Right after cancer diagnosis is a good time to set up a system for providing support to the family both immediately and long-term. The model presented here was established at the First Unitarian Church of Oakland and now serves as a pastoral care model for other types of family needs. The model does not need to be based in a religious institution, but can be replicated in a number of settings.
Who can be involved in helping a family?
- Extended family (aunts or uncles, sisters or brothers, grandparents, and cousins)
- A leader and/or members of the family’s temple, church, mosque, or other religious community
- A co-worker from the parents’ workplace(s)
- Representatives from the adult and/or children’s recreational activities including friends from clubs, card playing groups, bowling team, quilting group, the child’s soccer team, etc.
- An adult who knows the sibling(s) well, (soccer moms or coaches, piano teachers, neighbors, parents of friends)
- A parent from the child’s and/or sibling’s school or – in the case of older teens, a classmate
1. Identify a “point person” to coordinate everyone who wants to help out. This would be someone who knows the family well, and with whom the family has a trusting and comfortable relationship. This person should be someone who is in direct contact with the family. The role can be shared by a few people if a family has several willing and able supporters; in this case it is important to carefully define each person’s role. For the point person, this can be their main contribution, or maybe even their only task in helping the family, but it is a big responsibility. Choose someone who is very responsible and organized.
- This person should be someone who is willing to be in good communication with all parties, being available by computer, phone or in person. It is common that no one person will know all the family’s friends. That’s OK.
- Any new ideas or plans for helping should be coordinated through the point person.
- It is important that the point person check with the child’s parents about the kinds of help they need and avoid the kind of help that might not work for the family.
- While the point person may have updated medical information on the child, make sure the person knows what kinds of information the family wants to share with others. Also, remember that HIPPA policies do not allow anyone but the child’s parents to have access to the child’s medical records or for medical personnel to tell anyone else about the child’s medical situation. The point person may let others know this is the case, but that he or she will have the information the family wishes to have others know and will be glad to be called for an update.
The point person, in conversation with others, can develop his/her own system for coordinating care. There are new web-based programs that can be used to coordinate volunteers including: