Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers

Abstract

Action is required to cross the chasm between paediatric and adult-oriented care. Preparation for transition should start early and focus on strengthening adolescents' independency without undermining parental involvement. Building bridges between services, gaining trust and investing in new personal relations is a challenge for all parties involved: transition is about responding and bonding.

Transition from child to adult care in an outpatient clinic for adolescents with juvenile idiopathic arthritis: An inductive qualitative study

“…Transition is a planned and structured process involving medical, psychosocial and educational needs of adolescents moving from child to adult care (Blum et al., 1993). It is well described that adolescents and parents often feel inadequately prepared for this transition (Fegran, Hall, Uhrenfeldt, Aagaard, & Ludvigsen, 2014; Kirk, 2008; Östlie, Dale, & Möller, 2007; Reiss, Gibson, & Walker, 2005; Shaw, Southwood, & McDonagh, 2004; Tuchmann, Slap, & Britto, 2008; van Staa, Jedeloo, van Meeteren, & Latour, 2011). This may result in adolescents with less contact to the healthcare system, reduced adherence to treatment and poorer clinical outcome (Coulson, Hanson, & Foster, 2014).…”

“…Studies show that problems arising in the transition are multifactorial and may be caused by poor communication between HPs in child and adult care (Östlie et al., 2007; Reiss et al., 2005; van Staa et al., 2011), inadequate knowledge about specific needs of adolescents among HPs in adult care (Fegran et al., 2014; Reiss et al., 2005; Shaw et al., 2004; Tuchmann et al., 2008) and a delay in the preparation of the transition (Östlie et al., 2007). Furthermore, challenges in transition may be related to cultural differences between the services of care, for example, family‐centred care versus individual care (Fegran et al., 2014; Reiss et al., 2005; van Staa et al., 2011), and developmental challenges in the physical, cognitive and psychosocial domains related to adolescence (Östlie, Johansson, & Möller, 2009).…”

“…Furthermore, challenges in transition may be related to cultural differences between the services of care, for example, family‐centred care versus individual care (Fegran et al., 2014; Reiss et al., 2005; van Staa et al., 2011), and developmental challenges in the physical, cognitive and psychosocial domains related to adolescence (Östlie, Johansson, & Möller, 2009). Besides, the roles between the adolescents and parents change during this period.…”

“…Besides, the roles between the adolescents and parents change during this period. The adolescent assumes more responsibility, implying that parents need to step aside (Fegran et al., 2014; Östlie et al., 2007; Shaw et al., 2004; van Staa et al., 2011). Gaining trust in the adolescents can be challenging for parents (van Staa et al., 2011) and they generally feel that it is their responsibility that the child receives the best health care (Shaw et al., 2004).…”

“…Furthermore, van Staa et al. (2011) emphasised that parents felt insecure about leaving the trusted environment.…”