Mechanisms of impact and experiences of a person-centred transition programme for adolescents with CHD: the Stepstones project

Adolescence and young adulthood pose challenges for most individuals in the process of becoming an independent person. For young people living with chronic conditions (CC), there is an additional challenge in balancing the developmental tasks associated with adolescence, such as developing a sense of identity, planning for the future and gaining independence from parents. Moreover, the young person must also attain self-management skills to manage their health and care, develop healthy behaviours and cope with challenges related to their CC [1‐4].

Transition programmes have been developed to support the transition to adulthood and transfer from paediatric to adult care. These programmes have been evaluated through randomized controlled trials (RCT), showing positive results in patient-reported outcomes (i.e. disease-related knowledge, self-efficacy and self-management) [5], as well as in reducing delay in transfer to adult care [6, 7]. However, none of these RCTs have published process evaluation studies explaining the mechanisms that led to these outcomes [8]. Indeed, transition programmes are complex interventions, consisting of multiple interacting components, targeting different organizational levels and requiring a change in behaviour on the part of those involved in delivering and interacting with the intervention. Process evaluations of these interventions are therefore essential. The objective of a process evaluation is to understand how and why an intervention works by assessing the implementation process, the contextual impact on this process and what change mechanisms were underlying in achieving (or not achieving) the outcome [9]. As process evaluation studies of transition programmes are lacking, these programmes remain ‘black boxes’ for which mechanisms are unknown, this hampering reproducibility and implementation of transitional care.

This paper reports on a process evaluation embedded in the STEPSTONES (Swedish Transition Effects Project Supporting Teenagers with chrONic mEdical conditionS) project, for which a person-centred transition programme for adolescents with congenital heart disease (CHD) was evaluated through an RCT [10, 11]. The primary outcome was patient empowerment, which is a resource relating to self-management and participation in care, aiming to make the adolescent an active partner in the decision-making process [12, 13]. A fundamental aspect of understanding the change created by a complex intervention arises through investigating the link between the programme activities and outcomes [9, 14]. By exploring change mechanisms we can achieve a deeper understanding of which components were more important and which components were redundant, thus facilitating reproducibility of the intervention into other settings. The aim of this paper therefore was to (I) describe adolescents and their parents’ experiences of participating in a person-centred transition programme aiming to empower them in transition to adulthood, and (II) to explore the potential mechanisms of impact from their perspective.

Table 1 describes the participating sample. The results are presented according to the two aims of the study.

Figure 2 presents an overview of the components of the transition programme with related subcategories. Results from the parental interviews are only presented in “Guidance of parents” and results from the adolescent interviews are presented in the remaining seven components.

The analysis generated a conceptual model on the mechanisms of impact of the STEPSTONES transition programme, which program activities (i.e. components) that were responsible for these and the generated outcomes. The mechanisms were categorised to either the process of delivering the program or to the context (Fig. 3). In the dimension of knowledge and understanding, interpretation of results from phase one led to the understanding that the programme activities helped the adolescents become experts on their CHD, and understand how this condition affected them and how to communicate this to others. Example of mechanisms responsible for this outcome were the opportunity to learn about their CHD in a safe space through PCC. Personal control over the transfer to adult care and transition to adulthood led to the ability to manage their care. The mechanism responsible for this was meeting staff from adult care and thus becoming familiar with the physical and relational aspects of the transfer. Shared decision-making was facilitated through several mechanisms related to the power exchange between the adolescent and TC. For instance, the TC’s extended availability made the adolescents feel they could meet in an equal caring relationship. Finally, identity and the ability to enable others were achieved by getting to meet others in the same situation. Meeting others made the adolescents feel less lonely, that they were part of a community, and generated increased hope about adult life.

Process evaluations aim to explore which components of the intervention are more important in achieving the outcome [9]. Our study has identified several components considered pivotal in this achievement. However, the mechanisms are often the result of synergistic effects between components in a particular context, and this needs to be considered when understanding the findings [14, 30]. The most important contextual mechanisms were those created by the TC which interacted with most components in the programme. Our findings showed that continuity, confidentiality and being able to talk about sensitive issues in a safe space were pivotal for the adolescents. These needs have been expressed in preparatory studies [31‐33] and are considered an essential part of adolescent health [22, 23, 34]. Moreover, as empowerment can be seen as both a process and an outcome [13] the creation of an equal caring relationship that builds on PCC is an example of an empowering process where shared-decision making was one of the outcomes. Furthermore, health-related learning was evident in the results. Goal setting was most often related to learning about one’s CHD and how to communicate this to others. This finding might be especially common to adolescents with CHD, where disease-related knowledge is low [31, 35, 36]. However, the educational process and the provision of tailored learning strategies were a central aspect of this achievement. Indeed, active learning was one behaviour-change technique selected in the intervention development phase [18], indicating that this component was delivered successfully. Another important finding was the meaning of peer support. This component was experienced by many as most impactful. Transition interventions in other patient populations have shown similar results [37], highlighting the importance of meeting others with similar conditions. However, our results showed that there were some limitations in the delivery of this component. For instance, several participants did not attend the information day due to feeling uncomfortable about interacting with other adolescents’ with CHD. Previous studies have shown that adolescents lack of engagement in their illness affects study participation negatively [15]. In addition, group dynamic and not being able to identify with the role models during the information day were seen as shortcomings. Indeed, for role models to be effective the participant has to be able to identify with them [38, 39]. As the CHD population is diverse in regard to disease complexity and longevity throughout the life course [40], role models used in future transition interventions should consider this diversity.

Our findings showed that although most components were experienced positively and achieved increased empowerment, some were delivered insufficiently or did not receive the desired response. Parents did not consider themselves involved in the programme, which for some resulted in ambivalence about changing roles. As parents are an important resource in the adolescents’ transition to adulthood [41, 42] this can be considered as a shortcoming in the implementation of the programme. However, not all parents expressed the need for additional guidance. Tailoring to the family’s needs is therefore important for future studies. Another component that was poorly implemented according to the findings was the transfer meeting with adult care. A reason for the experienced asynchrony between the intervention and usual care might be that follow-up visits are defined according to CHD complexity, ranging from one to every three to five years [26]. Thus, the follow-up visit in usual care did not always synchronize with the transfer meeting in the intervention. Our findings therefore emphasize the need for a more person-centred approach towards transfer and transition, whereby follow-up visits are based on the patients’ health needs in addition to medical parameters.

Some methodological limitations must be addressed. Thirteen out of 27 adolescents and 8 out of 20 parents declined participation or were unreachable. The transferability of findings in relation to possible selection bias must therefore be considered, as the sample may have had more positive experiences of the intervention. The sample was nevertheless representative of the whole group of participants in the transition programme and had a variation in participation in the implementation steps of the program (Table 1). The use of various forms of interviews gave participants the opportunity to select their preferred medium of communication [27, 28] meaning a wide range of perspectives on the intervention were gathered. Recall bias may be considered another limitation, as the intervention period was 2.5 years and the interviews were performed after participation. However, the timing of interviews was appropriate, as performing them earlier may have affected the effectiveness evaluation due to this study being based on experiences and mechanisms leading to outcomes. We used method triangulation to deal with recall bias in our process evaluation [9, 43]. By using participatory observations, interviews and quantitative assessments of the components and implementation steps we aim to capture different aspects of the intervention in future studies [11].

In light of these limitations, our study has several strengths. Firstly, the use of intervention mapping (a proven intervention development framework) [44] facilitated the successful delivery of an intervention that reached the performance objectives stated in the logic model [18]. Moreover, the outcomes presented in this study respond to findings from the preparatory studies, which ensures credibility and transferability of our results [45]. Secondly, the findings of this study were analysed and reported before knowing the outcome of the effectiveness evaluation, thus avoiding biased interpretation of future findings [9]. As a result, this study generates a hypothesis on how the intervention worked and can shed light on mechanisms responsible for working towards the outcome, as well as components that were implemented poorly and can hamper outcomes. Thirdly, as parents have a central role in the transition [46, 47], including them in this study has identified moderating factors on the mechanisms of the transition programme and highlighted components that were insufficiently delivered. Moreover, using different interviewers for adolescent and parent interviews (i.e., investigator triangulation) allowed us to handle bias associated with using one principal interviewer [43], thus increasing dependability and credibility of findings [45]. Finally, by sampling participants with varied participation in the components and implementation steps of the programme, we gained perspectives on how the programme and its components were perceived. These findings are especially important for the implementation of transition programmes in other settings and populations.

This is the first study exploring the mechanisms of impact of a transition programme for adolescents with CC. Participants experienced increased empowerment in several dimensions of this construct and the change mechanisms have been illuminated. Consequently, a transition programme consisting of a transition coordinator trained in PCC and adolescent health, an educational process starting from the adolescents’ prerequisites and preferences and peer support are central aspects for empowering care in transition to adulthood. We should note, however, that support for parents was not delivered to a great extent. Although not all parents requested support, there were some with unmet needs that could have been addressed. For future implementation of transition programmes, these findings can inform how evidence-based behaviour-change techniques work in practice, as well as the challenges associated with delivering a complex intervention in combination with usual care.