How Palliative Care Helps Parents and Other Loved Ones
Pediatric palliative care recognizes that many people are affected by a child’s illness, especially parents, siblings and other family members. This also includes extended family, classmates and friends. Providing support for anyone in a sick child’s life is an important part of palliative care.
The team approach of palliative care addresses different needs and priorities and can be flexible as needs change. Some family members may benefit from referrals to individual or family counseling. Some siblings may receive support through pediatric therapies such as Child Life programs, art or music.
Many parents struggle with how to talk to their children about illness. Many siblings struggle as well. The palliative care team can provide guidance, resources and connections with appropriate resources for anyone involved in a child’s life, including the school and community.
For parents in particular, dealing with the complex medical system can be a difficult and troubling task. Many seriously ill children have many medical providers taking care of them, and receive treatment in more than one location. This can add to parents feeling overwhelmed and confused by the amount of information they are given.
Parents also struggle with making the “right” choice for their child and family. These decisions can range from practical issues—like whether to send a child to school during medical treatments—to more complicated ones about which medical treatments to try. By spending time getting to know the patient and family, the pediatric palliative care team can help them make decisions that are in line with their goals and values.
Jack is two-and-a-half-year-old boy who had meningitis as a baby and now has serious neurologic problems. In addition to his immediate family, he has a very loving extended family whose members are all very much a part of his life. When he gets sick and needs to come to the hospital, there are often ten or more people coming to visit and support him and his parents.
According to Jack’s mom, “The palliative care team is another form of support for me and my family. It makes me feel comforted to know that they are here for the whole family. No matter how many people are with us, the team will sit down with each of them just to see how they’re feeling or what they might need. They really help my family understand what is happening with Jack and support our decisions for him. It saves me from having to tell all these people the medical stuff.”
For additional resources (videos, podcasts, downloadable guides) about supporting the entire family (siblings, the marriage, grandparents, and extended family), visit https://courageousparentsnetwork.org/topics/unit-landing-page