Institute for Patient- and Family-Centered Care
Transforming health care through partnerships

Family Support Network™ of Eastern North Carolina
(FSN-ENC) at Vidant Health

Vidant Medical CenterFamily Support Network of Eastern North Carolina

The Family Support Network of Eastern North Carolina (FSN-ENC) is an affiliate of the state Family Support Program at the University of North Carolina and a member of Parent to Parent USA, an alliance of over 37 statewide parent-to-parent organizations. The Family Support Network of Eastern North Carolina, Inc. provides emotional support and resource information for families who have a child with a disability, chronic illness, premature birth, and for families who have experienced the death of a child.

FSN-ENC started offering peer support to families in the NICU at Vidant Medical Center James and Connie Maynard Children's Hospital, the only Level III neonatal intensive care unit in eastern North Carolina in 1987. Today, FSN-ENC is contracted by Vidant Medical Center to serve all units of the Women's Center and the James and Connie Maynard Children's Hospital. In addition to offering peer support, Brenda Boberg, Executive Director of FSN-ENC, and her staff attend multidisciplinary rounds and medical rounds on all units including NICU, Pediatric Intensive Care, Pediatric, Women's Center ante partum patient, and Labor & Delivery.

Structure

FSN-ENC strategies and goals are to ensure that all families in the area have the opportunity to receive emotional support and resource information. All activities engaged in are to enhance the Peer Program. If an activity does not help parents of children born prematurely, or parents of children with diagnosed conditions or special needs, FSN-ENC does not participate.

Initially, members of the Peer Mentoring Program planning team were parents, physicians, nurses, and the Early Intervention Director. Currently, Family Support Network of Eastern NC has staff members who work 40 hours per week and are paid between $24,900 - $52,000 annually. In addition, student interns help in the hospital every semester. FSN-ENC has trained mentor programs and also coordinates services with other agencies, such as the County Department of Social Services, Early Intervention, etc. The educational degrees of the staff are varied, and may include education, family community services, or religion. Sometimes the staff members are parents who have relevant life experiences instead of specific educational degrees. One employee is trained in Triple P Parenting. The FSN-ENC program is financially supported by a contract with the hospital, as well as grants and an annual fundraiser.

Supervision of the volunteer peer mentors is on going, and the FSN-ENC Board of Directors and a hospital liaison supervise the director. Quarterly reports are submitted to the Nursing Administrator of Children's, and the Vice President of the Women's and Children's department, and the Quality Department. All FSN-ENC staff chart in electronic records and are held to the same standards of accountability as hospital staff. For example, FSN-ENC staff members have yearly annual reviews, must comply with the annual requirements of JCAHO, are HIPPA trained, and must complete all other computer module trainings that are mandatory to work in the hospital. The director meets with the FSN-ENC Board of Directors monthly and the executive committee as needed, at least monthly. Executive Director of FSN-ENC, Brenda Boberg, reports to the Nursing Administrator at James & Connie Maynard Children's Hospital. All contracted FSN-ENC staff are treated as hospital employees.

Coordination

Peer Mentor Programs started at FSN-ENC in 1987. The foundation of the program was and still is One to One Matching. In addition, in the NICU there is a group scrapbooking activity for mothers and fathers, which includes aspects of one to one and group support.

Currently, there are 100 volunteer peer mentors in FSN-ENC's database, 50 of whom are active. In 2013, support was provided to 1,142 new families by FSN-ENC staff and volunteers. FSN-ENC provides for Neonatal Intensive Care, Special Care Nursery (step down from NICU), Pediatrics, Pediatric Rehab, Pediatric Intensive Care, Labor and Delivery, and Women's Center. Peer mentors can also go to the adult trauma floors when appropriate; for example, if a mother was in an accident, and is pregnant or has children in the Children's Hospital. FSN-ENC staff can be requested by outpatient or ambulatory care if needed, and can provide support in the community after discharge from the hospital.

The criteria for a family to be matched with peer support are straightforward-any family that has a child with a disability, chronic illness, premature birth, or families who have experienced the death of a child. Referrals from obstetricians for mothers who learn that the baby they are carrying has a genetic chromosome or other anomaly have increased over the past few years. Some FSN-ENC staff members are certified in Pediatric End of Life, Grief Share, and Resolve through Sharing.

Volunteer peer mentors are recruited from professionals and families that the staff meets in the hospital or community. Once recruited, peer mentors go through 6 to 8 hours of training, depending on the number of parents in attendance, and participate in on-going training throughout the year. Additional peer education is periodically offered. FSN-ENC staff members match the trained parent mentors based on the need of the referral. Matching may be based on a similar diagnosis, or if a family is more interested in information or resources, the matching will based on those needs.

Peer mentors are to contact families within 48 hours if at all possible. Depending upon the need of the family, the staff at FSN-ENC may hear from the mentor after the first contact. Staff members ask the mentor to report how the match is going after the fourth contact. In the absence of such a report, the staff will call and/or email the mentor and the referral to gain perspective on the effectiveness of a match. Emailing is a more effective means of communication than the telephone. Referred parents often ask that the volunteer mentor contact them by email allowing them to respond at a convenient time. After two or three attempts to contact a referred parent who does not answer, the mentor is asked to report back to the FSN-ENC staff for their follow up with the referred parent.

The program is dedicated to networking within the community and surrounding area to refer families if more intensive intervention is required. For example, families will be referred to Family Therapy Programs if the family is having marital problems. Peer Mentors are trained to listen, to provide a sounding board for referred parents. When referred parents are having spiritual debates due to their current situation they can be referred to a chaplain or a minister of their faith. Mentors are trained to listen, ask open-ended questions, and help families voice their fears, joys, and expectations. FSN-ENC staff respects the time and qualifications of their volunteers. FSN-ENC staff will address the psychosocial support needed more intensely than volunteers are expected to do. Once a month a neonatologist and an FSN-ENC staff person have a meeting with families to prepare them for "Life after Discharge." Topics discussed include what to be aware of medically, and services available in the community, such as Early Intervention.

Peer mentors are celebrated and families recognized at an annual meeting held in conjunction with the annual fundraiser. Families may be given a certificate of appreciation, or an item symbolizing their dedication or contribution to families. Two years ago, FSN-ENC invited their very first parent match-made twenty-seven years ago-to the fundraiser to be recognized for their continued support to others. Although asked to tell their story of how they were matched, when they saw each other, and began to try to speak, they both just stood with tears streaming down their faces overwhelmed with emotions.

The FSN-ENC Board of Directors evaluates the FSN-ENC's Peer Program yearly. Referred parents receive surveys to learn their opinions on the effectiveness of Peer Mentoring. Directors also evaluate employees on their effectiveness of working with families. During ongoing conversations, matches are discussed to learn what works and what does not work, with an eye toward improving the matching and mentoring process.

The current fiscal climate in North Carolina has affected all the Regional Programs in North Carolina. FSN-ENC has all lost staff due to the loss of state funded activities through Early Intervention. As a result, there is a foundation being set up to support the program in the future. The foundation is the Staton L. Cummings and George T. Pate Sr. Family Support Network of Eastern NC Foundation. Local funding is continuously sought, as is funding for North Carolina Regional Programs. The regional Family Support Network Programs are in the process of establishing the North Carolina Parent to Parent, made up of the Regional Family Support Programs, which will help retain more of the money coming from grants, instead of having high percentages taken by the universities, etc. This year the Regional Programs are working on 501(c)3 status. The local programs believe there is strength in working together to ensure support for all families in North Carolina.

Brenda Boberg
Executive Director Family Support Network of Eastern North Carolina
Women's Center & Children's Hospital
Brenda.Boberg@vidanthealth.com
BrendaFamilySupport@gmail.com
252.847-5120
252.917-4110