They described the physical and neurological consequences of the illness on their infected child as well as the psychological impact on each member of the family. Caregivers expressed hope about the improvements in medications and treatments. However, many also described the complexities surrounding medical treatments. Caregivers shared their concern for transmission to others and how they went to great lengths to minimize this risk. They also spoke of the need for, and expectation of, the use of universal precautions in schools.
Families know that they are most happy when together.
They described strong connections to each other and how these connections gave them courage and made them strong. Caregivers also discussed their need for human connections with others. Caregiver Recommendations Our discussion with families concluded with 28 recommendations for the school systems. Very little is known about what school systems and their personnel perceive they may be doing to meet the needs of these families. A detailed review of policies, as well as in-depth interviews with school personnel would allow for understanding of what is expected and what is occurring.