Conference proceeding

Transition health services for youth with disabilities: A global perspective

Youth with disabilities are at risk of poor health outcomes as they transition to adult healthcare. Although space and place play an important role in accessing healthcare little is known about the spatial aspects of youth's transition from pediatric to adult healthcare.

To understand the spaces of well-being as youth with physical disabilities transition from pediatric to adult healthcare.

This study draws on a qualitative design involving 63 in-depth interviews with young adults (n = 22), parents (n = 17), and clinicians (n = 24) involved in preparing young adults for transition. All participants were recruited from a pediatric rehabilitation hospital within a metropolitan area of Ontario, Canada. Data were analyzed using an inductive content analysis approach that was informed by the spaces of well-being framework.

The results highlight that within the ‘spaces of capability’ those with more disability-related complications and/or those using a mobility device encountered challenges in their transition to adult care. The ‘spaces of security’ influencing youth's well-being during their transition included: temporary (in)security while they were away at college, and health (in)security. Most of the focus on youth's transition included ‘integrative spaces’, which can enhance or hinder their well-being. Such spaces included: spatial (dis)connections (distance to access care), embeddedness (family and community), physical access, and distance. Meanwhile, therapeutic spaces involved having spaces that youth were satisfied with and enhanced their well-being as they transitioned to adult care.

In applying the spaces of well-being framework, the findings showed that youth had varied experiences regarding spaces of capability, security, integrative, and therapeutic spaces.

Improving continuity of care is an important objective of various interventions and innovative programs for youngsters in vulnerable situations. Yet, the definition and conceptualization of continuity of youth care remains unclear, as well as important benefits and pitfalls regarding its implementation. Therefore, this study provides a systematic review of the literature, focusing on the conceptualization and evaluation of continuity. Database searches revealed 28 studies that focus on youth care interventions aimed at improving continuity of care. Selected studies were analyzed in Nvivo, using a three dimension model of continuity of care developed in general practice. Results show that continuity of care is rarely the central focus in youth services research. Moreover, its conceptualization is often limited to management aspects of continuity rather than highlighting other dimensions of continuity (e.g., relational and informational continuity). Also, experienced continuity of care as perceived by youngsters themselves is underrepresented in the selected studies, resulting in a partial view on continuity in youth care. It is concluded that more research is needed on youngsters' perceptions of continuity of youth services and its relational and information aspects, using qualitative study designs.

Young men with Duchenne muscular dystrophy (DMD) live into adulthood and need specialized care. However, services for adults are fragmented. We know little about young men's experiences, their parents, and clinicians who support them as they transition to adult care.

To explore the enablers and barriers of clinicians, young men, and parents as they transition from an adult DMD clinic within a pediatric hospital to an adult health facility.

We conducted semi-structured, in-depth interviews with 16 participants (7 clinicians, 5 parents, 4 youth). We used an open-coding, thematic approach to analyze the data.

Clinicians, youth and their parents experienced several enablers and barriers in transitioning to an adult health care center. Clinicians reported that structural factors including leadership and advocacy supported the transition. Clinicians and parents found that the availability and continuity of care both enabled and hindered the transition. Parents and youth conveyed the difficulties of adjusting to the different model of adult care and also accessing resources. All participants described how relational factors (i.e., effective communication and family involvement) enabled the transition. On an individual level, clinicians, parents and youth viewed transition readiness and other life skill supports as an enabler and a barrier to transitioning. All participants reported the difficulties of maintaining mental health for youth with DMD transitioning to adult health care.

Clinicians, youth, and parents experienced several enablers and barriers in transitioning to adult health care. Further work is needed to understand the complex transition needs of youth with DMD.

To explore the attitudes of adolescents and parents toward transition care and to identify factors and barriers associated with transition decision.

The study was conducted at a pediatric out-patient clinic using a self-administered questionnaire to evaluate the perspective of adolescent chronic patients on transition care for common chronic diseases. Despite its importance as emphasized in medical literature, transition care for adolescent patients with chronic illnesses is under-developed in Hong Kong.

A total of 137 adolescents aged 16–19 years, and 67 parents completed the survey; 85.3% of adolescents and 82.5% of parents were willing to transfer to adult care. “Adolescent's perception of his/her own responsibility towards chronic illness” was positively associated with willingness to transfer to adult care (OR = 3.84; 95% CI, 1.41–10.45; p = .008), whereas “Detailed explanation by doctors” encouraged transition decision for adolescents (OR = 12.20; 95% CI, 1.22–122.33; p = .033). “Do not want to change” was the only significant barrier for transition for both adolescents (OR = .08; 95% CI, .01–.50; p = .007) and parents (OR = .07; 95% CI, .02–.36; p = .001). However, less than 10% of subjects had ever received any transition information from doctors or other healthcare workers.

This is the first study in Asia region evaluating attitudes of adolescents and parents on transition care. The majority of adolescents and parents accept transition care from pediatrics to adult service, but only a small proportion has ever received transition information from doctors. Our findings should be useful to healthcare providers in planning transition care programmes for adolescent patients with chronic illnesses.

Young NL, Gilbert TK, McCormick A, Ayling-Campos A, Boydell K, Law M, Fehlings DL, Mukherjee S, Wedge JH, Williams JI. Youth and young adults with cerebral palsy: their use of physician and hospital services.

To examine patterns of health care utilization among youth and young adults who have cerebral palsy (CP) and to provide information to guide the development of health services for adults who have CP.

This study analyzed health insurance data for outpatient physician visits and hospital admissions for a 4-year period.

Six children’s treatment centers in Ontario, Canada.

The sample included 587 youth and 477 adults with CP identified from health records. Youths were 13 to 17 years of age, and adults were 23 to 32 years of age at the end of the data range.

Not applicable.

We computed the annual rates of outpatient physician visits and hospitalizations per 1000 persons and compared these with rates for the general population.

Annual rates of outpatient physician visits were 6052 for youth and 6404 for adults with CP, 2.2 times and 1.9 times higher, respectively, than rates for age-matched peers (P<.01). Specialists provided 28.4% of youth visits but only 18.8% of adult visits. Annual hospital admission rates were 180 for youth and 98 for adults with CP, 4.3 times and 10.6 times higher, respectively, than rates for age-matched peers (P<.01).

It appears that youth and adults with CP continue to have complex care needs and rely heavily on the health care system. Comprehensive services are essential to support their health as they move into youth and adulthood. However, there appear to be gaps in the adult health care system, such as limited access to specialist physicians.