Abstract
BackgroundDuring the past decade there has been some evaluation of transition programmes for adolescents with chronic conditions. However, this has rarely involved process evaluations focusing on mechanisms leading to outcomes, thus hampering implementation of these complex interventions. Our aim was to (I) describe adolescents’ and parents’ experiences of participating in a person-centred transition programme aiming to empower them in transition to adulthood and (II) explore the mechanisms of impact.MethodsA qualitative process evaluation was performed, embedded in a randomized controlled trial evaluating the effectiveness of a transition programme for adolescents with congenital heart disease in Sweden. A purposive sample of 14 adolescents and 12 parents randomized to the intervention group were interviewed after participation in the programme. Data were analysed deductively and inductively in NVivo v12.ResultsExperiences of participation in the transition programme were generally positive. Meeting a transition coordinator trained in person-centred care and adolescent health and embarking on an educational process based on the adolescents’ prerequisites in combination with peer support were considered key change mechanisms. However, support to parents were not sufficient for some participants, resulting in ambivalence about changing roles and the unmet needs of parents who required additional support.ConclusionsParticipants experienced increased empowerment in several dimensions of this construct, thus demonstrating that the transition programme was largely implemented as intended and the evidence-based behaviour-change techniques used proved effective in reaching the outcome. These findings can inform future implementation of transition programmes and illuminate challenges associated with delivering a complex intervention for adolescents with chronic conditions.
Highlights
During the past decade there has been some evaluation of transition programmes for adolescents with chronic conditions
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
These programmes have been evaluated through randomized controlled trials (RCT), showing positive results in patient-reported outcomes [5], as well as in reducing delay in transfer to adult care [6, 7]
Summary
During the past decade there has been some evaluation of transition programmes for adolescents with chronic conditions. 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 selfmanagement) [5], as well as in reducing delay in transfer to adult care [6, 7]. None of these RCTs have published process evaluation studies explaining the mechanisms that led to these outcomes [8]. 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
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