Article

Youth with progressive conditions are living longer, and there is
increased health care focus on assisting them with "transitioning" to adult services and adult life.
The purpose of this investigation was to examine key
discourses and normative assumptions underpinning transitions best practices and
how they are reflected in the experiences of young men with Duchenne muscular
dystrophy (DMD). METHODS: Using a critical perspective, we qualitatively analyzed
influential transitions best practice documents to identify their underpinning
discursive assumptions. We compared these to the analysis of qualitative
interviews and diary data from a study of 11 young men with DMD. RESULTS:
Transitions best practices are underpinned by discourses of developmental
progression. They reproduce notions that associate successful transitions with
becoming as independent as possible, approximating normal life trajectories, and
planning for future adulthood. The accounts of youth with DMD both reflected and
resisted these future-oriented discourses in creative ways that maintained
positive personal identities. CONCLUSIONS: Normal developmental progression
towards typical adult roles constitutes the generally accepted aims of
transitions practices. Such aims may not be appropriate for all youth with
disabilities. We suggest that alternative understandings of the life course and
approaches to care need to be considered alongside dominant practices.
Implications for Rehabilitation Children and youth with progressive conditions,
such as DMD, are living longer and there is increased interest in designing
programs that will assist them with "transitioning" to adulthood. Transitions
best practices reflect dominant social values and assumptions about what
constitutes a successful adulthood, embedded in goals such as independent living,
self-management and obtaining work. Rehabilitation professionals should be aware
of both positive (e.g. feelings of achievement) and negative (e.g. anxiety about
the future) consequences of transitions practices that emphasize normal social
developmental trajectories and milestones. Discussions with youth should offer
multiple possibilities for living a good life in the present and provide support
to address negative feelings and the progressive effects of DMD.

Langue : ANGLAIS