Transition from school to adult services for young people with severe or profound intellectual disability: A systematic review utilizing framework synthesis

Abstract

Themes reflect the complex nature of the question what adulthood should look like for individuals with severe or profound intellectual disability. There is a lack of involvement of multiple stakeholders and young people themselves within studies.

Il Dopo di Noi: nuove alleanze tra pedagogia speciale ed economia per nuovi spazi di Qualità di Vita

“…Tra le traiettorie pedagogiche che possono essere indirizzate ai caregiver che si preparano al percorso di distacco del "Dopo di Noi" menzioniamo un possibile lavoro parent training pedagogico per lo sviluppo di strategie di coping da attuare nel "Durante Noi". Prendere parte a specifiche forme di sostegno per condividere con altri genitori informazioni sui processi di transizione ai servizi dell'età adulta (Jacobs, MacMahon & Quayle, 2018) rappresenta, infatti, una delle possibili occasioni di anticipazione del progetto di vita del giovane adulto con disabilità. In tale direzione la promozione di atteggiamenti proattivi (Zafroni & Maggiolini, 2018), attraverso percorsi di consulenza genitoriale e/o di automutuo aiuto, contribuisce a pensarsi all'interno di un rapporto in divenire e in costante evoluzione.…”

Innovations in framework synthesis as a systematic review method

“…While these were considered current for the publication of the PhD, it has been suggested that systematic reviews should be ideally updated to one year before publication for interventions 72 . Given that this review used rigorous, transparent, systematic methods and more recently published reviews and guidance have not suggested newer uses of framework synthesis [73][74][75] , it is likely that the data underpinning these findings are representative of the method's current use 76 .…”

Who decides? – transitions from school to adult services for and with young people with severe intellectual disabilities

“…The transition from school to adult services has been described as the "black hole" (Doran, 2011) in the lives of individuals with intellectual disability and research has highlighted the need to improve practices in the UK (Stalker & Moscardini, 2012;Cox, 2017;Hudson, 2006). This study builds on a systematic review concerning this transition for young people with severe intellectual disability (Jacobs et al, 2018). The pathway to adulthood often differs for these young people (DeZonia, 2008;Simmons & Watson, 2014) and emerging adulthood can highlight the tension inherent in the gap between the individuals' abilities, possibilities and the acquisition of adult status (Jacobs & MacMahon, 2017;Pilnicket al, 2010Pilnicket al, , 2011Biswas et al, 2016).…”

“…Within the transition to adult services, research shows that external factors have a significant influence on decision-making. Decisions are made by statutory services and families, and policies and resources available in local areas play crucial roles (Jacobs et al, 2018;Hardy et al, 2005;Lenehan, 2017). An ecological understanding to transitions has been shown promising in mapping facilitators and barriers across systems (Small et al, 2013).…”

“…Bronfenbrenner's (1979) ecological framework captures how change happens in an interdependent and relational manner. Jacobs et al (2018) utilised an ecological perspective to data synthesis in their systematic review but the influences of wider systems were only tentatively sketched. It was hoped that using the ecological framework for both data collection and analysis in this study would achieve a deeper understanding of intersections between culture, policy, economy, organizational practices, local resources and the lived experience of those affected, particularly at current times of austerity (Hardy et al, 2005;Mansell, 2010;Power & Bartlett, 2018;Stalker & Moscardini, 2012).…”