Research Paper
Enablers and barriers of men with Duchenne muscular dystrophy transitioning from an adult clinic within a pediatric hospital

https://doi.org/10.1016/j.dhjo.2016.10.002Get rights and content

Abstract

Background

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.

Objective

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.

Methods

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.

Results

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.

Conclusions

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.

Section snippets

Study design

Using an interpretive paradigm,29, 30 we conducted in-depth, semi-structured interviews31 with recently transitioned young adults with DMD and/or their parents, and clinicians involved in their transition. Our objective was to explore the enablers and barriers of young men, and/or their parents who recently transitioned from an adult DMD clinic within a pediatric hospital to adult health care center, along with clinicians who support them. We conducted interviews (see Supplementary Table 1 for

Results

Clinicians, young men with DMD, and their caregivers reported several enablers and barriers in transitioning from the adult DMD clinic within the pediatric hospital to the adult health care center. We organized our results based on key transition principles32, 33, 34, 35, 36 while outlining enablers and barriers within each category (see Table 3 for overview of themes).

Discussion

Our findings show that youth with DMD, their parents, and clinicians experienced several enablers and barriers in transitioning from an adult DMD clinic within a pediatric hospital to an adult health care center. Structural factors that enabled the transition included dedicated leadership and advocacy at both the pediatric and adult health care center. Other research on DMD similarly shows that multi-agency partnerships can help make a positive difference in the lives of young men with DMD and

Conclusions

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. Parents and clinicians found that the availability of care and continuity of care acted as both an enabler and a barrier to transitioning. Parents and youth described the difficulties of adjusting to the different model of adult care, and accessing equipment and

Acknowledgements

We would like to thank the participants who took part in the study and also the support from the staff and volunteers in the TRAIL lab.

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    Disclosure: The authors report no conflicts of interest.

    This study was funded by the Centre for Leadership in Child Development at Holland Bloorview Kids Rehabilitation Hospital.

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