Peer Support

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What are four benefits of peer-to-peer support for NICU parents?

  1. Parents may not feel comfortable opening up to medical professionals about their fears and anxieties; they feel more comfortable with someone who has a shared experience.
  2. NICU parents’ own support networks may not be available to them because of distance or time issues, and if they are, they may make the parents feel worse, as they may not understand the NICU experience or they may be grieving themselves.
  3. Peer support increases parents’ confidence, problem-solving ability, and acceptance of their situation, and helps them learn how to advocate for their babies.
  4. Parents who are geographically isolated, have few social resources, and have trouble arranging childcare may benefit from telephone support from a veteran NICU parent or an online community of parents in similar circumstances.

See a list of Peer-to-Peer support groups here.

Start with our document Starting and Sustaining a Peer Support Program for NICU Parents,  and then see additional resources for starting a support group here.

 


 

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Recommendations for Peer-to-Peer Support: Read just the recommendations by the Workgroup on Psychosocial Support of NICU Parents, or read the full article from the December, 2015 Supplement to Journal of Perinatology.

Bibliography on Peer and Family Support: This contains a comprehensive listing of references on peer support, compiled by the National Perinatal Association Workgroup on Recommendations for Psychosocial Support of NICU Parents.

Comparison of Types of Peer and Family Support:  If your NICU is trying to decide on what model of peer support program to implement, this document detailing advantages of different types of support (in-person, telephone, internet, group) could be helpful.

Glossary of NICU Terms for Parents:  A downloadable reference guide for parents containing information on “Who’s Who in the NICU,” a list of common terms, diagnoses and procedures NICU parents may encounter, and a brief list of medications used in the NICU.  Put together by website staff.

Hope for HIE: Info for Professionals: This is a brochure for a support organization for parents whose infants suffered from Hypoxic Ischemic Encephalopathy.

List of Parent Activities and Lunch-Learn Topics:  If you are developing a hospital peer support group, this contains ideas to get you started.

Caring for Parents, Caring for Ourselves – This is a presentation by Sue Hall, MD, MSW for the March of Dimes


 

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We know that peer-to-peer support offers unique and powerful benefits for parents. But don’t take our word for it. Hear from parents about the difference peer-to-peer support has made for them.

Why You Need a Support Group by Kathy McClelland at Preemie Babies 101, Hand to Hold’s blog written by parents for parents

What the World of Psychology Can Learn From the NICU Parent Support Community by Kara Wahlin, licensed Marriage and Family Therapist at NICU Healing

Welcome to the NICU Parent Club by Erika Goyer for Life After NICU

Taking Care of Yourself a resource by the Zoe Rose Memorial Foundation

The Elephant in the Room: The Reality of Preemie Dads’ Guilt by Joel Brens at Papas of Preemies

VIDEO Parents Share the Power of Peer Connections Hand to Hold shares testimonials from several mothers of preemies who share their experiences having a child born early in the neonatal intensive care unit (NICU) and the benefits of connecting with a peer who has shared similar experiences.

 


 

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Organizations

The are innumerable ways to support NICU parents, but among them peer-to-peer support is unique. Peer mentors offer comfort, understanding, and empathy. Additionally, the opportunity to talk to someone who has “walked in their shoes”  gives parents hope that they too can adjust, adapt, and thrive.  There are dozens of organizations created for – and by – parents.  Find out more about the resources in your community or start your own group.

Graham’s Foundation – “Peer Mentor Program focuses on providing resources and peer support to parents during and after their child’s NICU stay. Each of our volunteers has experienced the preemie journey and is available to chat by email or phone.”

Hand to Hold – “Hand to Hold carefully matches seasoned parents (Helping Hands) with a parent in need of support. These one-on-one relationships inspire hope and offer the chance to ask personal questions and receive support from someone who is uniquely familiar with the experience of preterm birth, life in the NICU, a child born with a special health care need, loss of pregnancy and/or infant loss.”

NICU Helping Hands – “NICU Helping Hands is pleased to provide support to families through our One-on-One Mentoring Program. Our organizations wants you to know that you are not alone during this difficult time and that we have former NICU parents who are trained and want to support you on this journey. Your mentor can offer hope and encouragement as well as answer questions that you may have now or in the future.”

Zoe Rose Memorial Foundation – “The Zoe Rose Memorial Foundation has a network of seasoned preemie parents available to connect with you one-on-one in a manner that is most convenient for you.”

See a longer list here.

See resources for starting a support group here.

 


 

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Are you interested in having someone speak to your staff, organization, or network about best practices in peer support? Click on the icon to go to our Speaker’s Bureau page to learn more about these speakers.

Jennifer Beatty, MSW, Program Director for Hand to Hold

Tawna Burton, March of Dimes Family Support Program Coordinator

Erika Goyer, National Perinatal Association, family advocate

Lisa Grubbs, Founder and President, NICU Helping Hands

Sue Hall, MD, Neonatologist

Becky Hatfield, Parent Support Specialist, Parent to Parent Program

Kelli Kelley, Founder and Executive Director, Hand to Hold

Donna Ryan, DNP, RN, Nurse

Keira Sorrells, Founder and Executive Director, Zoe Rose Memorial Foundation and Preemie Parent Alliance