Impending Transition From Pediatric to Adult Health Services: A Qualitative Study of the Experiences of Adolescents With Eating Disorders and Their Caregivers

Abstract

Background: There is a dearth of research that identifies pediatric to adult health care transition practices that yield positive outcomes for young people with eating disorders (EDs). Further, adolescent and caregiver perspectives are poorly understood and underrepresented in the literature. The purpose of this study, focused on the impending transition from pediatric to adult health services, was twofold: (a) to identify adolescent and caregiver perspectives of barriers and facilitators of a successful transition for adolescents with EDs; and (b) to understand adolescent and caregiver suggestions of interventions for a successful transition.Design/Method: We recruited five adolescents with EDs who were about to be transferred out of pediatric care as well as their caregivers. We conducted a qualitative study in accordance with the principles of interpretive description. Through conducting semi-structured, in-depth interviews with adolescents and caregivers, we investigated their knowledge about health system transitions and anticipated experiences. We identified participants' perceptions of barriers and facilitators regarding a successful transition, as well as their recommendations to improve the transfer of care.Results: Participants possessed a limited understanding of transition processes despite the fact that they were about to be transferred to adult care. From our analyses, the following themes were identified as barriers during the transition process: re-explaining information to adult healthcare providers, lack of professional support while waiting for uptake into the adult health system, and late timing of transition of care discussions. Both adolescents and caregivers expressed that involvement of parents and the pediatric healthcare team helped to facilitate a successful transfer of care. In addition, participants expressed that the implementation of a Transition Coordinator and Transition Passport would be helpful in facilitating a seamless transfer between systems of care.Discussion: These findings demonstrate a significant gap in the system and highlight the importance of developing interventions that facilitate a successful transition. The themes that emerged from this study can inform the development of interventions to facilitate a coordinated transition from pediatric to adult health services for adolescents with EDs.

Adult and child and adolescent psychiatrists' experiences of transition in anorexia nervosa: a qualitative study

“…The only difference was the perceived lack of willingness from patients and families to get involved in adult care, which is the opposite of what our participants reported and could be due to the strong relationship between family and AN pointed out by our participants. The needs identified by our participants correspond to elements pinpointed as barriers to transition by patients and families in a recent qualitative study [ 18 ]: helping understanding the transition, anticipating the referral, involving the parents and the previous healthcare teams, increasing the support before entering adult services, etc.…”

A systematic review: Solutions to problems caused by age transition between eating disorder services

“…Second, discussions about transition should take place between CAMHS and AMHS at least 6 months before it occurs, accompanied by: (1) clear protocols and pathways related to transition, (2) a well‐structured, patient‐centred care plan, (3) formal handover of care in at least one specific multidisciplinary discharge planning meeting, (4) an overlap period of joint working by both services during the transitional phase, and (5) good working relationships between services and an understanding of each other's way of working. Additionally, it has been suggested that a transition co‐ordinator should be appointed, who could be a bridge between services, as well as the point of contact between the adolescent and the various health providers (Nadarajah et al., 2021). This would aid in better information provision and the need for increased communication highlighted by both parents and youth (Dimitropoulos et al., 2015; Lockertsen et al., 2021).…”

“…Parents viewed knowledge and support to be the key to a successful transition (Lockertsen et al., 2021; Wales et al., 2021). Adolescents, caregivers and clinicians suggest that the involvement of parents helps facilitate a successful transfer of care (Dimitropoulos et al., 2012; Nadarajah et al., 2021; Wales et al., 2022).…”

Improving the transition from paediatric to adult healthcare: a scoping review on the recommendations of young adults with lived experience

“…39 86 87 YAs have reported positive experiences in receiving transition coordinator services, provided they begin interacting with the coordinator early enough in the transition process to begin developing a trusting relationship. 88 Transition guidelines from Canada and the UK, along with recommendations from families, reiterate that this role can promote successful transitions. 14 23 89…”

“…39 86 87 YAs have reported positive experiences in receiving transition coordinator services, provided they begin interacting with the coordinator early enough in the transition process to begin developing a trusting relationship. 88 Transition guidelines from Canada and the UK, along with recommendations from families, reiterate that this role can promote successful transitions. 14 23 89 Providing YAs and their families with support in personalising and coordinating care is an important step in improving the transition from paediatric to adult healthcare; however, this review also underscores the importance of family and peer support.…”