Power is knowledge: empowering parents of children with cerebral visual impairment

Abstract

For parents of children with cerebral visual impairment, the greatest need during the diagnostic period is to gain knowledge about their child’s visual difficulties. Unfortunately, through lack of information, many parents are often left confused and unsure how to help their child. To better understand the impact this lack of information has in relation to empowering parents and helping them to confidently develop into parental advocates, parents of children with cerebral visual impairment were invited to participate in an online survey. Responses were received from nine different countries in North America, UK, Australasia and Europe. Information gathered included: parents’ experiences during the diagnostic period, their attainment of knowledge as their child developed and their level of empowerment in relation to the services their child receives. Findings suggest that parents who did receive information at time of diagnosis have more positive relationships with professionals, feel more empowered and are more confident in being parental advocates.

Points of interest

• Providing parents with information about cerebral visual impairment in a format that they are able to easily access at time of diagnosis helps parents to better understand the impact of this condition on their child’s development.

• When parents are provided with information about cerebral visual impairment that is relevant to their child, it helps them to develop the confidence to effectively advocate for their child’s needs by empowering them through knowledge and understanding.

• Providing parents with relevant information about their child’s visual difficulties helps them to further develop their understanding of cerebral visual impairment and therefore, is seen as a tool for further learning.

• When parents are provided with clear information about cerebral visual impairment in relation to their child, it helps them to cultivate collaborative relationships with professionals supporting their child.

Keywords:

• CVI
• knowledge attainment
• parental advocacy
• empowerment

Disclosure statement

No potential conflict of interest was reported by the author(s).