Studies show that support groups can help most parents of children with CF to better cope with their situations. Gathering with others who share their experiences also helps parents define their roles in the healthcare process, improve their self-management skills and feel better about caring for their children.
For these reasons, families in the Cincinnati area came together to form a Parent-to-Parent Network. The goals of their network, like others, are three-fold:
|What You Need for a Successful Parent-to-Parent Network
- Support/help from your CF
- Designated parent coordinators
- Training for parent mentors in
communication, listening and
- Outreach to potential families in
- Confidentiality in the sharing of
- Clear understanding of infection
- Assistance from your care center
social worker and/or psychologist
- Evaluation of mentor experience
from both perspectives
In partnership with their care center, these parents rely on the following elements to maintain their successful network:
- Linking parents who share a common experience
- Offering support for day-to-day issues and more stressful times
- Decreasing isolation while offering hope
One-to-one support – Parents can receive personal support, particularly during stressful situations, from mentor parents who understand what they are facing. Chosen by the healthcare staff, the 12 diverse mentor parents received training in listening and other communication skills.
Quarterly newsletter – All families connected to the Cincinnati care center receive a quarterly parent-to-parent support newsletter. Created with a parent perspective, the newsletter provides uplifting stories, updates, self-management skills and tips to help parents feel motivated and successful.
Social functions – Twice a year, parents come together to share their experiences, strengths and hope. Parents connect with others to escape isolation and frustration while learning about successful care strategies.
“We Remember Together” Memorial Program – To acknowledge the loss of loved ones to CF, network parents plant a tree of the family’s choice at their home. The tree is a symbol to celebrate the life of the loved one, provide compassion and reduce feelings of isolation.
Make Your Own Connections
By starting a Parent-to-Parent Network, you can help to make a major difference in your life and the lives of others in your area. The following resources offer more information about how you can easily start and maintain a successful network:
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The Parent to Parent Handbook – Connecting Families of Children with Special Needs; Santelli, Becky, Poyadue, Florence and Young, Jane. Paul H. Brooks Publishing, 2001
National Center on Parent Directed Family Resource Centers
Beach Center on Families and Disability
University of Kansas