Families with more than one handicapped child

Area of Science:

• Medical Genetics
• Pediatric Neurology
• Family Studies

Background:

• Families with multiple handicapped children present complex clinical and social challenges.
• Understanding the patterns of disability and service utilization is crucial for effective support.

Purpose of the Study:

• To investigate clinical patterns, etiological factors, and service utilization in families with more than one handicapped child.
• To identify gaps in diagnosis, genetic counseling, and social support.

Main Methods:

• Retrospective review of case notes for 40 families with multiple affected children.
• Parental interviews (90% consent) to gather data on diagnosis, investigations, counseling, and social circumstances.

Main Results:

• 31 families had children with the same disorder, but only 9 had a specific diagnosis.
• Non-specific mental retardation was the most frequent condition affecting 40 children.
• Out of 673 investigations, only 14 yielded a diagnosis; genetic counseling was provided to only 19 families.

Conclusions:

• Diagnostic clarity and access to genetic counseling remain significant challenges for families with multiple handicapped children.
• Despite challenges, 32 families remained stable units, with some receiving financial aid (attendance allowances) and respite care.