A complex transition: lessons learned as three young adults with complex care needs transition from an inpatient paediatric hospital to adult community residences

Abstract

Background: Whether young adults with complex care needs live at home with their family, in institutional or group home settings finding appropriate care as they transition from paediatric to adult systems can be difficult. Our objective was to understand the experiences, barriers and enablers entailed in transitioning three young adults with complex care needs from an institutional paediatric hospital setting to an adult community residence.

Method: A descriptive design involving in-depth, semi-structured, qualitative interviews and a review of 14 h of meeting minutes. Interviews were conducted over the phone, in participants' homes, and at a paediatric rehabilitation hospital. Twenty-three participants, including 10 clinicians, 11 community partners, two young adults (21-23 years old) with complex care needs from [metropolitan area] Ontario, Canada.

Results: Our findings indicate that clinicians, community partners and young adults with complex care needs encountered several enablers and barriers influencing their transition from a paediatric hospital to adult supportive housing. Enablers included structural factors (leadership, advocacy, timing/funding), availability of care (inter-agency partnerships), organization of care (model of care, inter-professional teamwork, extension of roles), and relational factors (communication, development of trust and rapport, family involvement). Barriers included structural factors (timing, funding), availability of care (appropriateness of housing), organization of care (changes in model of care, teamwork, role clarity), relational factors (communication, trust/rapport, family involvement) and personal factors (transition readiness).

Conclusions: There are several challenges to overcome in preparing long-term hospitalized young adults with complex care needs to transition to adult supportive housing; however, these challenges may be overcome with targeted supports in several key areas.

Keywords: complex care; inter-organizational partnership; rehabilitation; transition; youth.