Children born with birth injuries aren’t the only ones who suffer. Their parents often face financial, emotional, and social struggles caring for their children. The court system can sometimes help with the financial side, but more needs to be done to help support parents of children with severe CP according to a new report. Cerebral Palsy News Today explains.
The study examined the unmet needs of parents in children with severe CP. Few studies have been performed on the needs of the parents. A university in Malaysia interviewed nine parents of children with CP to talk about their unmet needs. These interviews were then studied for themes.
A major concern was a lack of information related to the disability, especially soon after diagnosis. Most of the parents had to get their information from the internet but would have preferred to have gotten it from health care providers.
Another complaint was the cost of rehabilitation equipment and wheelchairs, though many of the complaints about this were specific to Malaysia.
They also talked about their lack of emotional and spiritual support to deal with their circumstances. Many had stopped all traveling due to the challenges. There were no group programs or support groups in their area, though some did receive help from other parents.