This study looked at the support needs of Australian parents with children who have Type 1 Usher syndrome. Researchers interviewed parents to learn about their experiences and needs.
Four key support needs emerged: social, informational, practical, and emotional. Social support was crucial, especially connecting with other parents in similar situations. Informational needs included accurate, timely diagnoses and detailed guidance from knowledgeable professionals. Practically, parents required respite care, case coordination, flexible work hours, and financial support. Emotionally, parents needed help coping with grief, managing their child’s progressive vision loss, and finding appropriate mental health support.
What this means for Usher syndrome: The findings highlighted the various ways parents need support when caring for children with this condition and can provide crucial insight for healthcare professionals and policy-makers.
