Why start a Charity/Support Group?
Having a premature baby or a sick full term baby in NICU or SCN is a very traumatic, stressful and emotional time for parents, siblings and even extended family members. Most of the time, family and friends don’t know what to say or how to help. Parents of premature and intensive/special care babies have been actively seeking out other parents who have been through the NICU/SCN experience. They do this mostly through internet forums, as this is usually their only way to find other parents in similar situations. This shows the desire parents have to share their stories, be heard, be truly listened to and understood.
Parent support groups enable parents of babies in hospital to talk to, and share their feelings with other parents who have been there, know what it’s like and know the range of emotions you feel, from guilt, anger, and loss to joy, happiness and pride at the smallest milestone reached. A shoulder to cry on can sometimes be the most comforting thing. We want all of our fellow NICU and SCN parents to know they are not alone. To know someone really cares about what they are going through and understands what they are feeling.
The parent support groups that are operating now are very much welcomed by hospitals and parents. We hope to see them operating all over the country so that all of our fellow NICU/SCN parents can be supported, heal a little and be surrounded by our caring and friendly community, during their hospital stay and afterwards.
A support groups benefits the hospital in a number of ways. Below are some examples.
- - Staff will be able to focus more of their attention to patient care
- - Money saved by not having to employ extra personnel to deal with family support issues
- - Showing families and general public that you value family care
- - Opportunity to raise profile of your unit through the activities of your support group (fundraising, media, etc)
- - Opportunity to improve your model of family care by representation on relevant hospital committees
- - Equipment and resources can be purchased with money from fundraising
What do charity/support groups provide?
The support group can do as much or as little as you decide. It is up to you and the volunteers to decide what role the group plays in the unit. Below are some ideas of how support groups can help.
- - Have a roster of official hospital volunteers who visit the NICU/SU to speak to parents who express the desire to do so
- - Host regular morning teas at the hospital
- - Take phone calls from parents wanting to talk
- - Run a group website
- - Host an annual picnic for families
- - Hold fundraising events to raise money for their unit
- - Raise awareness in the local community about prematurity and their NICU and SCN.
- - Hold regular playgroups
- - Coordinate knitters and sewers
- - Provide newsletters and other practical support
Some of our support groups provide the following
- - Money for equipment and other needs
- - Gifts for parents on special occasions (Mother’s and Fathers Day, etc.)
- - Babies first outfit to keep
- - NICU/SCN Handbook or “Survival Guide”
How NPF can help?
Our member groups have a combined total of 47 years experience in supporting families, working in and with hospitals, liaising with media and the local community and raising awareness about prematurity.
Julie Clarke, founder of NNICUPS was instrumental in the set up of another NSW support group. Julie and other members will be on hand to provide assistance and guidance with paper work involved in registration and set-up, organizing internal structures of the group, liaising with hospital staff and implementing parent support programs and initiatives.
The NPF will provide ongoing support to all groups through the sharing of “best practice”, resources, ideas, information, and by helping to attract members and volunteers. We will also raise awareness about groups, raise money for family support and information, hospital equipment and education.