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Adapted from Family Caregiver Alliance, http://www.caregiver.org/factsheets/family_mtgC.htm

Providing care for someone with health needs is more than a one-person job.  You may need to ask friends, neighbors, and other family members to pitch in.  Even if others do not provide direct care, the time that you spend in caregiving may impact their lives.  For these reasons, holding a family meeting can be very useful to help meet the patient's needs and help others to understand the care situation and its impact on their lives.  Sometimes, doctors and nurses conduct family meetings when the patient first gets sick (or with changes in the patient's health), so that all members of the family understand the diagnosis and treatment.  Other times, family meetings are led by the patient's main caregiver to inform the family what is going to be involved in providing care.  Either way, family meetings are a good way to keep everyone informed and involved, and to make sure everyone has a chance to voice their opinions.  Not all family meetings go as smoothly as you would like.  Anger over the patient's health, bad past relationships, and poor communication can make holding a meeting tough.  Here are some tips to help you along:

When should we have a family meeting?

You should have a meeting when you start to provide care (when the patient is diagnosed or before he/she leaves the hospital).  Meetings should also be held when there are changes in the patient's health (such as, the patient is no longer able to drive, which will limit their ability to shop, go to the doctor, and other daily activities).  Some families meet on a regular basis, every 3 or 6 months.  They use this time to spot any patient needs that are not being met and to talk about how providing care impacts their personal lives.

Who should be at a family meeting?

  • Anyone who will be providing care should be invited, such as family members and close friends and neighbors.  Don't forget to invite paid caregivers such as nurses or aides.  Sometimes, it's easier to have someone "outside the family" lead the meeting – a social worker, pastor, or nurse.  They may be better at keeping the meeting focused on the subject at hand, and may be more objective, which will help you meet your goals.
     
  • A big decision in planning a family meeting is whether the patient should be there.  Patients may want to be at the meeting because it makes them feel like a part of the team and gives them a chance to voice their thoughts and needs.  On the other hand, family members and friends may not want to share their thoughts and feelings if the patient is there.  If the patient has mental problems (trouble remembering things or delusions), it may be better to hold the meeting without the patient and then fill them in after.  Whether or not you include the patient, sit down with him/her both before and after the meeting to make sure that they have a voice in what is discussed.

 The nuts and bolts of a family meeting.

  • Hold the family meeting at a neutral and comfortable place.  This could be someone's home, office, a diner, or you may want to ask the patient's doctor if he/she has a room you could use.  Pick a place that is quiet and where you won't be interrupted.  Ask people to turn off their cell phones or put them on vibrate.  If family members or friends with kids will be there, have a sitter watch them in a different part of the house.  Having food on hand is a good idea, but limit the amount of alcohol you serve (or don't serve any at all).
     
  • Each member of the team brings his or her own ideas and issues to a family meeting.  Having an agenda (and giving it out before the meeting) is a good way to keep everyone focused.  Jot down all the things you think should be discussed.  Put the most important items first. 
     
  • It's easy to get caught up and spend your entire time on one topic.  Try to put a time limit on each item (for example, "we'll talk for 20 minutes about money and then we need to move on to helping with housework"), and have someone in charge of keeping track of time.  If a family member is taking over the conversation, remind him/her of the time limit. This is one time that it may help to have an "outside person" lead the meeting. 
     
  • You will most likely be talking about a lot of issues, so have someone in charge of "taking notes".  This person should write down the decisions that are made and what tasks are assigned to each person.  After the meeting, make copies of the notes and make sure everyone gets one.  This makes sure everyone is on the same page.

Difficult situations and difficult people

Family meetings can be tough because family members often bring a lot of issues with them that don't relate to providing care.  For example, two sisters may be fighting and may use the family meeting as a chance to vent their anger with each other.  If you are faced with this challenge, using an "outside person" to lead the meeting can be helpful.  Talk to this person before the meeting and tell them what things you would like to talk about.  Give them a list and a little background about past relationships and troubles so that they can prevent bad feelings from getting out of control.

Communicating.

One of the most difficult things about family meetings is learning how to communicate well.  It takes a lot of practice, and is sometimes harder to do with family members than with strangers.  A list of tips is included here.  It might be helpful to make a copy of these and give them to the people who will be at the meeting.

  • Use "I" statements when talking with others. "I feel…" or "I need…."
     
  • Check to make sure that what you said to someone was heard correctly. Ask them to repeat it back to you.
     
  • If you are nervous telling others what you need, write it down and hand it to them.
     
  • Practice saying what you want to in front of a mirror. Saying it out loud to yourself may help you to say it out loud to others.
     
  • Look people in the eye when you are talking to them, hold your head and shoulders up.
     
  • Watch how you hold your body when you tell people what you think. Don't hold your arms around your chest, as if hugging yourself.

End result.

  • It would be great if you were able to solve all of the care problems, meet all of the patient's needs, and everyone went away happy.  This is not always the case, and it may be too much to hope that everyone will be happy or that all the issues will be resolved in one sitting.  Stress that family members may need to find a middle ground.  If two people have set ideas, try to come up with ways that both agree to.  If you can't do this, agree to try it one way for a month and then set a time to meet and talk about how things are working.
     
  • Be clear at the end on what decisions you have made.  Go back over each agenda item and state what the family has agreed upon.  Then, write it down and give everyone a copy or mail them a copy after the meeting.  When you have your next meeting, pull your notes back out and review how things have gone.

Although family meetings can be hard, they are a good way to pull together and support the patient.  Don't be afraid to ask for help with meetings and don't expect that everything will be solved all at once.  Providing care is an ongoing task.  Pulling the family together to provide that care is also ongoing.

For more information:

  • Contact your health care providers or ask your nurse to refer you to a counselor.
  • Contact the National Cancer Institute at 1-800-4-CANCER or through the Internet at: http://cancernet.nci.nih.gov
  • Contact the American Cancer Society at 1-800-ACS-2345 or through the Internet at: http://www.cancer.org/
  • Contact the National Coalition for Cancer Survivors at 1-888-YES-NCCS or through the Internet at: http://www.cansearch.org/

Visit the Family Care Research Program at: http://www.healthteam.msu.edu/fcrp.