Development of a Complex Intervention to Support Parents of Chronically Ill Adolescents in Transition From Pediatrics to Adult Care (ParTNer-STEPs)

Background Transfer from pediatric to adult care for chronically ill adolescents is associated with outpatient non-attendance and low treatment adherence in adolescents, and with anxiety and concerns among parents. Recent studies have shown that parent involvement results in better transitions. The aim of this paper was to describe the development, through participatory design, of a brief transition program targeted to parents of chronically ill adolescents.Methods The study was based on the UK Medical Research Council’s (MRC) framework on developing and testing complex interventions. To increase the program’s feasibility and relevance, participatory design was chosen as the overall method. A collaboration group of parents, adolescents and health care professionals (HCP) were actively involved in the development of the program. The program was developed in three development stages, in accordance with the MRC framework: 1) identifying the evidence base, 2) identifying theory, and 3) modelling process and outcomes. Results Together with the collaboration group, we developed a brief transition program targeting parents, by undertaking an iterative process, involving a literature review, individual interviews, workshops, online brainstorms and multiple pilot tests. The program, called ParTNer-STEPs (Parents in Transition – a Nurse-led Support and Transfer Educational Program) comprised three components: 1) an informative website, 2) online educational events for parents, and 3) transfer consultations with providers from both pediatrics and adult care.Conclusions The MRC framework was successfully applied to develop a brief transition program targeting parents of chronically ill adolescents. By incorporating the principles of participatory design in the development phase, we ensured that both parents’ and adolescents’ needs were represented and addressed in the program. Furthermore, the involvement of HCPs ensured the feasibility and relevance of the intervention in clinical practice and will increase the chances of successful implementation.Trial registration ClinicalTrials.gov ID NCT04969328

Translanguaging pathways to higher education: a transition program for highly educated refugees

The paper focuses on translanguaging practices of highly skilled refugees in a transition program in Dutch higher education. The pathways for refugees to enter higher education are full of obstacles. Acquiring the new language at a university level is one of the biggest challenges. Many institutions offer ‘transition programs’ to prepare refugees for their studies. These are mostly focused on acquiring language skills and general basic skills in subjects such as Mathematics and Cultural Diversity. The Dutch transition program described in this paper was specifically developed to make use of students’ multilingual repertoires. The resource-oriented pedagogy of translanguaging is used to give space to all languages, leverage students’ resources and contribute to their academic and language development. In this research, data from one year of the Dutch transition program was collected to study a) how teachers engage in official translanguaging practices during instruction and b) to what extent teachers develop other practices to engage with their students’ multilingual repertoires. Results from interaction analysis show that the teachers, although mainly using the language of instruction (Dutch), did use a variety of translanguaging practices, and created other ways to encourage students’ multilingualism, such as engaging in language comparisons and raising language awareness.

P.018 The Ottawa Epilepsy Program: region-wide coordinated and multidisciplinary care in the 21st century

Background: Epilepsy is the most common chronic neurological illness worldwide, affecting more than 330, 000 people in Canada, 10, 000 of which reside in the Ottawa area. Despite facing higher mortality, stigma and social barriers, PLE (people living with epilepsy) incur treatment gaps even in high income countries like ours. Our goal was to address this burden locally with the creation of novel, community-integrated, care delivery for PLE in our area; we describe its inception. Methods: A transition program bridging pediatric and adult institutions was created to address the care continuity gap in 2017. Following a meeting of key stakeholders in the region in 2019, the community group was integrated into the model of care and the city-wide program was created incorporating adult, pediatric, transition and community pillars. A patient friendly website was launched in 2020 (ottawaepilepsyprogram.ca). Results: 170 patients were followed in the transition program since 2017. Adult and pediatric pillars have referred 70 patients to the community program between 2019-2020, 48 between 2020-2021. Through this, PLE are able to access the Clinic to community (C2C) and UPLIFT programs for social support services and mental health, respectively. Conclusions: An interconnected region-wide program can support PLE and foster innovative care integration across disciplines.

Quantum information distance

In this paper, we give a definition for quantum information distance. In the classical setting, information distance between two classical strings is developed based on classical Kolmogorov complexity. It is defined as the length of a shortest transition program between these two strings in a universal Turing machine. We define the quantum information distance based on Berthiaume et al.’s quantum Kolmogorov complexity. The quantum information distance between qubit strings is defined as the length of the shortest quantum transition program between these two qubit strings in a universal quantum Turing machine. We show that our definition of quantum information distance is invariant under the choice of the underlying quantum Turing machine.

Implementation fidelity of a transition program for adolescents with congenital heart disease: the STEPSTONES project

Background Although transition programs have been evaluated for adolescents with chronic conditions, these have rarely involved process evaluations investigating the implementation process. The aim of this study was to evaluate the extent to which a transition program for adolescents with congenital heart disease was delivered as intended. Research questions were 1) to what level of fidelity was the program delivered? and 2) what potential moderating factors affected the delivery of the program and overall fidelity? Methods A mixed methods design was used, where a process evaluation was embedded in the STEPSTONES randomized controlled trial in Sweden. The implementation fidelity framework by Carrol (2007) and Hasson (2010) was used to design, collect and analyze data. Quantitative data consisted of intervention records on adherence and were analyzed with descriptive statistics. Qualitative data on moderators affecting fidelity were collected through interviews, log-books and focus group interviews with healthcare professionals implementing the intervention and participatory observations of the implementation process. Data were analyzed with deductive content analysis. Triangulation was used to integrate quantitative and qualitative data within the fidelity framework. Results Six out of eight components of the transition program were delivered to an extent that adhered to the program theory or achieved a high level of fidelity. However, components involving peer support had a low attendance by the participating sample (32.2%), and the joint transfer meeting was challenging to implement, despite achieving high adherence. Moderators affecting the implementation process were the adolescent’s and healthcare professional’s engagement in the intervention, contextual factors and a lack of standard operating procedures for all components in the program. Conclusion Barriers and facilitators for a future implementation of transition programs have been illuminated in this study. The use of an implementation fidelity framework in the process evaluation proved successful in providing a comprehensive evaluation of factors affecting the implementation process. However, implementation fidelity must be considered in relation to adaptations to the local and personal prerequisites in order to create interventions that can achieve fit.