Introduction

Early infant diagnosis and therapeutic innovations mean that individuals with perinatally acquired human immunodeficiency virus (PHIV) or HIV acquired during early childhood are increasingly surviving into adolescence and adulthood [1].

The young people affected are still very small in numbers in northern countries. Given the existing databases, we can only estimate the numbers of young people with HIV acquired during the perinatal period or in early childhood. For example, in 2014 in France, 3930 children and adolescents (up to 14 years) benefit from exemption from their care costs for infection with HIV thanks to universal health insurance, they represent less than 4% of HIV population [2]. In the United States 3121 adolescents (up to 14 years) were living with diagnosed HIV infection in 2013—less than 1% of the diagnosed HIV population [3]. During adolescence, these young people receiving care from childhood must continue their care pathway through transitioning from pediatric to adult services.

This health care transition is defined as the “purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.” [4]. This phase is recognized as a high-risk period for the health status of young people who can experience difficulty making the transition to the adult health system [5]. The reasons of poor adaptation in adult care are multiple and may be common to a set of young people with chronic diseases: in adult care the professional caregivers may change at each visit, consultations are more focused on clinical outcomes rather than psychosocial or developmental concerns, there is less warmth communication between patients and professionals, there is a need for the young to be autonomous in its illness management which is not necessarily the case in pediatric services [6]. This can lead to disruption in medical follow-up. The literature revealed some significant adverse health consequences related to lack of continuity of care or resort to emergency services following a bad transition [7].

In different chronic conditions, many studies have highlighted these consequences of transition, such as the increase of organ rejection in kidney transplant adolescents [8], the rise of HbA1C in young people with type 1 diabetes mellitus (T1DM) [9], or the increase of disease activity in chronic rheumatic disease [10].

Among young people with PHIV, transition is a crucial step for the achievement of an optimal health status in adulthood too. It requires therapeutic and care continuity between pediatric and adult services [11]. A study in England has identified an increased crude mortality rate following transfer to adult care of young people with PHIV [12]. Such findings highlight the need to ensure the healthcare transition success. However, difficulties encountered in delivering appropriate health care for young people with HIV have been widely identified. The United Nations Program on HIV/AIDS (UNAIDS) reports that there is poor prioritization of adolescents in national plans for scaling-up HIV testing and treatment services [13]. The World Health Organization (WHO) has also found that health workers, even those experienced in caring for adults with HIV, are often ill-equipped to support the healthcare needs of adolescents [14].

The confrontation of HIV-specialist professional working in adult care with youth is unusual, this population represents generally less than 4% of its active list of patients which is not the case for a set of other chronic diseases where a larger proportion of patients followed in adult care have developed their illness since childhood. Besides the rarity of the situation, this population is characterized by its unique issues that is necessary to take into account [15]. Young people with HIV addresses specific challenges particularly because of its long history with the infection, taboo and secret surrounding the disease since his birth, the parent’s guilt or even its socioeconomic status often linked with family migration stories.

The findings of a care system currently unsuitable for young is alarming since poorly adapted systems are recognized as barriers to optimal engagement in the care of patients with HIV [16]. Conversely, communication between adolescent and adult providers, and age- and developmentally-appropriate care, are considered key facilitators of successful healthcare transition [17].

While the WHO has developed a toolkit for transition of care for adolescents living with HIV [18] and the US has proposed guidelines [19] some countries such as France do not have national recommendations for healthcare transition of young people with PHIV.

Our research aimed to explore how healthcare teams with experience in caring for adults with HIV perceive young people with PHIV in transition and adapt their practices to ensure its success.

Materials and Methods

Participants

Participants were health and social care professionals with experience of transition in HIV care, defined as the involvement in at least 5 cases of young people with PHIV in transition during their career. In France, HIV-positive patients are almost exclusively follow-up in hospital sector and so this is the setting in which was mainly conducted our recruitment. Initial recruitment was carried out in a pediatric research hospital serving patients of diverse ethno-cultural origins, from central and suburban Paris. The hospital is situated in the region of metropolitan France with the highest HIV prevalence rate [20, 21]. The head of the pediatrics department authorized the identification of the first participants who were professionals from other hospitals and associations with which he collaborated or who were known to be particularly involved in the care of young people with PHIV. Participants identified in this primary listing were used as informants in a snowball procedure. They were asked if they had contacts with professionals involved in healthcare transition of young people with PHIV and if they were willing to provide us directly with potential respondents’ contact details. All these recommended professionals were invited to participate, and recruitment of participants continued based on diversification until empirical saturation of the data appeared to have been reached. Saturation means that no additional data are being found whereby the researcher can develop the properties of the category. Seeing similar instances over and over again, the researcher becomes empirically confident that a category is saturated [22]. Our sample was constructed with the aim of providing a comprehensive overview of situations and problems encountered by professionals involved in transition. Thus, in addition to hospitals and teaching hospitals from Paris and suburbs, one youth health unit and one association for persons living with HIV/AIDS “Dessine moi un mouton” participated. The youth health unit is attached to a hospital for adults and is dedicated to the medical care of adolescents and young adults experiencing familial, social or educational breakdown, whether HIV-infected or not. The association offers young people affected by HIV/AIDS a place where they can come together and participate in activities planned by a team of animators, social and educational assistants and psychologists. Between February 2014 and February 2015 we contacted 20 professionals and 18 were interviewed: 1 nurse supervisor did not respond, and 1 patient association responded that their population did not match our target of young people with PHIV. (See Table 1 for characteristics of participants)

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Table 1. Participants characteristics (n = 18).

https://doi.org/10.1371/journal.pone.0169782.t001

Results

We identified themes related to professional’s perspectives on care management of young people in transition. The themes presented concern the categorization of patients in transition made by health professionals, the practices proposed to deal with the transition problems and the difficulties encountered by professionals who are facing youths in transition.

Means to handle healthcare transition and arrival in HIV adult services

Among the elements proposed by the interviewees to allow smoother transition from pediatrics into adult services we have identified two main themes: "strategies for the social support of the patients since childhood" and "strategies to ensure continuity of care between pediatric and adult services” that appeared as elementary key points to implement in pediatrics according to professionals from adult services (table 2).

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Table 2. Transition key points identified in the interviews.

https://doi.org/10.1371/journal.pone.0169782.t002

Relatively to “practices applied in adult services”, things were more heterogeneous. In adult services there was no official program implemented for these young people. Professionals reported unofficially implemented practices that adapt to the specific needs using available resources and knowledge.

“He could have a treatment once a day, three pills, but it’s hell. It’s hell even if we try to do an arrangement one time, he came in the service everyday take his pills. We prepared food, there was the nurse, the psychologist, me and all the patient education team, we stayed with him when he was eating we put mint syrup in his water for him to swallow his pills, he took them in front of us. He did this for 15 days, and then he disappeared” (Nicole, doctor, adult service)

“We did a group with some adolescents here with 2 psychologists, there were 2 because there was one from pediatrics and one from my service and we have formed a group from nothing, that tried to bring together adolescents” (William, doctor, adult services)

“We proposed recreational things, we want to propose—but we will see if it is financed—to do a little weekend where we rent accommodation, we take ten teenagers from our service… We have some ideas about the activities for the weekend, we have done some dinners with 5–6 teenagers in a pizzeria and we talked about this idea… This helped to establish a link” (Victor, doctor, adult service)

Discussion

Young people with PHIV constitute the entirety of the active caseload of pediatric healthcare teams working with HIV patients, whereas in adult health care teams they represent a very small proportion of the patients. We have found that professionals working in adults care completely distinguish these young people from their patients infected since adulthood, as it has been recommended [19]. While most professionals pay particular attention to these patients, all of them recognize that they are globally difficult. This is consistent with the description of these patients as a unique patient sub-populations made from a global review about perinatally HIV-infected adolescents. There is mention of the particularly complex adherence in adolescence, socio-economic pressures related to orphanhood, neurocognitive deficits associated with chronic and severe HIV infection, stigma, discrimination and socio-economic levels of families [25].”Difficult patient” is here defined as one who makes healthcare teams feel ineffective [26], because of non-compliance with treatment or resistance to forming an effective alliance with their medical provider, as reported in pain practice [27]. We can also discern here the concept of “bad patients” [28], as patients who fail to validate clinicians' sense of themselves as effective professionals, who threaten their control, and/or who create fruitless work [26]. Patients can be evaluated as “bad” according to their diseases, their behavior, their social backgrounds, their attitudes and/or staff attitudes [28]. Some adolescents may be considered as bad patients by healthcare teams who are unfamiliar with this age group, particularly in the field of HIV where non-adherence to medication is commonly reported [29].

Difficulties in forming an effective alliance in care also suggest the idea of the “difficult doctor”, one who may be highly frustrated because of being inadequately equipped to address the complex psychosocial needs of his or her patients [30]. In the context of transition, poor evaluation of adolescents’ abilities to receive and process information and lack of communication are reported as the greatest barriers to successful transition to HIV adult care [14]. Moreover, it has been shown that patient-clinician relationships are predictive of adherence in HIV patients [31] so this needs to be considered during transition. In our study, adult HIV care workers recognized that the relationship with these young patients requires careful and sensitive negotiation to ensure that trust is established, as reported in more detail elsewhere [32]. To better enhance relationships between patients in transition and their professional caregivers improvements in the following areas could be taken into account: ensure that the transition to adult care is made to professionals with a particular sensitivity to the care of adolescents and young adults; reinforce mutual learning between pediatric and adult care professionals to transfer knowledge for adolescent care which is between their two areas of expertise (for instance in carrying joint consultations); identify in each service one professional as a resource person—sensitive to adolescents and young people—who can act as an intermediary between the new professional caregiver and the patient; when young people who have to leave pediatrics are not sufficiently ready to move directly into the adult sector propose a longer period of transition via an intermediary adolescent specialist.

Our research took place in the French context, where there are no national guidelines for a structured healthcare transition for young people with PHIV. The transition process—the existence of a pediatric preparation, its contents, the age at transfer—is highly dependent on healthcare settings. Because of the French welfare model, insurance or access to medication do not appear as major sources of failure, as is the case in other countries with different systems [33]. The solutions implemented by the teams were developed in this context but may feed into the reflection in other countries. The patient categories we report here are broad and schematic but bring together in 4 groups the majority of patients. Individual young patients do not match every feature of a category but in overall terms correspond to one of them. The categories have not been proposed as a hierarchical ranking but as ways to better guide adaptation of young patient handover during the transition.

In our context of young people with HIV in transition to adult care in France, doctors were the professionals who were mostly concerned, nurses were involved but in a lesser extent, and other paramedical or social professionals were rarely involved with the youth in transition. Doctors were mostly those who allowed to distinguish the 4 categories and give the first elements of description. Data provided by the nurses allowed us to enrich and illustrate the different profiles. Finally, because psychologists and social workers do not interact with all patients—they usually do not see those who are "all good" and those who are “extreme / dropouts”—their perspective was different and more limited but helped nourish some of the categories. One limitation of this work is that the perspectives of other people involved in care transitions such as patients, caregivers, or professional providers from other sectors were not explored in this specific study. These aspects could enrich the understanding of care management of young people with PHIV and could be important to keep in mind when thinking about youth in transition.

There are a number of prospects for this work, for example by studying the different way in which patient may be “classified” according to various profiles of professionals or setting (for instance in pediatrics or adult sector). Indeed, it is likely that professionals with paramedical, medical or social backgrounds may have different criteria to understand the situation and categorize patients. These criteria may be clinical, social, emotional, behavioral. In our study categories are based on a set of these criteria.

A possible direction for future research might be to analyze the effectiveness of personalized transition care for young people with PHIV which uses the proposed categories to provide differential and adapted support for each young person.

These studies could provide an assessment of the effectiveness of interventions and elements for standardisation of "differential transitional care". Based on the evidence generated by these evaluation studies and existing recommendations, standardisation of transition practices could be undertaken so that young people in transition benefit from equitable and consistent transition care based on demonstrated effectiveness rather than health centers' individual decisions. Another prospect could be based on the finding that caregivers had very different ways to address problems with patients during care transition and way of perceiving these patients. It has been reported elsewhere (26), that moral appraisals may vary according to patient characteristics, clinician characteristics, tasks, organisational factors, and play a role in the quality of relationships with patients. The concept of emotional intelligence [34], seems particularly relevant to study. It represents the ability to monitor one’s emotions as well as others’, to discriminate among them, and to use this information to guide one’s thinking and actions [35]. These competences appear to correlate positively with patient care and communication [34]. Our findings, and the association of good patient-provider relationships with positive health behaviors in HIV [36], suggest the importance of addressing emotional intelligence in HIV providers. A last prospect to this work would be to study the extent of these classifications to other groups of patients.

Conclusion

Our research has explored how adult healthcare teams adapt their practices to young people with PHIV during transition. We found a lack of formal training in adolescent issues, but also discovered adapted practices being unofficially implemented using available resources and knowledge. Most of these practices are not routinely offered but are implemented according to the profile of the young patient or to the origins of the transition problem: relational, acceptance of illness, failure to navigate services. Our findings show the importance for professionals to adjust their practices to be consistent with the overall needs of adolescents. It is also important to moderate the support during transition for different profiles of young people and construct a suitable and satisfactory care relationship–that is an essential element to transition success.

Results assert that there is a need to provide differential transition care to provide the best support to all young people. The choice of the type of care best suited to the particular needs of the patients may be facilitate based on a categorization of patients in groups depending on their characteristics. This proposal is based on data obtained from adult care professionals. However, it should be confirmed with the views of all of the other actors involved in transition.

Evaluation of needs and discussion about the different transition plans have to be done with professional’s care team, parents / guardians and of course the teenager himself. There is a need to pursue the reflection, on how to offer flexible transition programs taking into account the diversity of PHIV patients profiles. Indeed, as well as a "light" program may not be sufficient for patients who most need support, an extensive and intensive program may not be suitable for young people that are already being autonomous and ready to adult care. For reasons of feasibility and cost, but also to ensure efficient and satisfactory transition for patients it is important to deliver adapted transition care that have to be differential according to characteristics and needs of patients. Likewise, it is important to provide standardised and common practices during transition for patients who have the same needs, to access well adapted care and increase patient equity. The assessment of differentiated approaches on efficiency criteria and cost-effectiveness could be undertaken.

Supporting Information

Acknowledgments

We are very thankful for the time that all the care and social workers have given to participate in this study, we gratefully acknowledge Duncan Fulton for his proofreading and the SFLS (French Society to Fight AIDS) and especially N.Trocmé for their feedback on the results.