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Parents for Parents was started by a group of mothers, interested in helping other families who have ride the emotional roller coaster of having a child admitted to the Newborn intensive care unit. A 10-year history was published in April of 2002 summarizing the journey of developing an active network of involved parents.
Parents For Parents Summary - A 10-year History
By Kris Green
April 2002
Charter Parents
Janelle Pfleiger, Lisa Curtis, Becky Copeland, and Kris Green
Charter Providence Support Staff
Dr. Jack Jacobs, Christy McMurran, and Diana Bement
Key Parent volunteers in 10-year history
Shari Selzer, Katie (Parrish) Middleton, Cathy Collier, Suzanne Wheatall, Sheila Harris, Mike Shibe, and George Rooney
Key supporting staff in 10-year history
Leah Holman, Stephanie Birch, Leslie Lancaster
1991 (October)
Social Worker, Christy McMurran and FCC, Diana Bement invites parents to meet and discuss the creation of a parent support program
1992
Developed logo; wrote mission statement (to offer support and information to current families with an infant requiring special care at birth); created volunteer parent coordinator's role; set up office space and files; met once a month
Goals:
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To provide emotional support and encouragement to parents of premature or sick infants while the baby is in the hospital and after the baby goes home.
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To facilitate communication between parents and health professionals
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To serve as advocates for NICU infants and their parents
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To recruit, train, educate, and support volunteer parents to enable them to use their NICU experience for a positive result
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To enhance public awareness of the special needs of families with premature and high-risk infants
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Potential for other program development:
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Telephone hotline
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Parent support packets at admission and discharge
Specific projects and ideas that volunteers worked on included:
- Parent Newsletter- Seasonal decorations at every crib
- Lending of books, toys, and special equipment
- Create library
- Host special events: picnics, holiday, or birthday parties, reunion, or Easter egg hunt
- Give premature baby book to every parent
- Create congratulation gift bags or tee shirts (to normalize birth for parents)
- Support group
- Gift for every holiday
- In-service for professionals
- Sibling packets
- Birthday card to every graduate
The first training was a held May 30th, 1992. Recruitment mail-out to former families within 3-year window. Nine parents trained by Christy and Diana. In addition to parent matches prioritized improvement of parent discharge packets; reorganized pump room to have information brochures and parenting books. New goals included a newsletter, sibling packets; in-service for staff; host reunion
An article by Ann Chandonnet from Anchorage Times, January 16, 1992 was published that discussed issues of special support needed for NICU parent graduates. On October 28, 1992 in a letter to Dr. Jacobs, Parents for parents recommended the hiring of a parent support coordinator. A total of 9 parent volunteers donated over 210 hours.
1993 /94
Parent volunteers were asked to sit on a panel to educate staff on the issues associated with "The Other Side of the Crib." A survey was conducted by volunteers, asking nursing staff what they thought would be helpful. In addition, key staff and physicians were interviewed. This served as a guide for volunteers to initiate approval of bedside support without referral. It was approved by Dr. Jack Jacob.
A Parents for Parents (PFP) bulletin board was started and volunteers hosted the annual NICU reunion. A baby calendar as a gift for every parent was developed and given out. There was a dramatic increase in parent bedside support hours - over 600 hours in the 2 years by 16 volunteers.
1995
During this year, social worker, staff and parents worked together to create binder for staff to use to make direct referrals to matching parents. A formal plan was developed by parents to approach administration with a request to fund parent support position. Through a graduate level class, a grant was outlined seeking funding. Providence was unable to support position due to focus on building Children's Hospital. Volunteers were encouraged to continue, but volunteer energy waned significantly. The 13 volunteers still listed worked only a 100 hours.
1996
The efforts to build a children's hospital are well under way. During this time, PFP volunteers were asked to participate in panel on Family-centered care with Bev Johnson (president of the Institute for Family Centered Care). PFP struggles with burnout and felt leaderless. The matching parent program and consistent bedside support had limited offerings and only a small number of volunteers (2) attempted to cover the need. This year, only 60 hours are documented.
1997
Discussions initiated by Children's Hospital (TCHAP) administration, now freed up from the demands of fundraising and building plans to support PFP program development with intention to hire a paid parent support person in 98. The actual physical plant renovations for the Children's Hospital at Providence were started. Volunteers continued to provide parent match, newsletter production, and limited bedside support. A total number of 21 hopeful volunteers donated 110 hours this year.
1998
With the support of TCHAP administrators, a Family Advisory Council (FAC) organized and met in meeting in May. The paid parent position (first brought up by parents in 1993) was considered top priority. The position was posted and and the paid Parent and Community Coordinator was hired in September. The Coordinator assumed all responsibilities for stabilizing volunteer program, increasing recruits and retention, and enhancing program development. The total number of volunteers is still 21 and the provided just over 120 hours of time.
1999
- Under the parent leadership, parent matching increased with daily presence of Coordinator in unit suggesting offers of support to nursing staff, physicians, and parents.
- A Family Resource Library was created to help families understand needs of pre-term and sick newborns; computer network of Internet web sites helped families with research.
- The Family Action Council, (name formally changed at suggestion of Administrator to reflect that parents are not in outside advisory position, but active members in action) a parent board, helps to give credibility and voice to PFP is daily integration into unit.
- Adopted and expanded PFP model to Peds/PICU and Children's Cancer Center - offering parent matches and support
- Volunteer number differentiated as PFP and FAC. However, overlap and dual support to parents and families recognized.
Parent volunteers nearly double to 35, delivering 480 hours of volunteer energy and family to family support success.
2000
PFP volunteers invited for active participation in planning remodel of NICU. They attend education, planning, and developmental council meetings. A PFP satellite is started in Fairbanks. Community-based volunteer group to work with Fairbanks memorial to offer support to families with pre-term infants in Fbks and transport to Anchorage. Parent volunteers, now counting 42, deliver 590 hours of volunteer time.
2001
PFP increased hours, communication support, and program planning of construction and remodel. A training, set for early January increases volunteers. The Parent Coordinator is invited to present at pre-conference workshop for the National Perinatal Association conference on "Outstanding Parent Support Programs." The PFP training manual is re-written and parent support network after 10-years is finally seen as an integral part of the Children's Hospital delivery of service. Fifty-four volunteers provide 605 document hours.
2002
A new parent manual is developed for families at the bedside, monthly meetings keep PFP volunteers appraised of construction developments and support increased visibility in NICU. The Parent Coordinator presented at National Graven Conference Plenary Session on "Blazing New Trails: Parent Support Networks." New new parent are cultivated to match for families in NICU and PICU who have chosen to discontinue life support due to conditions incompatible with life. Parent is screened, trained, and will be available for matches in summer of 2002. The Institute for Family-centered Care Conference on "Innovative Parent support Programs" recruits a speaker for the October 2002 conference. A busy year, nearly 1500 hours were committed by parent volunteers across all the service and program lines.
Over 4300 volunteer hours in this 10-year history documents the journey and role of parent influence in the development of program and policy support in the Children's Hospital.
In addition to providing bedside support or special event planning, the parent coordinator is seeking specific help on these special projects:
- Assistant newsletter editor
- Writer (newsletter articles, brochures, and publications.)
- Creative Crafter (monthly gifts, homemade birthday cards, etc.)
- Special gifts (first birthday cards and baby shower gifts)
- Computer support (databases, web design, and maintenance)
- Marketing and recruitment
- Special events planner (NICU reunion, sibling party, Santa Day, etc.)
- Administrative support (copying, filing, collating materials, and making phone calls)
- Fundraising (tee-shirts, posters, etc.)
Please call Kris Green at 261-5895 or contact her at Kgreen1@provak.org for more information on how to get involved.
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