Peer to Peer Support

Peer to Peer Support is a way for mesothelioma patients and care givers to provide mutual support to each other in a mutually beneficial relationship.

Introduce yourself and let them know that you are calling as a volunteer of the Foundation.  You are representing the Foundation you have all the support of the Foundation.  The staff will be willing to assist you in any way to make your peer to peer counseling successful.

Exchange phone numbers and email address at this time.  If you think that they might benefit by speaking with another patient that you are familiar with please again let the medical liaison know prior to making this referral.

Make a note of the time zone as this can get confusing when you have a number of people that you are in touch with.

Try not to juggle too many individuals at once, you have your own burdens as well and though this is a mutually beneficial exercise we all need time and distance.  It is not quantity but quality of the interactions.

It is most beneficial when a session is prearranged so time can be set aside for this purpose.

You must agree to remain neutral, providing positive support only.

In this role you are not judgmental or critical and do not give advice.  It is meant to be a sharing of experience both yours and the individuals.  Do not undermine their relationship with their physician, be supportive and listen and ask if you can share this information with the Medical Liaison should you suspect a problem.

Medical referrals should also go through the Foundation.  Not every doctor or treatment is right for everyone.  If you feel that the person is in crisis refer them back to the Medical Liaison for intervention.  It is easy to get in over your head and this can lead to a poor outcome.

The person who is listening does not direct the conversation but allows those in need to express emotions providing a safe release for this exchange.  Many have no one to express their inner feelings as they often feel that they must remain strong for the patient or caregiver Allow ample time for these calls and reschedule if a conflict is anticipated that might interrupt the session.There is an ongoing agreement of complete confidentiality.

You may not “click” with this individual, if this is the case let the medical liaison know and she will reassign them.  It is not a failure on your part just human nature.  It also might be a reflection of the situation or crisis this individual might be experiencing.

If your circumstance changes and you cannot be “there” for this person due to a change in your circumstances be honest with them and let us know so we can assign someone else to provide support during your absence.

Listening Skills

Take your time, allow the person you are supporting to speak fully and feely without interruption

Let them know that you are really listening.  Rephrase and direct a question back.  This can help to clarify what the individual is thinking and help to generate discussion on a particular topic that they might be having difficulty with.

Keep a calendar and write in important dates, their next chemo treatment, follow up appointment or Ct scans.  Knowing that you are truly interested helps to develop and foster the relationship.

Take care of yourself as well.  It can be very difficult when the person you have been assisting progresses on treatment or if they die from this disease.  Let the Foundation know when these events occur so we can assist not only you but the patient or family member of your peer.

~Mary Hesdorffer, NP