Self-perceived and actual physical functional abilities in adults with cerebral palsy

Aim: To explore the self-perceived and actual physical functional abilities in individuals with cerebral palsy between the ages of 16 and 40 years with a view to develop potential self management strategies.

Literature background: Previous research has been inconclusive regarding potential deterioration of physical functional abilities in adults with cerebral palsy. One contributing factor is the use of different tools in the assessment of physical functional abilities, which can be broadly categorised as those assessing self-perceived abilities and actual abilities. This study was designed to explore the self-perceived and actual physical functional abilities in such individuals.

Method: Mixed methodology approach was utilised. Phase one involved a quantitative investigation of the relationship between self-perceived and actual physical functional abilities in adults with cerebral palsy. Phase two of the study utilised qualitative approach to critically explore the possible reasons for and means to reduce the differences between self-perceived and actual physical functional abilities. The findings from both these approaches was utilised to develop guidelines for potential long term management strategies for such individuals.

Findings: Seventeen participants participated in the phase one. Statistical analysis revealed that there are discrepancies between self-perceived and actual physical functional abilities, also there was correlation between selfreported Barthel Index and Barthel Index; self-reported Short-Form 36 version 2: physical component summary correlated with the Barthel Index. No correlation was found between the self-perceived abilities and Rivermead Mobility Index. Three participants were interviewed for phase two and four key themes emerged, namely coping strategy, self management, support and identity.

Conclusion: The study revealed that there are discrepancies between the self-perceived and actual physical functional abilities and it is essential for the health professionals to address these discrepancies. Adults with cerebral palsy are concerned regarding the changes in their physical functioning and would like to have appropriate specialist support. It is recommended that this is incorporated in the clinical guidance document and a national register is established to record the physical functioning in adults with cerebral palsy.