Because parents of newly diagnosed children have trouble describing their needs, researchers spoke with a group of parents who have been through the experience and asked them what types of support helped the most. They outlined the following suggestions.
Notify people about the family situation: Gather phone numbers and emails of everyone who needs to be notified. Designate one person to call, email or write everyone on the list to let them know about the new cancer diagnosis. The message should be reviewed by a family member for what is said and how it is said. If the family is setting up a website, blog, or other electronic communications tool, let people know so they have a way to stay in touch. The message can include a person who can be contacted for updates or to help out. Remember that HIPPA regulations do not permit medical personnel to talk to people outside the family without permission.
Set up a cooking schedule. Many families really appreciate having meals delivered since it can be very difficult to find time to shop and cook. Often, if the main cook in the family is in the hospital with the child, the remaining family appreciates having home-cooked meals. Some families like food every day, others prefer meals delivered two or three times a week. The coordinator can set up a calendar. Because families are not always home, it works well if cooks can leave meals in a cooler on the front porch or by the back door. Ask the family whether they like the cook to ring the bell and say hello or not. This will vary depending on how busy they are, fear of infection or other factors. Try to use recyclable leftover containers and let cooks know you do not expect them to return the containers to you. Or, a family member can leave washed containers by the cooler to be picked up by their owners. Remember to be sensitive to food preferences, cultural or religious food restrictions, and allergies. These should be described to those who volunteer to cook and can be easily shared among those coordinating the meals, on the websites, via email, etc. It’s also good to allow cooks to see what others have prepared to avoid making the same food multiple days in a row. The coordinator can create schedules using sample forms here, or can use online resources, such as a shared Google calendar or a program where people can sign up to cook and receive a reminder. There are a number of websites to help a community organize meals for a family when someone is sick that allow you to include the family’s food preferences, address, and the names of who is cooking for them, and when.
Carpools: It is important that the healthy children in the family are able to carry on with their usual routine. Siblings might need a ride to and from school. If a child in the family routinely plays soccer, takes piano lessons, or comes home late from a relative’s house, after-school program, church, or work, she or he might need a ride. It may also be helpful to bring a brother or sister to the hospital for a brief visit so the parents can stay there, but still see their healthy children and all be together. Visits by siblings are usually better as short visits. Your driving them may help these visits to happen more frequently so the family feels less torn between children and hospital-based responsibilities.
School: If there is a parent of a child who has children in the same class as the patient and/or his or her siblings, that parent can periodically update the family on the issues in the classroom, keeping the family in the loop about school activities at a time when it is easy to miss such news.