Transition readiness assessment in cerebral palsy: A qualitative descriptive study
Cristina A Sarmiento1, Hannah Friedman2, Chloe Glaros3
1Department of Physical Medicine and Rehabilitation, Division of Pediatric Rehabilitation Medicine, University of Colorado Anschutz School of Medicine, Aurora, CO, USA.
Aim:
To explore the utility of a commonly used transition readiness assessment tool (Transition Readiness Assessment Questionnaire [TRAQ]) among adults with cerebral palsy (CP) and caregivers.
Method:
This was a qualitative descriptive study using 21 semi-structured interviews (seven adults with CP, nine caregivers, five dyads) and matrix analysis.
Results:
Participants had many suggested edits to comprehensively assess transition readiness. Several adults with CP expressed that the tool appropriately assessed important skills for entering adulthood. Questions on managing medications and activities of daily living were identified as most relevant. However, caregivers found it difficult to answer questions as a caregiver and not the patient and felt that the tool was less applicable because they had been managing their child's needs for years. Distinguishing physical versus cognitive abilities presented another challenge because several participants noted that they or their child cognitively knew how to do certain tasks but were limited physically.
Interpretation:
Assessing transition readiness is an important part of the transition to adulthood. Individuals with CP have a wide range of abilities that may not be adequately captured by TRAQ. A CP-specific tool should be sure to distinguish between these varied abilities and clearly delineate the caregiver role for young people with varying levels of support needs.
