Peer Support for Parents of babies born premature or sick

How important is peer support for parents of babies born premature or sick?

Life's Little Treasures FoundationIn surveys conducted at the 2014 and 2015, Life’s Little Treasures Foundation Walk for Prems parents provided feedback on their experience of accessing support through Life’s Little Treasures Foundation (LLTF) peer support service while in the hospital and the community. The 120 respondents, surveyed nationally,  were parents of premature and sick babies; their babies may have spent time in either NICU, SCN or both.

Some of the key observations noted from the results of the survey are summarised below:

Awareness of peer supports in the hospital

  • 62% of parents surveyed were made aware of a peer support service such as LLTF during their stay in the hospital,
  • 100% indicated that they would have liked to have been made aware of the service while in the hospital.

Benefits of Peer Support to families

Mothers of babies in neonatal units report that the old advice and shared experiences from friends or family do not meet their needs for support and so turn to their peers in the Neonatal Unit or peer-run services to help them cope. In the surveys conducted, highlighted many benefits of LLTF peer support services. Below are some of the benefits expressed by participants.

  • 92% experienced reduced feelings of anxiety and or depression,
  • 95% experienced improved ability to cope with having a premature/sick baby,
  • 97% had access to the community that understands the premature experience, which they could not find elsewhere,
  • 94% had access to a range of services that they could not obtain anywhere else,
  • 99% accessed information that helped them feel more in control of their situation,
  • 98% accessed a safe place to share and ask questions,
  • 99% accessed a network that provided social connectedness and reduced social isolation.

How important is it for parents to receive information and support as part of their hospital care from others that understand the experience?

 Peer support is important to parents.When accessing LLTF peer support services parents indicated the following as vital parts of the services; Peer to peer information or the passing of knowledge from a shared experience. Parents struggle to understand the hospital process language and so LLTF parent guides, tip sheets and website work to decipher the NICU experience. These resources, written from a parent’s perspective, are designed to complement the medical information provided to parents when admitted to the unit and can be accessed free of charge.

  • 98% of parents felt that it is very or extremely valuable to receive information written by parents that have experienced time in NICU/SCN,
  • 100% of parents felt peer support provided by LLTF was important to them after having a baby in a neonatal unit. 88% also sought support through counsellors and psychologists and,
  • 47% were supported by spiritual or religious counselling.
  • 90% of parents that received the handbook while in the hospital felt the information provided was adequate about the experience of having a premature baby,
  • 97% of parents who did not get the LLTF handbook in the hospital would have liked to have had access to this information.

What can we take away from this?

Parents want peer support to be part of their care while in the hospital, and once they transition home. They noted that the usual channels of support, such as friends and family, cannot meet their needs and that having opportunities to connect to a community with shared experiences fills this gap in support. Parents cited benefits, such as reduced feelings of isolation, depression and anxiety, and loss of control.

We hope that by sharing this information, LLTF can work together to improve access and can reduce the emotional and social impacts that having a baby born early can bring. Offering peer support to all NICU parents is an integral component of family-centered care and comprehensive family support.  Life’s Little Treasures Foundation peer support services have been designed to complement neonatal services and fill the gap in this area of care.

If you would like to know more about how you can access these free services for your unit, please contact our Product and Services Manager at Karen.peters@lifeslittletreasures.org.au.