Abstract
With the introduction of combination antiretroviral therapy (ART) worldwide, youth with perinatal HIV infection are increasingly surviving childhood and transitioning to adult care. Although a normal life span is anticipated posttransition, successful transition to adult HIV care has proven difficult, with worse outcomes posttransition than in pediatric and adult care. This study is a qualitative analysis of data from 4 focus groups of pre- and posttransition patients, caregivers, and healthcare providers in the Dominican Republic at an institution that provides comprehensive treatment including ART for HIV-infected persons of all ages. All groups discussed the problems and challenges that patients, caregivers, and providers experience while living the transition process and beyond. Five major themes emerged: the trauma of transition itself, ART adherence, experience and impact of stigma, social supports and barriers, and recommendations for improving outcomes. Participants’ insights offered approaches for a versatile structured transition process.
Introduction
Until recently, the antiretroviral therapy (ART) scale-up particularly in low- and middle-income countries lagged among children. 1,2 However, the proportion of HIV-infected children worldwide who receive ART more than doubled from 2010 to 49% in 2015. 1 –5 Many pediatric patients receiving ART, most with perinatal HIV infection (PHIV), who were once expected to die in childhood, now live to adulthood with a condition that requires adherence to presumably lifelong treatment and periodic monitoring. 6 –9 Transition implies complex challenges not only at the individual and family levels but also for health systems. Adolescents experience marked physical, cognitive, and emotional changes as they develop autonomy. 10,11 These processes may promote risk taking and exploration and adoption of peer norms that conflict with optimal adherence to ART and preventive behaviors as well as pursuing of emotional relationships, coitarche, and childbearing. With prolonged survival, long-term consequences of both HIV infection and the treatments may emerge. 12 Many youth with PHIV are orphans and/or experience multiple losses and stressed community or institutional caregivers. 13 For much of their youth, they attend protective, family-centered services, another “family” to be lost at transition. 14 Transition to adult care places youth with PHIV within systems that are more individually oriented, where they must quickly become their own caregivers and assume challenges sometimes daunting even to adult professionals. Adult providers may not be familiar or comfortable interacting with youth.
The sheer numbers of patients receiving ART who will transition in coming years are an unprecedented challenge to systems, particularly in low- and middle-income countries such as the Dominican Republic (DR), where more than 75% of HIV-infected children receive ART (over 30% of pediatric patients receive ART in the region). 1 Currently, in DR, there are no organized efforts to provide a transition process. The PHIV children escape stigma as “innocent victims.” 15 But as adults indistinguishable from behaviorally infected counterparts, they can encounter brutal rejection. 16 Teenage girls with PHIV who become pregnant are immediately transferred to adult obstetric prevention-of-vertical-transmission services and do not return to the comprehensive pediatric services, except for bringing their babies for follow-up; instead, even at ages as young as 13 to 15 years, they are transferred postpartum to adult care. Available information has reported that posttransition outcomes of youth with PHIV have been poor; HIV deaths among adolescents rose by 50% from 2005 to 2012, while deaths in all other age-groups decreased by 30%. 17 Lower retention in care posttransition has been reported. 18 –20 In the DR, data from the 2 principal centers providing ART to children suggest that approximately 9% of the 876 youth with PHIV who started ART since 2004 have already transitioned to adult care; posttransition death and lost to follow-up exceed 15% and vary significantly by whether patients need to completely leave the site of pediatric care for transition (Unpublished data 2016). To characterize the DR transition experience, we analyzed focus group data from pre- and posttransition patients, caregivers, and providers.
Methods
The study was conducted at Clínica de Familia La Romana, a comprehensive care facility for people living with HIV in the DR, which provides ART to the largest number of patients in the eastern part of the country and to the second largest number of pediatric patients in the DR. This center serves patients from both urban and rural areas; a significant portion live in bateyes, underserved sugarcane plantation communities. 21,22 The clinic has pediatric and adult facilities in the same building, each on its own floor, with its own staff. All focus groups were conducted in March 2014 as part of a clinic’s needs assessment to inform the design of a transition program. Four focus groups were conducted, which consisted of (1) 7 posttransition young adults, (2) 8 pretransition adolescents who knew their status, (3) 7 providers in pediatric or adult patient care, and (4) 7 caregivers of both pre- and posttransition youth.
The clinic’s social worker approached HIV-positive youth when they went to the clinic for medical follow-up, pick up medications, or other activities and informed about the focus groups. Youth were very receptive and interested, and quickly the social worker was able to gather the desired number of participants. Only few refusals were informed. Given the recruitment method, no patients lost to follow-up were approached. Patients and their caregivers were invited to participate in the focus groups and received information about the activity and date and time. Patients gave verbal assent or consent depending on their ages, and caregivers gave verbal consent for their own participation and for their children to participate if they were minors. Patients and caregivers completed short questionnaires eliciting basic demographic information immediately before the activity. Healthcare providers participated during working hours. Each focus group had a duration of 2 hours. Florida International University (FIU) personnel offered general recommendations about focus group methodology. Two of the authors facilitated the focus groups, which were digitally recorded. Recordings were reviewed to ensure anonymity of participants and subsequently sent to FIU where they were transcribed by a native Spanish speaker. Recordings and transcripts were anonymized and referred to participants as participant 1, participant 2, and so on or P1, P2, and so on. Facilitators, transcriber, and researchers had no prior or subsequent contact with participants.
Some of the questions in the focus groups are as follows: For youth, “how did you learn about your condition?” “what is the most difficult thing of living with HIV?” and “what should be the right age for youth to go to the ‘adult side’ and why?” For caregivers, “what are the challenges you are facing now that these children are growing up and becoming adults?” “how are you helping them to move from adolescence to adulthood?” All 4 groups were asked, “what do you think can make this transition easier?”
Data Analysis Plan
The present study used a grounded theory 23 and a phenomenological approach to data analysis. Although creating a theory was not the end goal, the analysis was similar to grounded theory in that it was inductive, and the goal was to recommend important factors and constructs in a healthy model of transition for HIV-positive youth from pediatric care to adult care. It was phenomenological in that the focus group discussion asked about the participants’ experiences within the clinics. Two bilingual, bicultural, and independent coders coded all the transcripts for main themes. Thematic analysis was conducted for each focus group using open coding. Once a theme was identified, coders would select the block of text representing that conversation or discussion that included the theme. After the first transcript, the coders met to agree on the main themes. Agreement was reached by consensus. Identified themes were used to create a codebook, and all subsequent transcripts were then coded using this codebook. Both coders would code each focus group transcript independently and then meet to determine agreement after each focus group. This was done for all groups until all focus group transcriptions were categorized into main themes. There was an 83% agreement between the 2 coders. Coders identified recurrent themes, as they emerged from the data. All coding were done by hand.
The main findings for the present study include the most recurrent themes across the groups. Data triangulation was used in order to establish trustworthiness. Quotes used in the article were translated to English by a native Spanish speaker. The university institutional review board approved this methodology.
Results
Demographic Characteristics of Caregivers, Providers, and Patients Participating in Focus Groups
Seven caregivers participated, 5 (72%) of them were female, with a mean age of 53 years (range: 36-75) and 5 were urban residents. The group was composed of 3 mothers, 2 grandmothers, 1 father, and 1 uncle. Four participants were caregivers of adolescents who have not transitioned yet. Six had completed elementary school and 1 had graduated from secondary school (12th grade). All 7 healthcare providers were female and included nurses, physicians, psychologists, and social workers. The 15 patients ranged in age from 13 to 23 (mean = 17.8) years; most were female (Table 1).
Characteristics of Adolescents and Young Adults.a
aN = 15.
bTwo adolescents did not remember when their condition was disclosed to them.
Qualitative analyses identified 5 main themes in all focus groups: (1) the transition process itself, where participants expressed expectations and fears related to changes from pediatric to adult health care; (2) adherence to ART that revolved around difficulties already faced during adolescence and what is going on with young adults who already transitioned; (3) the experience of stigma now, in the past, and facing the future; (4) social support/barriers perceived during adolescence and then as adults, and (5) recommendations offered by participants in response to specific questions.
Transition Process
Youth, both pre- and posttransition, focused on relationships and the expectations related to adulthood. Loss of relationships was mentioned for youth and health providers. Pretransition youth spoke about their concerns regarding the transition process. They revealed a fear of social isolation or not being able to talk to anyone at the adult clinic. “I’m going to feel weird because I won’t be able to talk to anyone downstairs” (16-year-old female). Others mentioned they would miss staff and services provided in the pediatric clinic that are not available in the adult clinic. The youth mentioned the staff such as the pediatric clinic director, the nurses, and the outreach worker that visits them at their homes as people they would miss in the transition. They also mentioned that they would miss the summer camp that is only available to pediatric clients. I’m going to miss the home visitor because I live far away; she visits and tells me when I need my meds, and this, and that…. (16-year-old male) I will miss going to summer camp as a camper, because as an adult, I can’t go back. (17-year-old female)
Not everyone thought they would have substantial losses in the transition. Some stated they would not miss anything because they would be transitioning with their group or cohort of friends. I won’t miss too many things because almost all of them will be with me downstairs, I won’t be alone. But, I’m going to miss the doctors and the nurse who are always trying to help us. (17-year-old female) Well, when they told us that we were going to the adult clinic, we were already comfortable with the doctors we had, but they told us: Now you are going downstairs! I was 15 or 16 years old. I felt okay because it was a change.” (20-year-old male). “I was sad because my friends are still there [the pediatric clinic] and it’s not the same. (19-year-old female) We do have the experience that when they reach early adulthood, they quit. We have those youngsters who never came back to pick up their medications and are having a life of vice, unattended. (Generalist Physician) I think, if we start early on working on disclosure and talking about their condition, we could find creative ways to socialize their life condition, so, when they become teenagers and young adults, it is very probable, very probable! They’ll feel more motivated to continue. (Generalist Physician)
Adherence
The groups discussed the issue of adherence. Several pretransition adolescents shared that adhering to their medication was difficult and that it was very common for them to forget to take their medications. It is because I have to take five medications! Just thinking about it…look at my face! But I think: this is what keeps you alive, enjoying life, so gorgeous, and I take them all. Gulp! Oh my God! I feel like they stay there forever, and never go down, those pills! (15-year-old female)
Young adults who had already transitioned spoke about being in charge of their medications, and they described different strategies used to help them remind themselves including setting alarms, having the medications handy, and having significant others remind them. A barrier to adherence that was mentioned repeatedly was the number of pills. Finally, there was a general agreement among group participants that text messaging reminders would be an effective way to help youth stay adherent. Next quotes describe some of these themes: I have an alarm that is on 24/7. I take it everywhere and I carry the meds with me anywhere I go, so I can take them. (22-year-old male). My partner knows about my condition; she reminds me about taking my meds on time. (23-year-old male). I am very worried with teenagers transitioning. That they can become less adherent. That has happened a lot, some are not coming anymore. In Pediatrics, because there are fewer patients, the nurse was on top of it if someone did not show up. When they leave Pediatrics, they are kind of lost. (Pediatrician) You have the fear that patients will not continue the medications, because you cannot follow their adherence as closely as before. (Nurse Adult clinic) My child is 19, I can’t control him anymore. Sometimes he likes to drink alcohol but he shouldn’t! Well, that is the little problem that I am having now that he is an adult. (51-year-old grandmother)
Stigma/Discrimination
The fear of rejection by others was prominent in all of the focus group discussions. Pretransitioned youth, for example, spoke about their fear that others would find out about their HIV status. They spoke about how people treated those with HIV worse than people with other diseases and that they feared people would not want to have anything to do with them. “Sometimes I wake up with the fear that someone may know and tell everybody!” (13-year-old female). Some of the pretransitioned youth also stated that it depends on to whom you disclose and that you don’t want to disclose to people who are going to hurt you. Still, there were also mention of support from friends regarding their status. “I have two friends. We are together since we were little. I told them what I have and they supported me and said that ‘that’ is nothing. They’ve never made fun of me and support me, so, I don’t get sick” (16-year-old female).
In both pre- and posttransition patients’ groups, the fear of disclosure to romantic partners was prominent. Both adolescents and young adults worried that someone they love would not love them back or not want to have a relationship with them. “What happens is that sometimes we fear that if we get engaged, then, we tell them about the condition we have and they can say: No! I cannot marry you with that condition! That is our fear!!” (16-year-old female).
This fear of disclosing to romantic partners was also mentioned in the healthcare provider and caregiver groups as an important barrier to the transition process and continued HIV care. Healthcare providers mentioned that some young adults stop going to the adult clinic for fear that their romantic partner will find out. “Another barrier when they become adults is when they get married or have a relationship, but they are afraid, they haven’t told their partners about their condition, fear is present and is important. Panic begins: No, I’m not coming anymore” (Social Worker). In general, the transition process may increase this fear of rejection and being identified as HIV positive by others because the adult clinic is seen as less protective than the pediatric clinic. “An awful change is the panic. They are terrified of being identified because of their condition. Before, they were kids, they were protected in Pediatrics, because there are less patients there, they are more discreet when pulling out medical records and about everything, and all of a sudden, they move to a stage where they will be called by their names and they have to face the reality by themselves” (Generalist Physician)
Another interesting theme that was mentioned in the health-care provider group was the observation that this fear of disclosure to romantic partners may vary by gender. According to the providers, young women have a harder time disclosing to their boyfriends than the young men have in disclosing to their girlfriends. For girls it is even more difficult! I’ve seen the boys quickly finding a partner and telling her about their condition. And they come with their partners. In contrast, I don’t see girls coming with their partners.” (Nurse). We see the same in the adult clinic. That is the ‘macho’ thing. Women are discriminated here [in the Dominican Republic]. A woman almost never discloses to her partner, because she is afraid of his reaction. Instead, the man, the ‘macho’ goes and tells: I am sick. (Social Worker)
Social Support/Barriers
Social support was another theme mentioned across the different groups, although the source of support and the degree of support varied. For the pretransition youth, social support from family, friends, and clinic seemed abundant. As the following quote suggests, the youth found social support and a sense of belonging at the summer camp program held by the pediatric clinic. Pretransition youth talked about having fun, feeling better about themselves, and getting advice about how to deal with their HIV. The clinic also helps, and even more with the summer camp they had, we had so much fun and met more people! (13-year-old female)
However, in the posttransition group, the references to social support were more mixed with some receiving considerable emotional and tangible support while others described dealing with their HIV infection alone. These two quotes show the different experiences regarding support that were mentioned by young adults. When my family knew that I had the virus, they changed a lot, they were more loving, and they gave me everything, everything that I wanted, they got it for me. (22-year-old male) I wasn’t pampered. I had to mature before my time. I had to overcome my illness alone, because I did not have anyone to take care of me, because I was orphaned. (20-year-old female)
Finally, the healthcare providers expressed concern that the youth lose social support from their caregivers when they transition to the adult clinic. The providers stated that once they transition to the adult clinic, the caregivers no longer come with the youth to the clinic. This, along with the long wait times to see adult care providers, serves as barriers to them remaining in care. One of the biggest barriers when they transition to the adult clinic, is the wait times…when they are asked: How did you feel? How was your day? They say: You have to wait too long! It is very difficult, there are too many things to do…, and perhaps that is why they are not motivated to come.(Pediatrician)
Recommendations
All groups provided recommendations in regard to the creation of a formal transition program (Table 2). Overall, these recommendations focused on recognizing that transition is a process that requires some individualization and that should occur both while the patient is still in the pediatric clinic and posttransition into adult care. The groups recommended that the process itself should be acknowledged with a graduation ceremony and a welcome in the adult clinic, to reduce the feeling of an abrupt “pushing out” of the patient when they have “outgrown” the pediatric clinic and the feelings of “loss.”
Recommendations Provided by Participants for a Transition Program.
Valuable components of the pediatric experience, including camps and other supportive experiences, should be available posttransition. Moreover, the need for young patients to change their expectations and routines to fit those of the adult clinic should be balanced by efforts on the part of the adult clinic to examine opportunities to improve their services while making them more acceptable to posttransition patients. Some of the processes that are cherished by the youth pretransition would represent improvements in the quality of care and even the work environment if adopted by the adult clinic. These include encouraging caregivers and trusted companions of all adult patients to remain engaged and continue accompanying patients to the clinic, strengthening the confidentiality and consideration that adolescents so cherish in the pediatric clinics and ensure access to home-based support and visitation. Group members suggested that education and reeducation of staff in the clinic should focus on long-term strengthening of capacity to deliver competent, empathic, and respectful services, particularly for young people. Integration of text messaging and other mobile strategies was a key recommendation. Finally, logistical preparation for the youth’s first visit at the adult clinic (including record preparation and readiness) is critical to the understanding of transition as an organized, planned process. Although all groups were asked to offer their suggestions to make the transition process easier, caregivers were less explicit giving recommendations and considered the clinic should handle the process in entirety, “I think the clinic should have a meeting and talk to the youth and the caregivers” (40-year-old mother).
Discussion
Transition of adolescents with PHIV to adult care may be a risky process, often associated with reduced adherence to or discontinuation of ART, or even complete loss to follow-up or mortality, as described in recently published reports 8,18–20 and in our clinic’s own experience (Unpublished data, 2016). Reflections given by patients in our focus groups give a mixed picture that exposes the diverse individual life experiences of this middle-income country population. Youth still in the pediatric clinic anticipate transition with some excitement (as a type of “growing up”), but fear of change is expressed in terms of things they will miss. Their opinions suggest that transitioning as a group may be more acceptable. For young adults who already transitioned, there are some positive aspects of becoming independent but, at the same time, they characterize their experiences as difficult, abrupt, and even traumatic. Some are still adjusting to the implicit changes of being treated as “adults” and strongly endorse posttransition “support” that retains aspects of their pediatric experience, including camps and home visits.
Healthcare providers were very critical of the lack of an established program and clearly had been thinking about processes that can be implemented to create an organized transition experience. Some of the recommendations were related to administrative practices that work well in pediatrics and should be adopted in the adult clinic. The most urgent recommendations were shorter wait times, more confidentiality when dispensing medications, and having the same provider at all scheduled clinic visits to establish and maintain a trusting and continuous provider–patient relationship. Furthermore, they indicated that greater efforts needed to be made to improve communication among services, between the pediatric and adult, but also with social services and psychology. These recommendations from healthcare providers were not exclusively meant to refer to the transition program and should be considered urgently needed improvements for the clinic in general and in a larger sense for health care of adults living with HIV, throughout the DR.
In contrast to the patients and healthcare providers in our study, and caregivers in other studies, 14 our caregivers did not offer much feedback. Caregivers mostly expressed gratitude for services provided by the clinic during their children’s youth but did not offer insights about their role, despite their being directly asked. Moreover, losing caregivers’ support was mentioned by pre- and posttransition youth and healthcare providers as a concerning behavior; its association with disclosure has been previously identified as an important hazard of both the disclosure and the transition processes. 24 The caregivers’ focus group was the least productive in term of comments, and the general mood was somber, with comments focused on the uncertainty of future and the daily difficulties they endured. We have documented high levels of depression in caregivers of youth with PHIV in Hispaniola, particularly DR mothers and grandmothers, those affected by poverty and food insecurity, and female caregivers who are married or cohabiting, generally with a man who did not know their child’s or their (if infected) status. 25 The probably high levels of poverty and untreated depression in these caregivers might have contributed to this somber mood. Finally, at the time of the focus groups, panic was peaking in the DR over draconian denaturalization processes and mass deportation for “undocumented” descendants of migrants, just weeks before a potential “path to citizenship” was introduced under international pressure. 26 This weighed heavily in the minds of caregivers, many of whom were of Haitian origin or descent, and this certainly would have explained concerns and despair over the future of their children.
Disclosure of HIV status to romantic partners, and particularly the gender-based additional burden of this process, was an important issue discussed by young people of both sexes and by providers who noted that male posttransition patients come to clinic with their uninfected partners, unlike their female counterparts who maintain their HIV status and ART use as guarded secrets. Although we did not find previous research specifically about adults with PHIV, issues related to gender inequalities and community stigma have been mentioned as barriers faced by women living with HIV who, following disclosure, have reported economic loss, partner violence, and abandonment. 27,28 Providers explained this phenomenon as reflective of Dominican “machismo,” but these data on disclosure by women elsewhere suggest that partners’ greater tolerance for an infected male than female is not so DR-specific.
Overall, ART adherence itself was the theme that generated the most discussion but was approached differently by the 4 groups. Caregivers and providers were fearful about patients’ declining adherence because of the transition process. Pretransition youth expressed how difficult it is to adhere to complicated regimens, and posttransition participants were more focused on techniques used to maintain adherence.
Limitations of this study included its qualitative nature and small size and the fact that it represents no patients lost to follow-up, only living patients receiving ART attending the same clinic in the DR, which make results less generalizable. However, it should be noted that preliminary data suggest that this clinic, with its on-site adult program, has a relatively low rate of posttransition death and loss to follow-up, significantly lower than the other large pediatric service in the DR, located in a children’s hospital with no on-site adult clinical services. Because HIV clinical services spanning infancy to adulthood in “family health” settings in low- and middle-income countries are not at all unusual and in fact characterize some of the model Caribbean ART clinics, 29 –31 this characteristic of our population is not entirely a weakness and should be considered a potentially reproducible feature for transition planners worldwide.
Participants envision interventions at various levels, where transition is seen as a process that starts in pediatrics and has a flexible, individualized length and adaptability based on patient and family characteristics. Besides the normal patient “preparation” for transition, graduations and welcoming ceremonies as well as access to support groups, camp, peer counselors, and continuing the supportive presence of community health worker visits beyond adolescence were suggested. Given the fact that this clinic already works as a one-stop clinic, with all pediatric and adult services in one site favors the implementation or optimization of some of the suggested processes. Some can be tweaked to make them more efficient with advantages for both the clinic and the patients such as medication provision and coordinated transfer of medical records from pediatrics to adult care, while others will require more planning and time, given financial and human resource restraints.
The results of this exploration underscore the needs and challenges that patients, caregivers, and health systems in low- and middle-income countries face as the first (and hopefully last) large wave of PHIV ART patients survive childhood and transition to adult care. Based on the insights of participants, such a program should be adaptable enough to offer individualized approaches and should be part of a thoughtful commitment to quality improvement in adult HIV care to improve outcomes in all patients, including posttransition adults with PHIV.
Footnotes
Acknowledgment
We want to acknowledge this manuscript to our dear friend and colleague the late Noemi Paniagua Torres, BA, who with great enthusiasm and work coordinated the logistics for and made possible the undertaking of these focus groups.
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) received no financial support for the research, authorship, and/or publication of this article.