Medical Professionals
Communicating With Families
The findings of the eye examination and diagnosis should be discussed with the family. Parents of children with cortical visual impairment deserve more of an explanation of their child’s condition than, “The eye examination is normal. No glasses are necessary.” In the past, eye-care providers, including ophthalmologists, were often uncomfortable when dealing with the patient and family with a complex set of challenges. There was a perceived dismal prognosis with no hope of recovery. For an example of what families often experience, read this WebMD blog post.
Educational and resource materials should be provided. It is important to provide a list of websites with accurate information appropriate for the patient’s diagnosis, since many families primarily use the internet for medical information. It is also helpful to have pre-printed information ready to give families whose child has a common diagnosis.
Specific recommendations for treatment, interventions, and accommodations should be discussed with families, documented and given to families in writing as part of the discharge instructions. These recommendations can help the family and school until a full assessment can be made by the child’s vision team. Referral for services for visual impairment should be made so a full assessment and recommendations can be made by a teacher of the visually impaired, occupational therapist, or other member of a child’s team, as defined by the state where the child resides.
Example 1:
Recommendations for interventions and accommodations should be based on the patient’s level of function and characteristics of impairment present. Suggestions for a low-functioning, six-month-old, former preemie with periventricular leukomalacia and hypotonia in Phase I may include:
- Provide high-contrast, lighted, and moving visual stimuli.
- Avoid overstimulation.
- Provide support for body when performing visual tasks.
- Allow extra time for response to visual stimuli.
- Use auditory and tactile cues to attract and sustain visual attention.
Example 2:
Suggestions for a higher-functioning, school-age child with cerebral palsy in Phase III may include:
- Allow extra time for response to visual stimuli because of processing and expressive delay.
- Limit complexity and increase as tolerated.
- Avoid graphite pencil on recycled paper.
- Use black marker on white paper for written activities.
- Exploit auditory learning skills.
Children with a disability that interferes with educational progress who attend school accepting federal funds may qualify for an individualized educational plan, or IEP, under the Individuals with Disabilities Act. It is important to document these needs and communicate appropriately with the family and other members of the child’s multidisciplinary team.
It is imperative for the ophthalmologist to be an active and involved member of the team caring for a child with CVI. The ophthalmologist should provide diagnoses, referrals for services, treatment of ocular comorbidities, education, and advocacy for the patient. Interventions and accommodations allow the child with CVI to attain his or her fullest educational potential and maximize independence in activities of daily living.