“It's Like Losing a Part of My Family”: Transition Expectations of Adolescents Living with Perinatally Acquired HIV and Their Guardians

Introduction

M edical advances have greatly improved the prognosis of youth with perinatally acquired HIV (PHIV) who are now living into young adulthood. ¹ The maturing population of youth with PHIV presents new challenges to infectious disease care providers who are confronted with the task of facilitating the transition from pediatric to adult care. ^2,3 According to the American Academy of Pediatrics, the primary aim of the transition for youth with special health care needs is to “maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood.” ^{4 (p1304)} Serious medical and public health consequences may result when youth living with HIV do not transition successfully, including declines in immune functioning and the increased transmissibility of HIV associated with higher viral loads. ^{5 –7} Therefore, adolescents must be adequately prepared to maximize the potential for transition success.

Transition to adult care can be an emotionally challenging process, especially for those struggling with a chronic or terminal illness. Many adolescents with PHIV have received medical care for their illness from pediatric providers since they were very young and value the relationships they have with their clinicians. The transition can be a taxing and stressful process due to the need to establish new relationships with providers, while adjusting to the increased expectations of patient responsibility present in adult clinics. ^2,6,8 The transition to adult care is unavoidable and of critical importance for youth with HIV infection. It is important to understand the expectations of youth and their families on the cusp of this process to inform interventions designed to facilitate a successful transition.

While research focused on the transition of youth with HIV to adult care is limited, a growing number of studies have examined aspects of this transition. The majority of research has focused on patient perspectives during or after transition to adult care. Miles et al. ⁹ conducted one of the early studies on the transition experiences of a small group of adolescents with HIV. While most of the adolescents felt the transition went smoothly, several reported discomfort being around other adult patients and sadness over lost relationships with the pediatric staff.

Wiener et al. ³ identified barriers to transition and transition readiness of HIV-infected youth and caregivers who, due to the closure of a pediatric program, were forced to transition to adult- or community-based care. Poor access to social work services was viewed as a barrier to an effective transition. Similarly, Vijayan et al. ⁷ investigated challenges to transition among a group of adolescents with HIV, their caregivers, and pediatric medical providers. Results suggested that stigma and concerns over disclosure led adolescents to keep their diagnosis a secret and to distrust those with whom they were not familiar, including potential adult medical providers. Wiener et al. ⁶ also studied barriers for transitioning from pediatric to adult care among 42 young adults with HIV who already received care in an adult setting. Their findings indicated that almost half of their sample found the transition more difficult than anticipated, citing concerns over continuity of care and difficulty managing the complex paperwork and referral systems.

A limited number of investigators and clinicians have developed interventions designed to improve the likelihood of a successful transition to adult care. Campbell et al. ^10,11 investigated the impact of participating in a program designed to facilitate the transition, not only to adult care, but to adulthood in general among youth with PHIV. Finally, several researchers have focused exclusively on provider views of transition including the best practices of transition in transitioning youth with HIV to adult care ¹² as well as indicators of a successful transition. ¹³ Best practices for transition include promoting medical independence, good communication between providers and addressing system-level concerns such as access to insurance. Indicators of a successful transition consist of both behavioral (e.g., keeping appointments, medication adherence) and well as biological markers (e.g., low or undetectable viral loads).

Limited research has explored the expectations of youth prior to the transition to adult care or those of their guardians. Expectations of the impending move to adult care may influence the success of the actual transition. Furthermore, the study of expectations can help shape interventions designed to address concerns and possible misconceptions in the hopes of promoting a smooth transition to adult care. This study examines the perspectives of youth on the cusp of transition yet who still receive pediatric care and their guardians.

Methods

Results

Through semistructured interviews, this study explored the expectations for transition among adolescents with perinatal HIV infection and their guardians. Table 1 summarizes the demographic characteristics of the adolescents (mean age, 17.3 years; range, 15–21 years). The majority of adolescents were female (57.5%), African American (90%), currently enrolled in high school (57.5%), and were prescribed highly active antiretroviral therapy (HAART; 87.5%). The mean CD4 count was 657.16 6 cells/mm³ (range, 12–14996 cells/mm³). Seventeen adolescents (42.5%) had undetectable viral loads (HIV plasma RNA less than 48 copies per milliliter; range undetectable – 30,700 copies per milliliter). Relatively few reported clinically meaningful symptoms of depression (10%) and anxiety (12.5%). Patient reported substance abuse in the past 30 days was not collected. However, patient substance abuse is regularly evaluated during routine psychosocial assessments performed by the clinic social worker (author 3). No referrals for further evaluation of substance use were made among the participants. Finally, rates of pregnancy among participants were low. Only one female was ever pregnant and no participants had a child at the time of the study.

Eighteen guardians also participated in the study. Table 2 presents the demographic characteristics of the guardians interviewed. The overwhelming majority were female (94.4%) and African American (83.3%). Most had completed high school (27.8%) and almost 45% either attended or graduated from college. The mean age was 58.1 years (range, 37–83). The majority of guardians were parents (27.7% biological parents, 38.8% adoptive parents) of the adolescent participants and few were working at the time of the interview (16.7%). All biological parents were HIV positive. Only three guardians whose adolescent was 18 years or older participated indicating that many older adolescents come to the clinic without their guardian.

Please see Table 3 for a summary of identified themes. Many adolescents had difficulty articulating what they expected as they transitioned from pediatric to adult care. Indeed, the majority were unable to indentify benefits or concerns associated with the move. Statements such as “I don't know” and “I have no clue” illustrate the general lack of awareness that adolescents reported about transition.

Guardians were generally aware that their child would one day have to transition to adult care. However, many guardians held a passive view of transition. For example, several guardians indicated they were waiting for their child to bring up the topic of transition. One grandmother explained, “[I'll know she's ready] because she's going to ask me. She ain't going to do nothing until then.” In the quote below a mother shared her beliefs that transitioning to adult care was solely up to her son:

I'm pretty sure he will let me know when he's ready to go to the adult clinic. If it was left up to me, I would say he's been ready to go a long time ago. His theory, I'm never going to adult clinic. So that's his choice.

Several guardians also indicated they were waiting for pediatric staff to share information about the transition process. For example, “Whatever ya'll suggest is fine with me” and “I guess [the social worker] is going to get an appointment for her next visit. I guess she's going to give us all of the information.”

Alternatively, a few guardians were actively engaged in helping their child transition to adult care. One mother who received treatment at the adult clinic indicated that she took her son to the adult clinic with her: “When I go, I take him with me…let him see what it's actually like. I even have him meet my doctors…so he can see what it would be like.”

Benefits

While more guardians than adolescents were able to articulate the benefits of a transition to adult care, both identified similar anticipated advantages which fell into three categories: control and responsibility, preparation for adulthood, and improved health care.

The most common positive expectation cited by adolescents was that they would experience higher levels of control and responsibility in the adult care setting. Adolescents indicated that they expected to be more involved in their own health care, and, as a result, be more responsible.

I mean, I know I'm going to be more in control of it. I'm pretty sure I'm going to be asking more questions instead of them telling me more things because I'm older…They consider me an adult now, so I'm going to feel like I'm going to be more in control as far as medical treatment and everything. I mean really, to be honest with you, I think it's probably going to show me a better sense of responsibility because I am older, so it's going to make me feel much more mature.

I feel like I have more of the say-so.

Several guardians also emphasized the increased responsibility that would likely accompany the transition to adult care.

I [think] that once she transitions she would…take more responsibility for her disease, where she doesn't now. She just takes her medicine and eats healthy, but she doesn't really do much more [than] that.

Some adolescent respondents also believed their movement to the adult clinic would prepare them for other aspects of the “adult world”.

I think that children are kind of different from adult because when you go to [the] adult [clinic] that means they're going to have to ask you a lot of questions in what you do and what you want to do with your life. And I think that the adult [clinic] will be better for us to do to get us prepared for the real world.

Similarly, the majority of guardians believed that the act of transitioning to adult clinic would facilitate their child's maturation. For example, one mother stated “Maybe she'll mature and get what she needs to do and take responsibility for her own mind.” Another parent indicated, “It will get him out of the kid thing, so to speak…I do believe he will understand that he's not a kid anymore.” A grandmother commented, “So I was thinking if she got to the adult clinic and was treated like an adult then maybe she would look at it more in the adult world.”

A few adolescents and guardians discussed possible improvement in health care in the adult clinic. As one youth explained “they might can do better things [treatments] than a pediatric doctor can.” Another teen expressed the idea that she would “get better knowledge, better understanding [in the adult clinic].” One parent specifically noted that adult providers may have more expertise with issues related to young adulthood:

There will be more things discussed in the adult clinic geared more to their age than is discussed here. I had concern about the [menstrual] cycle and now they're gonna be getting into the sexual contacts. All that kind of stuff will be more geared to someone going off to college. As you grow…the things you have to do change.

Fears and Losses

The majority of the adolescents reported not having any fears or anxiety related to the transition to the adult clinic. Similarly, several of the guardians reported no fears about the transition process, with a few citing the preparation they have done with their child to take ownership of their medical care. A guardian reported, “I have no fears or anxieties. I think they'll do well. I'm trying to teach them, if there's something they don't understand, to ask questions and give their own understanding; don't get half of the story, get it all, get the whole story.”

When asked about the losses they would experience in the transition process, most respondents noted that they would miss their relationships with their pediatric providers. One adolescent referred to the pediatric providers as “family” when discussing this loss.

Guardians also discussed their child's loss of relationships with pediatric providers as a primary concern.

He's[been] coming here since he was a very little child, so he knows everybody here. And I think that's really what's bothering him so bad…he knows he's not going to know anyone and it's going to be really hard, kind of like the first day of school.

Additionally, many guardians expressed concerns about losing their own relationships with providers in the pediatric clinic, “Yeah—I'm losing my family, this is it (the clinic staff). When [specific providers] left, it was like losing a part of your family because you've had them for so long.”

Similarly, many respondents noted having to build new relationships with the adult providers as a challenge, and the anticipated changing nature of those relationships from personal and playful in pediatrics to serious and professional in the adult clinic. One adolescent explained,

I'd have to start over, so I'd move into a new area. I've got to get to know the people, get to know the area. Just getting into the—just starting over. I'll second guess. It wouldn't be more of a personal relationship. It'll be more professional …

Another youth noted, “It's gonna be boring. The doctors are dealing with adults so they're not as fun.”

Guardians also discussed the changing nature of relationships between both themselves and their children with the health care providers and the overall clinic environment.

My fear is that even though, because of their pediatric experience, that when they get to the adult clinic, it's going to be so, so serious. It's not going to be the laughing and the joking and the kind of playfulness that they…experience here at the pediatric clinic. It's very more serious, so that's one of my concerns. But, that's part of growing up.

Um, I guess that it's just, it just seems to me that it's more serious, the adult clinic is. It's not as jovial, and the atmosphere is different. You come here to the pediatric clinic and…the television is showing kid movies and you have all of the kid's things to play with, and I play with them sometime too (laughs). But, it's just a whole different atmosphere, but when they go to the adult clinic, I mean there are a couple of magazines, and you know, CNN is on the TV, and you just sit and wait until they call you. So it's a lot more serious.

A less frequently voiced concern by both adolescents and guardians was the continuity of health care and medication during transition. One youth stated, “Something might go wrong in placement…they might mess up something.” A few guardians noted that they wanted to be sure their child has a good doctor at the adult clinic. Only one voiced concerns about the health-related outcomes for their child. She said, “I will be afraid that he'll become sick and I'd rather have someone to talk to keep him going on with the program.”

Several guardians noted that their child was simply not mature enough to receive care in the adult clinic. One mother shared that her daughter “doesn't even want to change from the pediatric dentist because she likes the fish on the wall…and she still sleeps with a Beanie Baby, don't tell her I told you!” Another parent explained:

He thinks of himself as Peter Pan. He doesn't want to grow up. He's not embarrassed about being around young kids. He doesn't have any big boy attitudes, so he could stay here until he was 40 and not blink an eye. He'd come here as long as they let him.

Recommendations for Smoother Transition

Some of the adolescents had no recommendations for how clinic staff could ease the transition to adult care. However, others shared suggestions that fell into three categories: support, information, and communication. The most frequently identified suggestion was simply to provide support. For some adolescents, assistance in the form of emotional support was requested. One young woman said:

Just make me feel as comfortable as possible, knowing that I am in transition. Just kind of be sympathetic to that.

Several other adolescents indicated that information about the transition process would be helpful. For example, one participant noted, “They can tell me…what the differences will be between the pediatric and the adult clinic.” Another adolescent suggested, “Tell me how it's gonna be…tell me about the people before I go meet them.”

Finally, a few adolescents encouraged open communication between pediatric and adult clinic staff. One adolescent remarked, “Just kind of communicating with one another…[name of current doctor] and the other doctor or hospital I'll be going to should talk. They can come over here and see how they do things.” Guardians were more able than the adolescents to articulate suggestions that would ease the transition to adult care. Many guardians suggested taking a gradual developmental approach where individual needs were taken into consideration during the transition process. One mother recommended, “Just take the time out to recognize that this is a child coming out of a pediatric clinic into adulthood that is not fully into the adulthood stage, but adolescence.” Two mothers explained:

Don't just have them come to clinic today and say, OK, well this is the last day we're going to be seeing you and goodbye, good luck, you're on your way out. I think this is something that should be led up to…Letting them know you're 17 now and pretty soon you're going to be going over to the adult clinic. Just something that leads up to that.

The most important element of their transition [is] to give them time. Some may transition quickly. [My youngest son's] like “Well, I can't wait.” But [older son] is holding on by everything that he can hold onto. He say “Well, I can stay here till I'm 24.” Different kids! So it depends on the child and the parent.

Several guardians noted that they and their children should meet the adult clinic staff prior to the actual transition in order to reduce anxiety. An aunt noted:

It would nice if he could meet them before he transitions and meet them on this turf, or for somebody to walk us over and introduce us. That would be nice.

Discussion

This study explored the expectations of adolescents living with HIV who are on the cusp of transitioning to adult health care and their guardians. The finding that most adolescents were unable to articulate expectations is somewhat surprising and contradicts previous research based on interviews with providers from the same clinic. Fair et al. ¹³ found that providers reported routinely introducing the topic of transition during early adolescence and frequently addressing the topic until the time of transition. This seeming disconnect requires further investigation into patient-provider communications leading up to transition.

Guardians were more able to articulate expectations than the adolescents. However, they held a relatively passive view of their role in the transition process as many guardians were either waiting for their teen or the pediatric staff to let them know when it was time to move to adult care. Guardians play an important role in the health care of youth with HIV. ¹⁹ Previous literature suggests that some adolescents who have transitioned to adult clinics express an interest in having their guardians more involved in their care within the adult setting. ^3,6 Health care providers may wish to encourage guardians to take a more active role in the transition process especially in light of the finding that guardians viewed the move to adult care as an intervention that would promote maturity. However, research has also explored the idea of parental involvement as a barrier to transition due to their hesitance to begin the process or their total control of care-related decision making. ⁶ Adolescents also stated that a benefit associated with attending an adult clinic would be preparation for the adult world. Bundock et al. ^{20 (p468)} found that several youth who had transitioned from a pediatric clinic to adolescent care appreciated the increased responsibility and getting “treated like an adult.”

The loss of relationships with medical staff at the pediatric clinic was a major concern for both adolescents and their guardians because, for many, the members of the pediatric care team had cared for them their entire lives, a finding supported by previous research. ^7,21 Valenzuela et al. ²² reported that many adolescents with behaviorally acquired HIV infection were extremely close with their care providers prior to the transition to adult care and frequently returned to their original providers to discuss treatment and life concerns. Indeed, across studies, the term “family” is frequently used by patients, guardians, and providers alike, to refer to the kind of relationship often developed between youth with HIV and their care providers. ^2,7,22,23 The importance of these relationships should be recognized and role they play in both facilitating and potentially hindering the transition process needs to be examined. Previous research has explored ways to make the loss easier including visit with pediatric staff following transition as well as marking the milestone of transition with some type of acknowledgment or party. ^22,24

Having to meet and trust new staff was an upsetting idea to participants in this and other studies on transition. ^3,22 Adding to the concern of meeting new providers was worry expressed by many participants over the expected change from many of the “laughing and joking” environment of the pediatric clinic to a “less fun and more serious” surroundings of the adult clinic. This contradicts research with young people who had completed transition to an adolescent clinic in the United Kingdom. Bundock et al. ²⁰ found that young adults who transitioned to an adolescent clinic preferred the more adult-like setting of their new clinic home and appreciated the way their new providers assumed they were responsible for their own health care. ²⁰ It is quite possible that worrisome expectations regarding the clinic setting can be allayed by visits to the clinic and the opportunity to meet with new providers.

The continuity of care concerns voiced by both guardians and adolescents are echoed in the current literature. In their recent review of HIV-related transition literature, Dowshen and D'Angelo ² included challenges posed by issues of health insurance status and difficulty navigating complicated social service bureaucracies as significant barriers to successful transitions. Assistance with continuity and quality of care was the leading recommendation for transition improvement from a cohort of 59 adolescents with HIV who had transitioned to adult care. ⁶

Other recommendations for improving transition offered by respondents included helping the adolescent feel comfortable in the new setting by being warm and friendly, sharing information about the clinic, meeting new providers prior to the transition, and maintaining open channels of communication between patients, guardians and pediatric and adult providers; all of which are also found in the existing literature (unpublished data). ^7,12

Finally, guardians suggested that providers approach transition from a developmental perspective that was tailored to the specific needs and strengths of each adolescent. Such an individualized approach is supported within the best practice literature ¹² and a position paper from the Society of Adolescent Medicine. ²⁵ Bundock et al. ²¹ argued that one way to offer developmentally appropriate care is through an adolescent clinic, known as the 900 Clinic, which serves as a bridge between pediatric and adult care. Adolescents begin to receive care in the 900 Clinic between 17–21 years of age and are followed in the adolescent clinic for 6–8 years before moving to adult care. An evaluation of their program indicated that 100% of young people with HIV who transitioned to the adolescent clinic under this individualized model of transition remained in care. Youth reported high levels of satisfaction with the care from their new clinic. This is in contrast to other research that found noted difficulties in maintaining newly transitioned adolescents in adult care. ²⁶

There are several limitations to this study. First, the sample size is limited to those adolescents with HIV who receive care through one tertiary care facility. All of the adolescents interviewed were perinatally infected; the results may not be generalizable to behaviorally infected youth. Second, the study participants were well integrated into pediatric care. Information on perceptions of transition from those not receiving care was not available. Also, many of the adolescents had guardians who acted as invested partners in their HIV care; this sample may therefore have more support than the general population of youth with HIV. Third, the sample is limited to one southeastern state. However, the incidence of HIV among adolescents in the south continues to rise making this a critical population to evaluate. ¹² Finally, generalizability may be further restricted since the adolescents in the study sample have lower rates of mental health and substance use problems compared to other studies of perinatally infected youth. ²⁷

Despite these limitations, this study has implications for health care practice. The perspective on transition provided by the pretransition adolescents is one not often explored or heard. Addressing the expectations, fears, and hopes of those who have yet to enter adult care provides an opportunity to improve the transition experience and possibly transition outcomes. Both adolescents and their guardians thought transition would bring more responsibility and maturity. Pediatric and adult health care providers should build upon this belief and collaborate with each other as well as with their patients to identify the skills necessary to succeed in the adult clinic and demonstrate newfound maturity. The strong connection felt between adolescents, guardians, and their pediatric health care providers creates an opportunity for health care providers to communicate clear and realistic expectations regarding transition.

Future research should examine the nature and content of patient–provider communication. Specifically, what is said and what is heard? Additionally, while some research has explored the different models of transition ^23,28 and the definition of a successful transition, ¹³ more extensive research is necessary to explore outcomes of transition. Finally, there is a need for longitudinal research that follows adolescents from the beginning stages of transition through the actual transition to adult care in order to better understand how the process is experienced and to develop models that promote successful integration into adult care.