Parent Perception

Parents of chronically ill children overwhelmingly report that healthcare providers frequently contribute to their feelings of sadness, frustration and isolation. When healthcare providers do not recognize or understand chronic sorrow, it may add to the parents’ ongoing stress.

According to some research, parents feel that medical professionals do not provide enough information about their child’s chronic condition. They also want more practical information about how to care for their child and deal with the child’s condition. This lack of information, along with poor communication and insensitive comments, may contribute to parents’ sense of frustration.

Constant negative information about their chronically ill child may worsen the frequency and intensity of their grief. Parents and caregivers feel it is important to hear some positive feedback about their child. They need something to hold onto and will welcome a positive comment, no matter how small. Additionally, parents feel that if they express optimism, they may be labeled as being in denial. Parents and caregivers want healthcare providers to know that they are willing to live life without a roadmap, but they cannot endure a life without hope and dreams.

Parents want to be respected, understood and supported by the medical community. They don’t want to be in constant battle over their child’s rights. This can lead to a breakdown in trust and a lack of continuity in their child’s care.