There have been many strides over the years when it comes to treating childhood cancer. Many are surviving but some children will still die of their disease.
Parents of dying children have certain issues that are very important to them when going through the end of life process. The quality of care that is delivered at the end of life plays a critical role in the well-being of both child and parents prior to the child's death. It can also influence how the parents cope with their grief after losing their child.
Researchers surveyed 56 parents of children who had died in pediatric intensive care units in the Boston area. One of the most important aspects was that the care included honest and complete information. One woman noted "What we cannot handle is not knowing what is going on".
The parents need ready access to staff, communication and care coordination, emotional expression and support by staff. One parent said "Parents need to feel that people really care, not that it's just a job". Faith also played an important role when the parents said that chaplains and community clergy can be an important resource for parents.
The parents that were in the study were asked if they had any advice for other parents. Parents encouraged other parents to make decisions based on their own values and beliefs and to sustain hope, trust and love.
