Forming a Caring Group: A Model for Communities to Help


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.

Who can be involved in helping a family?
  • Extended family (aunts or uncles, sisters or brothers, grandparents, and cousins)
  • Neighbors
  • Friends
  • 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

Getting Started

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:

http://www.volunteerspot.com/    

https://www.lotsahelpinghands.com/ 

http://www.mylifeline.org/  

 

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/ 

At the meeting there are a number of things that can occur.

  • Introductions: The point person is encouraged to take the lead and introduce participants to one another.
  • Choose a method of coordinating help for the family that works best for the care team, such as talking by phone, meeting in person at the school bus stop, using email, or other face-to-face times.
  • Develop a plan for communication with the wider community surrounding the family. For example, someone might volunteer to notify extended family and friends. Again, work with the family to know what they want conveyed and to whom. For example, how broadly or narrowly does the family want the school and community informed of what is happening and how the child is doing. Do they want just a specified list of people informed? At school, do they want just the teachers informed or also parents in the child’s classroom?
  • Discuss family needs. The point person should establish a framework of support. First, identify the family’s needs (with the understanding that there are many uncertainties). Someone might be designated to keep a list, paying attention to all members of the family. What support will the siblings need, especially during the busy days at the start of the treatment when parents are stressed and often absent. What will siblings need over the course of the treatment? Are siblings involved in clubs, sports, or after-school programs?   What will the father need? Will he be managing the home responsibilities alone with the siblings? Will he be balancing work and family? Is the mother out of town, in the hospital, or driving back and forth between home and the hospital? Are the parents planning to trade off nights? What role do the grandparents, aunts and uncles, and other extended family play? Does the mother need someone to talk to, to exercise with, or to give her for a break from the hospital?
  • Define each person’s roles and responsibilities. Designate someone to lead each of the major categories of needed help, including:
    • cooking
    • shopping
    • carpooling or childcare for siblings
    • help when the child comes home from the hospital (house cleaning, errands to the pharmacy)
    • visits to the hospital
    • fundraising
    • website and computer support (computers can become a critical link for communication and some families need help with web pages, web searches for information, setting up Skype and web cameras or software set-up) and
    • providing homework and school news and updates from parents who have children in the same classes as the survivor and/or siblings
     
  • Set up the next meeting time and place before ending.

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.

 

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