would be more closely linked with the identity of those with BHIV, since it was something that they had faced suddenly. One social service provider explained:

It [HIV status] is harder to accept with some of them [adolescents with BHIV] than the other [adolescents with PHIV]. The ones that were born with this disease have been dealing with it longer than the ones who got the disease through behavior (interview).

On the contrary, some providers felt that, compared to those with BHIV, the identity of adolescents with PHIV was more connected to their HIV status because they had lived with it for their entire lives. These providers believed that living with HIV for an extensive period of time gave it heavier weight and meaning in an adolescent's life as indicated by the quotes below:

Perinatally-infected [adolescents] have a complex psychosocial legacy of transmission and their own perceptions of self (survey). –Social service provider

The [perinatally-acquired]…know how they got it and know what it's meant in their life versus the sexually-acquired, I don't think they really get the gravity of being raised with it, being an infant coming into your youth (interview). –Social service provider

Communication and disclosure

Participants believed adolescents with PHIV were more reluctant to communicate with providers regarding their sexual and reproductive health needs, while their BHIV peers were more open to communicating and advocating for themselves. Some felt that the parents of youth with PHIV influenced their adolescents' comfort in discussing sexual and reproductive health topics:

For kids who got [HIV] perinatally, I think when they find out about it, it's kind of disclosure for the parents. And I think there may be more of a reluctance by those parents to really talk about…reproductive health [and] about transmission because I think there's …that secondary disclosure…There may be a little more avoidance in talking with their kids…about their sexual health (interview). –Social service provider

In addition, the absence of parents due to death could also influence communication.

[For many youth with PHIV], their parent is deceased, and so their mothers are no longer there for them to talk about it. So they have a guardian or a person that is their mother who is not biological. And so that piece of being positive is not something they can talk about with this person (interview). –Social service provider

One social service provider explained a perception that “the perinatally infected kids seem a lot more reserved in their willingness to talk about sexual issues or sexuality, whereas… [those with behaviorally acquired HIV] are a lot more open and willing to talk about different issues….Those who have acquired it behaviorally tend to be more open to discussing reproductive and medical need” (survey). Another social service provider stated, “Those who have BHIV are more likely to…advocate for themselves for information and care” (interview). A medical provider noted, “BHIV youth much more often seek care on their own from the beginning” (survey).

Some providers also cited differences in youths' comfort with and support needed for disclosure related to mode of acquisition. For instance, one medical provider stated that “PHIV patients tend to be more guarded about disclosing, [compared to those with BHIV]” (survey). Another medical provider explained, “there is more need for disclosure support [for those with PHIV]” (interview).

Anger toward parent/partner

Anger toward a parent or partner was noted as a factor that should be taken into consideration when providing sexual and reproductive health care. In general, providers believed that adolescents with PHIV often directed resentment at their parent who transmitted HIV, while their peers with BHIV focused anger toward their sexual partner as indicated below.

[Adolescents with PHIV may have] anger or frustration [wondering] ‘why would my parent do this to me?’ versus the sexually-acquired, where…it's from a partner and you might have some anger towards that partner if you know who it is or if you don't know who it is (interview). –Social service provider

Anger towards their own parents often surfaces [for adolescents with PHIV]…because that is how they became infected (survey). –Medical provider

Sexuality and sexual behavior

One third of providers described differences related to sexuality and sexual behavior, including levels of sexual activity and sexual health knowledge.

Level of sexual activity

Many providers felt that youth with PHIV were less sexually active than their BHIV peers. “[Adolescents with PHIV] are less likely to be sexually active and may not be engaging in behaviors that put them at risk” (survey), as one social service provider indicated. Another medical provider explained, “PHIV [youth] normally have a delayed sexual debut [compared to youth with] BHIV…the ones who are behaviorally acquired are usually the ones that are more at risk for getting pregnant” (interview). Some participants suggested that those with PHIV were more fearful of their diagnosis because they knew how greatly it has affected their lives thus far, and, therefore, were worried about transmitting their HIV to a partner or child and may subsequently limit sexual activity.

Other providers felt that many providers in this field made assumptions about differing levels of sexual activity, which they felt needed to be challenged. One medical provider explained, “The automatic assumption of lack of sexual activity in youth with PHIV, compared to automatic assumption of ongoing sexual activity in BHIV, [yields differing sexual and reproductive health needs]” (survey). In addition, “the onset of sexual activity for [youth with] PHIV may be shrouded in secrecy” (survey), acknowledged a social service provider.

Sexual health knowledge

Providers believed that sexual education for adolescents with PHIV should focus on delaying their sexual debut, while education for those with BHIV should concentrate on sexually transmitted infections and pregnancy prevention. One medical provider commented, “With our perinatally infected kids, we try to educate…before sexual activity is started” (interview). Another noted,

You're starting from scratch more often with the perinatal ones, we've been following them for years…where the ones who are sexually-acquired already have had a certain level of experiences, so the context is different and the content will be different. You can preach abstinence in one case, and preaching abstinence in the other is largely futile (interview). -Medical provider

Some providers felt that adolescents with PHIV had a greater knowledge-base of sexual education because they have received health care services for a longer period of time, compared to those with BHIV. One participant noted,

The perinatally-infected girls have a little bit more education and before- planning just because they've been coming to our clinic every three months for their whole lives, whereas the sexually-acquired might not have been in any healthcare at all, all they learned was from their friends…so I would say they [need] more education (interview).

However, other providers believed that those with PHIV required more sexual health education due to their lack of experience as explained by a medical provider,

Typically, more basic sex education is needed for youth with PHIV [because] with our behaviorally-acquired, they're all pretty sexually experienced and need more safety coaching…so we kind of talk about how to really introduce condoms in your relationship and how to really talk to partners more than the whole general our approach with PHIV patients which is more ‘How is my body changing? What does this mean for me?’ (interview)

Medical

Medical differences were identified by 21% of providers. Differences included disease severity and illness-related knowledge, which they felt influenced adolescents' sexual and reproductive health needs. Providers suggested that the focus of sexual and reproductive health care for adolescents with PHIV should be different because they often have greater health issues due to their longstanding, complex drug regimens and possible illnesses. For example, one medical provider stated, “[Adolescents with PHIV have] more complex medical statuses and drug interactions with some birth control options” (survey). Another provider pointed out that “[youth with] PHIV may be more immune-compromised, and often have high resistance to new medication combinations” (survey). Another participant suggested, “at times, the [teen with] PHIV are sicker, a provider may not think about addressing their [sexual and reproductive health] needs” (interview).

Illness-related knowledge

In addition, providers reported that adolescents with BHIV have lower health literacy compared to their PHIV peers, and require more education on their medications because they usually have not been in the health care system as long as those with PHIV as indicated by the quote below:

Kids who were perinatally-infected…are used to being on medications and talking about viral loads and CD4 counts… having [medical] education reinforced for five, six years (interview). –Social service provider

In some cases, however, providers believed that adolescents with PHIV required more education on the medical advances that were not existent when they were diagnosed as a child.

Perinatally infected kids grew up in a time where they may have got messages that they weren't going to survive to get to that age or to have children or that it wasn't even going to ever be a possibility. So I think that they [adolescents with PHIV] have those extra challenges of…more education…and how things are different now (interview). –Medical provider

In addition, sexual and reproductive health needs of youth with PHIV might not be addressed due to an assumption that they would not survive childhood as explained by a medical provider, “Many [youth with] PHIV (and their families) never expected to live long enough to have sex and reproduce and so were not adequately prepared when they reached adolescence” (survey).

No difference

Approximately one third of providers did not perceive any differences in the sexual and reproductive health needs of HIV-positive adolescents related to mode of acquisition. Most providers who did not perceive differences in the sexual and reproductive health needs of HIV-positive adolescents reasoned that both groups face the same challenges of adolescence. As one medical provider noted in their survey response, “They are all like day-to-day teenagers.” Another provider underscored the similarity across groups by stating, “They're pretty much the same underneath everything, they have the same emotions, the same problems, they're going through the same stages in their lives.”

Discussion

This study explored providers' perceptions of the sexual and reproductive health needs of adolescents with PHIV and BHIV in the United States. The majority of participants in the current study believed that there were differences in sexual and reproductive health needs related to mode of acquisition. Findings suggest that there are a variety of potential narratives that providers construct about their patients related to mode of transmission that may influence their perceptions of patients' psychosocial, sexual, and reproductive health needs. While some providers noted medical differences in HIV-positive adolescents' sexual and reproductive health needs, the majority of differences identified in the needs of teens with HIV were related to demographic, behavioral, or psychosocial characteristics. It stands to reason that these beliefs might influence the nature of sexual and reproductive health care offered to patients and, subsequently, related health outcomes. Thus, the current study findings underscore the importance of exploring perceived distinctions between patient needs related to mode of acquisition.

Psychosocial

Among those who noted differences, half of the providers in the current study identified psychosocial factors related to identity, communication, and disclosure, as well as anger. Limited research has explored providers' perceptions of differences in the sexual and reproductive health needs of adolescents with PHIV versus BHIV. However, some literature sheds light on adolescents' experiences and the extent to which providers' beliefs align. First, extant literature supports participants' perceptions that there may be psychosocial differences among adolescents based upon mode of transmission. Identity was the most commonly cited subtheme, suggesting that the nature of identification with one's illness may influence the sexual and reproductive health care provided to adolescents with HIV. Indeed, previous literature suggests that acceptance of one's HIV status can affect decision-making related to sexual behavior. Consistent with previous literature, experienced health care providers indicated that those adolescents who accepted their HIV diagnosis were more likely to disclose to sex partners, regardless of transmission mode.¹⁸ Risio et al.' research on adolescents with PHIV supported the views of some participants that youth with PHIV have identities defined outside of their HIV status, as they have lived their entire lives with the illness.³⁴ Specifically, young people in their study viewed themselves as healthy and noted that HIV had little effect on their daily lives. Less is known about how youth with BHIV incorporate their HIV status into their identity, an area of potential future research.

Provider perceptions that parental views on sexuality, or the lack of a parent, may influence access to sexual and reproductive health information is also supported by previous findings. Research suggests that some parents of adolescents with PHIV resist sexuality-related conversations between adolescents and providers due to the belief that their child is too young to learn about sex.³⁵ Further, it is possible that youth with PHIV are more likely to have more parental or guardian involvement in their care given their age of acquisition. Interestingly, we did not find that participants brought up clinic-related differences despite research that providers in adolescent-centered clinics were more likely to provide basic sexual and reproductive health education compared to those in adult clinics.³⁶

Regardless of mode of transmission, it appears that anger toward a parent or infecting partner may influence adolescents' willingness to talk about sexuality and sexual risk behaviors. Consistent with the beliefs of providers in our sample, previous research has documented that topics of emotional needs and sexuality were mutually avoided by youth with PHIV and their biological mothers. Case studies have noted unresolved resentment toward mothers of those with PHIV can cause ongoing psychological distress.^37,38 Similarly, Lichtenstein et al. suggested that adolescents with BHIV need support from providers as they struggle with feelings of anger toward previous partners.³⁹ The integration of mental health services into medical care may foster increased comfort discussing sensitive topics related to sexual and reproductive health.

Previous study findings corroborate providers' perceptions regarding disclosure differences among adolescents with PHIV versus BHIV. Researchers have found that adolescents with PHIV may be less likely than those with BHIV to disclose their HIV status to friends or sexual partners.⁴⁰ Galano et al. found that adolescents with PHIV had been taught to keep their HIV a secret from an early age, making it difficult to disclose to others.⁴¹ Similarly, Fair et al. found that biological mothers and relative guardians cautioned their perinatally infected adolescent against HIV disclosure to sexual partners.²⁷ On the contrary, adolescents and young adults with BHIV often face the challenge of having to disclose their diagnosis to their parents, as well as sexual partners.⁴²

Differing views on comfort communicating about HIV with providers and sexual partners may influence the kind of care offered to adolescents. Previous research suggests that providers frequently emphasize the importance of disclosure to sexual partners and share relevant state disclosure policies.⁷ However, adolescents and young adults with PHIV report that the actual process of disclosure is rarely discussed.⁸ Regardless of transmission mode, Finocchario-Kessler et al. found that while many HIV-positive adolescents may not openly communicate about sexual health with their providers, they desire to have those conversations. Notably, participants in their study preferred that their providers to initiate conversations about sexual health.⁴³ Thus, it stands to reason that provider-initiated conversations may be one avenue to improved health outcomes among adolescents living with HIV and serve as a starting point for other conversations related to disclosure, relationships, and sexual behavior.

Sexuality and sexual behavior

Almost a third of providers who perceived differences related to mode of HIV acquisition cited factors related to sexual behavior. Existing research focused on differences in sexual behavior between adolescents with PHIV and BHIV has yielded mixed findings. Some literature supports our study participants' perceptions that adolescents with PHIV have a delayed sexual debut compared to their BHIV peers.⁴⁴ Yet, even if adolescents with PHIV are not currently sexually active, it is likely that the majority will eventually have sexual experiences. Thus, sexual and reproductive health education for adolescents with PHIV needs to be comprehensive in nature.⁴⁵ Partly aligned with participants' perceptions, research suggests that adolescents with PHIV may be less knowledgeable about sexual and reproductive health.⁴⁶ Echenique et al. found young women with PHIV and BHIV had similar levels of knowledge related to conception health literacy and communication with providers.⁴⁷ However, those with BHIV had higher levels of contraception usage indicating differences in behavior. On the contrary, Renaud et al. found few sexual behavior risk differences between youth with PHIV and those with heterosexually acquired HIV.¹¹

Medical

Providers' perceptions of differing medical needs and knowledge of illness related to mode of acquisition is consistent with extant literature. Research suggests that adolescents with PHIV often have more HIV-related medical complications and complex drug regimens than their counterparts due to life-long treatment.¹⁰ As a result, a need to attend to more pressing medical issues might limit the time that providers have to spend on topics such as sexual and reproductive health.⁷ It is important to point out that people living with poorly controlled HIV also tend to be more susceptible to acquiring other infections, pointing to the relevance of SRH education even among sicker patients.

Provider assumption that youth with PHIV have higher levels of illness-related knowledge is inconsistent with some previous research, although research on the health literacy of adolescents with HIV has produced mixed findings. For instance, Murphy et al. found relatively high levels of health literacy among adolescents with HIV, regardless of HIV transmission route.⁴⁸ On the contrary, Fair et al. found low levels of knowledge of disease markers (CD4 count and viral load) within a sample of 40 adolescents with PHIV.⁴⁹ Notably, knowledge of disease markers was positively associated with quality of patient–provider interactions. This suggests that rapport building between adolescents and their medical provider may be a vehicle to promote health literacy.

No difference

Not all providers in our study perceived differences in the sexual and reproductive health needs of adolescents and young adults with HIV related to mode of transmission. Most of the providers who did not perceive any differences believed that adolescents with HIV were just like “everyday teenagers” in terms of their sexual exploration, questions regarding their identity, and desires for their future.⁵⁰ Therefore, some participants felt that while HIV-positive adolescents do have unique needs and challenges, sexual and reproductive health care should also acknowledge similarities with typically developing adolescents. However, previous literature suggests that there are differences in the clinical needs of adolescents with PHIV and those with BHIV.^15,17,18,51 Providers may need to understand possible group level differences and seek to gather specific information from their individual patient.

Limitations

Our findings must be considered in light of several limitations. Because purposive snowball sampling was used, the sample of providers may not be representative of providers who serve HIV-positive adolescents across the United States, nor outside of the country. In addition, our sample was composed of providers with different roles (e.g., social workers and medical doctors). However, due to sample size, we were limited in our ability to investigate whether provider types are associated with perceptions of patient sexual and reproductive health needs. Provider roles often dictate amount of time a provider spends with a patient, and may influence the nature of the patient–provider relationship, thereby influencing providers' beliefs about patients' behavioral needs. Future research should explore whether provider perceptions and care delivery differ as a function of their role (i.e., medical versus social service). Further research is also needed on clinic versus individual-level provider characteristics that influence the provision of sexual and reproductive health care and education. Still, a notable strength of our study is that the diversity of provider types represented in our study reflects the common interdisciplinary structure of HIV care teams.

In the current study, we were also limited in our ability to determine whether provider perceptions of transmission-related differences occurred at the individual or clinic level. Future research is needed to better understand the factors driving perceptions of the needs of adolescents with HIV related to mode of acquisition. It is important to note that in the context of interdisciplinary HIV care teams discrepant individual level perceptions of adolescents' needs may present obstacles to the provision of comprehensive sexual and reproductive health care.

Implications and Conclusions

Notwithstanding its limitations, our findings shed light on care providers' perspectives on the sexual and reproductive health needs of adolescents with PHIV and BHIV in the United States. We found that in our sample, a majority of providers perceived differences in sexual and reproductive health needs as a function of mode of acquisition. While some provider perceptions aligned with current knowledge about young people's sexual and reproductive health knowledge and service provision, some beliefs diverged from current research findings.

Notably, it stands to reason that provider views of adolescents' understanding of sexual and reproductive health-related knowledge and care needs could influence the nature and frequency that sexual and reproductive health information is shared. Specifically, our findings point to the possibility that care may be influenced by beliefs about needs related to mode of acquisition. Grieb et al.'s research underscores the importance of the clinic environment, particularly the relationships with health care team members, as a form of social support.⁵² Their findings indicated that youth with HIV, regardless of transmission mode, experienced social embeddedness with their health care teams receiving instrumental, emotional, and informational assistance. Given the importance of the patient–provider relationship, an extension of the current study findings would be to examine whether differing perspectives indeed lead to discrepancies in the care provided to adolescents with HIV.

It may be useful to build upon standards of care for typically developing populations and then integrate the specialized needs of adolescents with HIV, regardless of mode of acquisition, to provide a comprehensive approach to sexual and reproductive health care that accounts for the diversity of experiences of teens with HIV. Sherr et al.' research focused on the mental health of perinatally and behaviorally infected adolescents and young adults revealed clinically meaningful differences between the two populations yet cautioned, “Interventions based on assumptions of sexual behavior may misfire” (p. 99).⁹ The authors called for a tailored approach to best address the needs of subpopulations.

Providers' views on differences in the needs of adolescents with HIV should be corroborated with direct patient assessments. Implementation of standardized protocols for sexual and reproductive health care and education may reduce inconsistencies in care and in turn, provide a basis for a personalized “roadmap” of an adolescent's needs.⁵³ Standardized assessment might include disclosure experiences, sexual behavior, condom self-efficacy, as well as basic knowledge of sexual health and contraception. Use of social media to share consistent health-related information across a variety of platforms, along with appointment reminders, may improve care engagement and viral suppression.⁵⁴ Assurance of confidentiality will increase the likelihood that adolescents will engage in sensitive topics with their care providers.⁵⁵

Health care and psychosocial providers are in a unique position to promote the well-being of this population as they mature into adulthood. Adolescents with PHIV and BHIV have illness-specific sexual and reproductive health needs. Comprehensive care that allows for holistic view of the adolescent is called for. Finally, it is also important to keep in mind that, as noted by providers in our study, teens with HIV contend with the normative challenges of adolescence—forming romantic relationships, engaging in sexual behavior, and looking to the future.

Footnotes

Acknowledgments

We express our deep gratitude to the providers who participated in this research.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

We thank the Elon University Faculty Research and Development Committee, the Undergraduate Research Program, the Lumen Prize, and the Elon College Fellows program for providing funding.

References

Deeks

, Lewin

, Havlir

. The end of AIDS: HIV infection as chronic disease. Lancet, 2013; 382:1525–1533.

Brady

, Oleske

, Williams

, et al. Declines in mortality rates and changes in causes of death in HIV-1-infected children during the HAART era. J Acquir Immune Defic Syndr, 2010; 53:86–94.

Centers for Disease Control and Prevention. HIV Among Youth. 2016. Available at: www.cdc.gov/hiv/group/age/youth/index.html (Last accessed August 26, 2019 ).

Evangeli

Mental health and substance use in HIV-infected adolescents. Curr Opinion HIV AIDS, 2018; 13:204–211.

Mellins

, Brackis-Cott

, Leu

, et al. Rates and types of psychiatric disorders in perinatally human immunodeficiency virus-infected youth and seroreverters. J Child Psychol Psychiatry, 2009; 50:1131–1138.

Manlove

, Fish

, Moore

. Programs to improve adolescent sexual and reproductive health in the US: A review of the evidence. Adolesc Health Med Ther, 2015; 6:47–79.

Albright

, Fair

. Providers caring for adolescents with perinatally-acquired HIV: Current practices and barriers to communication about sexual and reproductive health. AIDS Patient Care STDS, 2014; 28:1–7.

Fair

, Albright

, Houpt

. Self-reported sexual and reproductive health information/services received by adolescents and young adults with perinatally-acquired HIV: What are their needs?. Vulnerable Child Youth Stud, 2016; 11:78–88.

Sherr

, Cluver

, Toska

, He

. Differing psychological vulnerabilities among behaviourally and perinatally HIV infected adolescents in South Africa—Implications for targeted health service provision. AIDS Care, 2018; 30:92–101.

10.

Sharer

, Fullem

Transitioning of care and other services for adolescents living with HIV in sub-Saharan Africa.

Arlington, VA: USAID's AIDS Support and Technical Assistance Resources. 2012, AIDSTAR-One.

11.

Renaud

, Bocour

, Tsega

, et al. Do sexual risk behaviors differ between heterosexual youth infected with HIV perinatally versus sexually?. J Adolesc Health, 2013; 53:222–227.

12.

Elkington

, Bauermeister

, Brackis-Cott

, et al. Substance use and sexual risk behaviors in perinatally human immunodeficiency virus-exposed youth: Roles of caregivers, peers and HIV status. J Adolesc Health, 2009; 45:133–141.

13.

Nesheim

, Harris

, Lampe

. Elimination of perinatal HIV infection in the USA and other high-income countries: Achievements and challenges. Curr Opin HIV AIDS, 2013; 8:447–456.

14.

Hans

, Spiegel

, Futterman

, et al. Adolescents and HIV: Prevention and clinical care. Curr HIV/AIDS Rep, 2009; 6:100–107.

15.

Gay

, Hardeen

, Croce-Gallis

, Hall

. What works to meet the sexual and reproductive health needs of women living with HIV/AIDS. J Int AIDS Soc, 2011; 14:56.

16.

Gillard

, Roark

. Support for basic psychological needs in the context of HIV disclosure for older youth. Child Youth Serv Rev, 2013; 35:102–111.

17.

Hughes

, Hope

, Nwokolo

, et al. Meeting complex needs: Young people with HIV in London. HIV Med, 2013; 14:145–152.

18.

Leonard

, Markham

, Bui

, et al. Lowering the risk of secondary HIV transmission: Insights from HIV-positive youth and health care providers. Perspect Sex Reprod Health, 2010; 42:110–116.

19.

Persson

, Newman

. When HIV-positive children grow up: A critical analysis of the transition literature in developed countries. Qual Health Res, 2012; 22:656–667.

20.

Zanoni

, Mayer

. The adolescent and young adult HIV Cascade of care in the United States: Exaggerated health disparities. AIDS Patient Care STDS, 2014; 28:128–135.

21.

Fair

, Sullivan

, Dizney

, Stackpole

. “It's like losing a part of my family”: Transition expectations of adolescents living with perinatally acquired HIV and their guardians. AIDS Patient Care STDS, 2012; 26:423–429.

22.

Mellins

, Malee

. Understanding the mental health of youth with perinatal HIV infection: Lessons learned and current challenges. J Int AIDS Soc, 2013; 16:1–19.

23.

Fair

, Allen

, Trexler

, et al. The experiences of young parents with perinatally-acquired HIV. AIDS Patient Care STDS, 2017; 31:479–485.

24.

Fair

, Allen

, Trexler

, et al. “When should I tell?”: Perspectives on disclosure to their children among parents with perinatally acquired HIV. Front Public Health, 2016; 4:140.

25.

Proulx-Boucher

, Fernet

, Blais

, et al. Stigma management trajectories in youth with perinatally acquired HIV and their families: A qualitative perspective. AIDS Behav, 2017; 21:2682–2692.

26.

Gibbs

, Melvin

, Foster

, Evangeli

‘I don't even know how to start that kind of conversation': HIV communication between mothers and adolescents with perinatally acquired HIV. J Health Psychol, 2018 [Epub ahead of print]; DOI: 10.1177/1359105318755544

27.

Fair

, Albright

, Clark

, Houpt

. “I definitely want grandbabies”: Guardians of adolescents with perinatally-acquired HIV reflect on dating and childbearing. Fam Syst Health, 2016; 34:378–385.

28.

Fair

, Albright

. “Don't tell him you have HIV unless he's ‘the one’”: Romantic relationships among adolescents and young adults with perinatal HIV infection. AIDS Patient Care STDS, 2012; 26:746–754.

29.

Koenig

, Pals

, Chandwani

, et al. Sexual transmission risk behavior of adolescents with HIV acquired perinatally or through risky behaviors. J Acquir Immune Defic Syndr, 2010; 55:380–390.

30.

Akers

, Gold

, Borrero

, et al. Providers' perspectives on challenges to contraceptive counseling in primary care settings. J Womens Health, 2010; 19:1163–1170.

31.

Patton

Qualitative Evaluation and Research Methods.

Thousand Oaks, CA: Sage; 1990.

32.

Smulowitz

. Constant comparison. The international encyclopedia of communication research methods. Wiley Online;. 2017. Available at: https://onlinelibrary-wiley-com-443.web.bisu.edu.cn/doi/10.1002/9781118901731.iecrm0041 (Last accessed August 26, 2019 ).

33.

Strauss

, Corbin

Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Newbury Park, CA: Sage, 1990.

34.

Risio

, Ballantyne

, Read

, Bendayan

.“HIV isn't me…”: HIV+ adolescents' experiences in a positive context of support and treatment. AIDS Care, 2011; 23:694–499.

35.

Fair

, Culy

, Albright

. Factors that influence sexual and reproductive health information offered to adolescents with perinatally acquired HIV: An ecological analysis of provider perspectives. J Assoc Nurses AIDS Care, 2018; 29:822–834.

36.

Moore

Adolescents behaviorally and perinatally infected with HIV, the intersection of sexual and reproductive health services and transition of care: Are their needs being met?. J Adolesc Health, 2015; 56:S53.

37.

Williams

, Ferrer

, Marlene

, et al. Growing up with perinatal human immunodeficiency virus-A life not expected. J Clin Nurs, 2017; 26:4734–4744.

38.

Childs

, Maxwell

. Psychosocial snapshots: Perinatally infected HIV+ adolescents' sexual behaviors and pregnancies. Soc Work Health Care, 2009; 48:777–797.

39.

Lichtenstein

, Rodgers

, Marefka

. Two vignettes of adolescent sexual disclosure: Guidance for HIV clinical practice. J Infect Prev, 2017; 18:10–16.

40.

Peele

, D'Angelo

, Chandwani

, et al. Determinants of HIV serostatus self-disclosure among adolescents participating in the Adolescent Impact Study. J Adolesc Health, 2012; 50:S91–S92.

41.

Galano

, Ribeiro

, Regina

, et al. Costs and benefits of secrecy: The dilemma experience by adolescents seropositive for HIV. AIDS Care, 2017; 29:394–398.

42.

Thoth

, Tucker

, Leahy

, Stewart

. Self-disclosure of serostatus by youth who are HIV-positive: A review. J Behav Med, 2014; 37:276–288.

43.

Finocchario-Kessler

, Dariotis

, Sweat

, et al. Do HIV-infected women want to discuss reproductive plans with providers, and are those conversations occurring?. AIDS Patient Care STDS, 2010; 24:317–323.

44.

Bauermeister

, Elkington

, Robbins

, et al. A prospective study of the onset of sexual behavior and sexual risk in youth perinatally acquired with HIV. J Sex Res, 2012; 49:413–422.

45.

Crankshaw

, Matthews

, Giddy

, et al. A conceptual framework for understanding HIV risk behavior in the context of supporting fertility goals among HIV-serodiscordant couples. Reprod Health Matters, 2012; 20:50–60.

46.

Segurado

, Paiva

. Rights of HIV positive people to sexual and reproductive health: Parenthood. Reprod Health Matters, 2007; 15:27–45.

47.

Echenique

, Rodriguez

, LaCabe

, et al. Behaviorally and perinatally HIV-infected young women: Targets for preconception counseling. AIDS Care, 2016; 29:372–377.

48.

Murphy

, Phebe

, Narr-King

, et al. Health literacy and antiretroviral adherence among HIV-infected adolescents. Patient Educ Couns, 2010; 79:25–29.

49.

Fair

, Sullivan

, Dizney

, Stackpole

. Knowledge of disease markers and quality of patient-provider interaction among adolescents with perinatally-acquired HIV: Implications for transition to adult care. Vulnerable Child Youth Stud, 2014; 9:167–173.

50.

Levine

, Aaron

, Foster

. Pregnancy in perinatally HIV-infected adolescents. J Adolesc Health, 2006; 38:765–768.

51.

Hindin

, Christiansen

, Ferguson

. Setting research priorities for adolescent sexual and reproductive health in low-and middle-income countries. Bull World Health Organ, 2013; 91:10–18.

52.

Grieb

, Kerrigan

, Tepper

, et al. the clinic environment as a form of social support for adolescents and young adults living with HIV. AIDS Patient Care STDS, 2018; 32:208–213.

53.

Santelli

, Klein

, Song

. Discussion of potentially sensitive topics with young people. Pediatrics, 2019; 143:e20181403.

54.

Tanner

, Song

, Mann-Jackson

, et al. preliminary impact of the weCare social media intervention to support health for young men who have sex with men and transgender women with HIV. AIDS Patient Care STDS, 2018; 32:450–458.

55.

Gilbert

, Rickert

, Aalsma

. Clinical conversations about health: The impact of confidentiality in preventive adolescent care. J Adolesc Health, 2014; 55:672–677.