Gathering expert opinion to inform benchmarks to support transitional care

Abstract

This study aimed to (1) explore views of known experts leading on transition, (2) gather insights on the essential features of transitional care models and (3) highlight opportunities for and barriers to change: to inform core elements of benchmarks for transitional care. We held three workshops ( n = 20) and used a telephone interview ( n = 1) with health and social care professionals with expertise working with young people with a range of health conditions and disabilities. The workshops included individual brainstorming and group discussion. Data were analysed using qualitative content analysis. The general consensus from stakeholders' discussions about transition was that 'things have become stuck'. Themes included: professionals' attitudes towards and knowledge about young people and transition, organizational barriers and 'lack of joined-up thinking' between services. Our work offers further insight into experts' perceptions of transition services within the United Kingdom. It is clear that there is still much to be done to improve transition, to better meet the needs of young people and parents and begin to offer equitable access to transitional care programmes. The benchmarks offer a starting point for professionals seeking to improve transition through enabling the identification of gaps in services and providing a platform to share successful practice initiatives.

Parents’ views on and need for an intervention during their chronically ill child’s transfer to adult care

“…These preconceptions give rise to an important question: Why do parents have these beliefs? An explanation could be that the paediatric staffs’ sparse knowledge of ,for example, workflows and challenges in adult care, may impact their attitudes and introduction to adult care and thereby posing a barrier to a successful transfer (Gray et al, 2015; Suzuki et al, 2020; Aldiss et al, 2019; O'Sullivan-Oliveira et al, 2014). Another explanation could be that some parents have a strong attachment to the paediatric department and are reluctant to leave (Wright et al, 2017; Fredericks et al, 2011).…”

The ethical and legal considerations of young people and their parents using a hospital patient portal: Hospital Ethics Committee members perspectives

“…Preparation is the key to successful transition, including empowering young people to take increasing ownership of their health data as they increase in autonomy and decision-making. 27…”

“…Preparation is the key to successful transition, including empowering young people to take increasing ownership of their health data as they increase in autonomy and decision-making. 27 Families need ongoing support whilst adapting to digital health technologies, including adapting to new ways of thinking with raw data (results) being released onto the portal. Communication with families prior to the release of results is advocated to reduce anxiety.…”

Nurses' and physicians' perspectives on implementation barriers and facilitators in a transfer program for parents of adolescents with chronic illness

“…The implementation of transitional care is challenging, and several barriers have been identified in the literature, including a lack of resources, time, and staff (Aldiss et al., 2019; Betz et al., 2022; Doucet et al., 2022). Furthermore, some healthcare professionals (HCPs) have identified parents as a barrier to a successful transition (Crawford et al., 2022; Prüfe et al., 2022), so implementing a parental transfer program might be challenging.…”