In the unit
While their baby is in the Neonatal Intensive Care Unit (NICU) or Special Care Nursery (SCN), families and carers can find it difficult to understand their role. They often feel like visitors rather than parents, who are in the way or bothering busy staff. They may not know what they are allowed or able to do in the unit.
It is important to help build families’ and carers’ confidence, and communicate clearly that:
- they play a key role in their baby’s care
- they are partners of nurses and doctors
- they are an important resource as they are with their baby all the time
- they should be involved in daily rounds and staff handover whenever possible (via virtual care if necessary).
For more, see Communicating with families and carers and Handover.
Parents say
“The staff were very inclusive and wanted me to feel like a big part of it. They always consulted us and explained things.”
“The best thing they do is to make you take care of the baby. If I didn’t have that touching and connection, I would have been absolutely devastated.”
“It felt like we were spectators in our own lives rather than involved participants. We weren't given the opportunity to be seen as parents of our baby, to be able to give consent and decide when certain things should happen.”
Mental health and wellbeing support
Families and carers need support to maintain their mental health and wellbeing during a stressful time when their baby is in NICU or SCN, including access to and information on relevant resources and support organisations.
Staff should consider:
- Is there peer support or a social worker available for the family?
- Has the family/carer been given the resources available, e.g. a NICU Journey Bead Program parent support group, journal, dinner and parking vouchers?
Information on open disclosure and the Clinical Excellence Commission handbook and NSW Health Policy.
Source: Clinical Excellence Commission
Shared decision making – Aboriginal specific
An interactive shared decision making model for use by Aboriginal people and their health professionals.
Source: Agency for Clinical Innovation
Consumer enablement: a clinician's guide
Information, tools and resources for clinicians to facilitate consumers, carers and communities to manage their own health and wellbeing.
Source: Agency for Clinical Innovation
Tips for the NICU and special care staff
List of needs and desires from parents and families to staff.
Source: Life's Little Treasures Foundation
British association of perinatal medicine - family integrated care: a framework for practice
Describes a model of Family Integrated Care (FICare) and implementation in UK neonatal units and networks.
Source: British Association of Perinatal Medicine
This website introduces the concept of Family Integrated Care and gives tools and resources for implementation for this model.
Source: Family Integrated Care
Video and podcast resources that discuss best practices to support the health and development of infants and their families, and those who care for them, in intensive care hospital settings and beyond.
Source: NIDCAP Federation International
Miracle Babies Foundation - In Hospital
Information hub for parents to support navigation of the hospital stay.
Source: Miracle Babies Foundation
Family-centred care in the NICU
Understanding family-centred care and the important role you have in your baby's care
Source: raisingchildren.net.au
Parent participation in FICare
Videos and information highlight some of the key activities parents can be involved in.
Source: Family Integrated Care
Information on the role of the family, how parents feel and how they can be involved in care.
Source: European Foundation for the Care of Newborn Infants
Tips for parents to build a close and trusting relationship with their baby.
Source: NIDCAP Federation International
Mental health
Australian Multiple Birth Association
Information, support and advocacy for multiple birth families.
Source: Australian Multiple Birth Association
Genetic Alliance: useful support services
Contact details for Australian and international support groups for rare and genetic conditions.
Source: Genetic Alliance Australia
Supporting children with undiagnosed or rare genetic conditions
Information, support and advocacy for families caring for a child with an undiagnosed or rare genetic condition.
Source: Syndromes Without a Name (SWAN)
Through the Unexpected: prenatal diagnosis support
A support and advocacy group for parents who receive the news that their unborn baby has a difference in their health, development or genetics through prenatal diagnosis.
Source: Through the Unexpected
Nurture Program services and resources
A parent to parent support program available from a threatened pregnancy, during the time spent in a Neonatal Intensive Care Unit (NICU) or Special Care Nursery (SCN), the transition to home and beyond.
Source: Miracle Babies Foundation
Links to find your local parent group and playgroups in NSW.
Source: NSW Government
Friendly Faces Helping Hands Foundation
An information hub for rural patients, their carers and families to access practical information and support when hospitalisation is required a long way from home, kin and country.
Source: Friendly Faces Helping Hands Foundation
Mental health services: perinatal and parenting
Contact details for support services in perinatal and parenting stages.
Source: NSW Health
A guide for dads: caring for your family during perinatal mental illness
Short videos for fathers on baby care, and finding support when a partner is unwell or being treated for mental illness in a hospital or healthcare facility.
Source: NSW Health
Free program for dads and dads-to-be to receive support information and tips via text messages.
Source: SMS4Dads
Wellbeing for you and your baby
Videos for new and expectant parents on talking about how you are feeling and asking for help. Available in English, Arabic, Bangla, Chinese, Nepali, Vietnamese.
Source: NSW Health
Staff say
“I run out of time to tell parents everything.”
“Facilitating regular meetings between the multidisciplinary team and parents is so valuable and should also try and incorporate other key support people to recognise the importance of extended networks.”
Using virtual care
Sometimes circumstances may prevent families and carers from being by their baby’s bedside. Connecting virtually during rounds and handover allows for accurate and timely information sharing and collaborative decision making and ensuring families and carers are partners in care.
When conducting a videoconference encourage any onsite parents and carers to write on the patient journey board and show the journey board for those connecting virtually, giving them an opportunity to add to it.
How to use virtual care in NSW Health (myVirtualCare)
There are two ways to use myVirtualCare to connect family members not at the bedside, via the waiting queue and direct call. See Virtual Care for resources, including step-by-step instructions on making calls.
During a baby’s stay in the unit, it can also be helpful to support your service and communication channels by sending a short email or SMS to families and carers summarising the agreed priorities. This can help to focus the family members and allow them to refer back to the information provided if needed.