Key themes of the study

Four key themes were identified as being central to the support needs of parents of children with Usher syndrome aged 0 to 5 years.

  1. Social Needs referred to parents’ need for various sources of social support
  2. Informational Needs described the lack of information parents received regarding Usher syndrome from treating professionals
  3. Practical Needs included supports needed to assist parents in managing the day-to-day tasks of caring for a child with a disability, and
  4. Emotional Needs represented the emotional support (both formal and informal) that parents needed to be a positive support to their child.