Affiliations: [a] Department of Pediatrics and Child Health, The Aga Khan University, Karachi, Pakistan | [b] Karachi Down Syndrome Program, Karachi, Pakistan | [c] Department of Community Health Sciences, The Aga Khan University, Karachi, Pakistan | [d] Department of Rehabilitation and Regenerative Medicine, Columbia University Medical Center, New York, NY, USA
Corresponding author: Zehra Habib-Hasan, Department of Pediatrics and Child Health, The Aga Khan University, Stadium Road PO Box 3500, Karachi, 74800, Pakistan. Tel.: +92 3008294414; E-mails: [email protected] or [email protected]
Abstract: PURPOSE: The aim of this study was to evaluate the feasibility and effectiveness of the Parent Empowerment Program (PEP) to help caretakers deliver a home program to promote developmental activities and gross motor function in their children with Down syndrome. METHODS: Parents attended a 14-month program with training sessions 1–4 times a month. Outcomes were measured using a change in the Gross Motor Function Measure (GMFM-88) at baseline and assessment one. RESULTS: Forty-eight families participated in the PEP. Children’s mean age was 16.2 ± 10.8 months. There were significant changes in GMFM-88 scores between baseline and assessment one; t (30) =-9.158, p< 0.001; 95% CI -14.6 – -22.9. Previous hospitalization significantly affected GMFM scores. CONCLUSION: This study describes a clinically applied research that focuses on program design, development and evaluation. Findings indicate that the PEP is effective in improving gross motor function in children with Down’s syndrome in Pakistan. Parents were satisfied with the program outcomes and were able to cope with the requirements at home. The PEP had favorable outcomes and may be an effective method to support PT services in resource poor countries.
Keywords: Down syndrome, Pakistan, parent education