Exploring the ICF-CY as a framework to inform transition programs from pediatric to adult healthcare.

OBJECTIVE

To explore the utility of the International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY) for informing transition-related programs for youth with chronic conditions moving into adult healthcare settings, using an exemplar spina bifida program.

METHODS

Semi-structured in-depth interviews were conducted with 53 participants (9 youth and 11 parents who participated in a spina bifida transition program, 12 young adults who did not, 12 clinicians, and 9 key informants involved in development/implementation). Interview transcripts were thematically analyzed, and then further coded using ICF-CY domain codes.

RESULTS

ICF-CY domains captured many key areas regarding individuals" transitions to adult care and adult functioning, but did not fully capture concepts of transition program experience, independence, and parents" role.

CONCLUSIONS

The ICF-CY framework captures some experiences of transitions to adult care, but should be considered in conjunction with other models that address issues outside of the domains covered by the ICF-CY.