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"Our Nurse Practicioner told me early on that the most flexible families are the successful families..."
- Annie Gould, parent
Right after 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.
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.
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:
2. Hold a meeting. If possible, do this within the first few days after diagnosis. Of course, this meeting can happen at any time during treatment as well. The point person, working with the parents, can identify and invite representatives from the various areas of the family’s life listed above. Find out whom the family wants to have involved and if there is anybody they would prefer not be involved. Imagine that the family is the hub of a wheel and the different people or groups in the community surrounding the family are the spokes of that wheel who will be participating in helping. You can use free websites to schedule meetings such as http://www.doodle.com/ or http://www.meetingwizard.com/
3. Check in with one another: Plan to have the team check in with each other on a regular basis. As time goes on and treatment changes, the needs of the family will change.
Remember, cancer treatment is a marathon, not a sprint.
It is common to have many willing volunteers during the first few months after a cancer diagnosis. It is harder to sustain support over time. Sometimes families want more privacy from the start or after a period of time and decide to go it alone and decline continued support. Sometimes families want support over the long term. Either way, the team should respect the family wishes, while also understanding the limitations on volunteers’ time. Since treatment can extend for many years, it can be good for the point person to check in with the parents periodically and reassess their needs. It is also important to know that there are quiet times when things are going well which can be interrupted with medical emergencies. At these times, volunteer help is again appreciated.
The time following completion of treatment also can be stressful for families as they begin to transition back into usual routines, often with awareness that things are not the same as they were before the cancer. Even though the child with cancer may be in remission, the family may be dealing with continued stressors such as going back to school, parents returning to work while managing continued medical appointments, paying bills and managing insurance claims, and house repairs that were delayed.
Continuing to offer some support and services can be very helpful during this time. While the concrete tasks, like cooking meals, may not be needed as often, walks or babysitting to support a night out may still be very appreciated by families as they face the challenges of beginning new routines. The point person can sit down and revisit the family circumstances and to adapt to their changing needs. The point person can also help the family keep a list of who has contributed and identify a way to express the family’s thanks to those people.