Stating that Parkinson's, which occurs in family members, especially in parents, can affect children emotionally, experts point out that giving information to the child in an age-appropriate way will reduce anxiety and give confidence. Emphasizing the importance of support for the child, experts underline that parental roles such as setting limits and disciplining must be maintained.
Parkinson's disease was determined as the theme this year by the World Federation of Neurology within the scope of World Brain Day on July 22.
Dr. Neriman Kilit, Child Adolescent Psychiatry Specialist at Üsküdar University NP Feneryolu Medical Center, said that the mental health of children with Parkinson's disease in their family can be affected.
Family and peer support is beneficial
Noting that support is important during this period, Neriman Kilit said, "Although there are not enough studies on psychiatric disorders that may occur in children whose parents have Parkinson's disease, it is a predictable fact that children may have a sense of sadness and loss along with worry and anxiety for their parents with Parkinson's disease. However, studies have shown that firstly, regular communication with the child about Parkinson's disease and the child's feelings, and secondly, offering family and peer support to meet the individual needs of each child is very helpful."
They want to understand the disease to feel confident
Noting that children have many questions about Parkinson's disease and adults may not be sure how much information to give, Kilit said:
"We may think that giving too much information is harmful because we may fear that it will be frightening or unpleasant. But surveys of children show the opposite. In fact, most children who have a parent with Parkinson's disease say that they do not have enough information and that a better understanding of Parkinson's disease would help them feel more confident. We need to remind ourselves that children are good observers and if a parent does not share the news about a diagnosis of Parkinson's disease, they may fear that something worse is happening. It is also important to remember that children do not have the same sources of information as adults, such as doctors and support groups. This means they often rely on family for accurate information.
Explain in an age-appropriate way
So what should we tell our children? The first rule to remember is to provide information using age-appropriate language. For example, all children need to know that Parkinson's is not fatal, that it is not self-inflicted and that Parkinson's is not contagious. However, depending on their questions, it seems useful to provide information about the symptoms and other aspects of Parkinson's disease at a level they can understand. It is also a very good approach to tell them that scientists are working to understand the causes of Parkinson's disease and to find new treatments, and to look hopeful. However, it is best to observe the changes in children if they want to experience it for a while, while at the same time maintaining a positive attitude and approach, letting them know that we can answer all their questions if they ask us, but not constantly pushing them when they need it. It should not be forgotten that the way each child shares and shows their emotions is different at different levels and different from each other."
The parenting role must be established
Neriman Kilit noted that it is very important for the parent with Parkinson's disease to maintain the parental role of setting limits and disciplining, and said: "A parent with Parkinson's disease does not mean that the child will be allowed to do everything. Children should be encouraged to talk about it with other relatives, teachers, psychiatrists if needed and especially with us. They should also be encouraged to help with Parkinson's disease-related charity and information-sharing organizations if they want to and if they are of age. Children should be helped to connect with their peers whose parents have Parkinson's disease."
The child should be told that they can direct their own life
Noting that children's behavioral changes after receiving this news should be well observed, Neriman Kilit said, "However, it should not be forgotten that children and especially adolescents themselves may go through other stressful life events and not every change should be attributed to Parkinson's disease. Children should be reassured that they can and even should have fun. Children should be told that they can manage their own lives. This is not only good behavior but also important for their healthy development."
Possible future changes should be discussed
Dr. Neriman Kilit said, "It is appropriate to have family meetings to talk about changes and discuss concerns arising from the parent with Parkinson's disease. It is also necessary to maintain family life by being flexible to the changes that occur. Consider providing counseling for your children, but make sure that the counselors you choose are counselors who have experience with children and/or young people."
