Congratulations to Dominique Poncelin and the French Association on the publication of their study regarding the burden of caregivers in AHC.
Caregiver’s burden and psychosocial issues in alternating hemiplegia of childhood Original Research Article: European Journal of Paediatric Neurology, Volume 17, Issue 5, September 2013, Pages 515-521 Jessica Save, Dominique Poncelin, Stéphane Auvin Here is the abstract:
Alternating hemiplegia of childhood (AHC) is rare disorder characterised by recurrent attacks of hemiplegia followed by developmental delay. We investigated the parental perceptions and psychosocial issues of AHC. Using a questionnaire sent to the French AHC association, we investigated families’ concerns and needs of support. Additionally, we evaluated the impact of this disease.
We analysed 47 questionnaires from 30 families. At time of diagnosis, the concern of the parents was highest for the hemiplegic spells and abnormal eye movements. These concerns decreased over time. The highest concern at the time of the study was the outcome of the patients with an emphasis on cognitive consequences and the level of autonomy. The results showed that AHC has a significant impact on families.
Our data enhance how the explanation of the disease by healthcare professional is important. This study also highlights the need for family support over time.
Best regards to you all
President AFHA (French AHC